Today we had the appointment with the medical oncologist who has been doing the follow ups on Doug. The last time we saw him (Oct 26) we were told that Doug was still in remission, and that his hip pain was probably 'arthritis'. A week later, after CT scan results showed lytic lesions (bone destruction), the oncologist called us on the phone to tell us that Doug is not in remission and he needed to go for radiation on the hip. The reason his relapse was not noticed before: the myeloma has 'mutated' into light chain disease (nonsecretory myeloma), thus there is no M-spike on the blood work. (Actually the elevated light chains did show on the blood work but only the M-protein was being followed. Don't get me started on that.) All this is background info; I have told you the details in earlier posts.
Today, as we had been told on the phone, Dr. M said that Doug needs to go back on chemo to try to get this under control. Doug will go back on the same drugs that controlled the myeloma in the first place. The drugs that he took before the stem cell transplant: Revlimid and Dexamethasone. He had a good response to the drugs in 2008. Both these are in pill form and can be taken at home. That's good.
The Revlimid is a highly controlled drug, also a very expensive drug. We have applied for a grant that would help cover the expense, since even with insurance out of pocket costs are high.
Dr. M also recommended that Doug go back on Zometa (a biophosphanate drug to strengthen bone - not a chemo drug). Zometa is given via IV at the local hospital. We were told that there is a higher risk, now that Doug has already had two years of Zometa, of necrosis of the jaw. Just a quirky little possible side effect. Necrosis is bone death; if that happens it would probably entail major surgery of the jaw bone. It is a low probability. The benefit/risk ratio favors going ahead and doing the Zometa. The aim of Zometa is to strengthen bones and prevent more lesions in the bone, and prevent possible fractures. The first time around Doug got Zometa every month - this time it will be every six weeks.
Dr. M also ordered a 'skeletal survey' to be done. Basically plain x-rays of the bones most likely to be involved - skull, pelvis, spine, long bones of arms and legs. This will be done next week, and will show if there are any lesions present now that are not symptomatic yet.
Doug will get two cycles of Rev/Dex chemo (two months) and then will get re-evaluated to see if there is a response. If yes, great news. If not, we will seek a second opinion and formulate a Plan B.
That's the news for now. I am glad to be taking action to fight this disease. Our spirits remain high.
"May the God of hope fill you with all joy
and peace as you trust in him." Romans 15:13
Wednesday, November 30, 2011
Saturday, November 26, 2011
Thanksgiving Day; more info
We had a wonderful Thanksgiving with family. We went to Pueblo CO which is a 2.5 hour drive from our house. Dinner was at our daughter in law's parents home. We really enjoyed spending time with our son and daughter in law, and all five of our grandkids. They range in age from 15 to 19; one set of twins. Great kids. It was a super day but tiring.
Doug is still having some hip pain. At first the decrease in pain from the radiation was dramatic; the lingering pain is not good, but we hope it will go away. Doug plans to get a handicapped parking permit, as he can only walk a short distance before hurting. Even standing for long hurts.
I found a couple of scientific papers on light chain disease. Here is an excerpt from one:
"Up to 20 percent of patients have a minimally elevated (less than 1 g per dL [10 g per L]) or normal serum γ-globulin level; the latter group has elevated urine excretion of light chains (κ or λ), which is often called Bence Jones myeloma. The type and amount of urine monoclonal light chains are typically measured with urine protein immunofixation. There is an even smaller subgroup (3 percent of multiple myeloma cases) with undetectable serum or urine M proteins on electrophoresis or immunofixation. This subgroup, called nonsecretory multiple myeloma, is diagnosed in patients with an abnormal serum free light chain ratio."
Doug is still having some hip pain. At first the decrease in pain from the radiation was dramatic; the lingering pain is not good, but we hope it will go away. Doug plans to get a handicapped parking permit, as he can only walk a short distance before hurting. Even standing for long hurts.
I found a couple of scientific papers on light chain disease. Here is an excerpt from one:
"Up to 20 percent of patients have a minimally elevated (less than 1 g per dL [10 g per L]) or normal serum γ-globulin level; the latter group has elevated urine excretion of light chains (κ or λ), which is often called Bence Jones myeloma. The type and amount of urine monoclonal light chains are typically measured with urine protein immunofixation. There is an even smaller subgroup (3 percent of multiple myeloma cases) with undetectable serum or urine M proteins on electrophoresis or immunofixation. This subgroup, called nonsecretory multiple myeloma, is diagnosed in patients with an abnormal serum free light chain ratio."
Sorry for the technical language, but I think some of the blog followers are myeloma patients and might appreciate the information. I don't believe everything I find on the web and am careful to seek only the .gov or .edu sites. I didn't find the Multiple Myeloma News to be very helpful, nor was the International Multiple Myeloma Foundation (myeloma.org). Doug falls into the 3% subgroup; that helps explain the lack of information out there.
Correction: on 12-2-11 when we saw Dr. Matous for the second opinion, he said the correct term for what Doug has now is "Lambda Light Chain Myeloma", and 15% of myeloma patients are in this group.
Another paper says: "Light chains can cause a rapid decline of renal (kidney) function as most light chains are quickly filtered by the kidneys." The word "can" does not mean "will"!
We are blessed to have strong faith and a personal relationship with God. I will close with this quote:
Correction: on 12-2-11 when we saw Dr. Matous for the second opinion, he said the correct term for what Doug has now is "Lambda Light Chain Myeloma", and 15% of myeloma patients are in this group.
Another paper says: "Light chains can cause a rapid decline of renal (kidney) function as most light chains are quickly filtered by the kidneys." The word "can" does not mean "will"!
We are blessed to have strong faith and a personal relationship with God. I will close with this quote:
"When we come to the
edge of the light we know, and are about to step off into the darkness of the
unknown, of this we can be sure. Either God will provide something solid to
stand on or .... We will be taught to fly." unknown author
Monday, November 21, 2011
Light Chain Disease, Last Radiation Tx
Today was Doug's last radiation treatment to his left hip. The radiation has helped so much with the pain. What a relief!
We got the results from the blood test that was ordered last Friday; Doug's calcium level is normal. That is good news.
We received another email from the clinical research nurse -- due to the "light chain disease", Doug is not eligible for any trials. Kind of a bummer that he won't have access to an investigational drug, but there are powerful drugs already on the market. There was only a 50% chance that he would actually get the new drug in the study anyway.
I found a little more about light chain disease in MM. There doesn't seem to be much information out there for the layman.
"Multiple Myeloma is a cancer of a type of white blood cells called plasma cells. These cells come from the bone marrow and produce antibodies (or immunoglobulin) that are important in fighting infections. In Myeloma, the abnormal plasma cells produce too much of one type of immunoglobulin called the M-protein. (Because of a mutation, Doug now has no M-protein showing in his blood tests, but he did at diagnosis.) A complete antibody molecule is made of both "heavy chains" and "light chains". If the malignant cells produce only the light chain part of the antibody, the patient has "light chain disease".
I don't know yet what impact the light chain disease mutation will have on Doug's prognosis. Quality of life is excellent now, and we intend to enjoy it.
To get down to basics, all any of us has is today -- who knows what tomorrow will bring.
We wish you all a
We got the results from the blood test that was ordered last Friday; Doug's calcium level is normal. That is good news.
We received another email from the clinical research nurse -- due to the "light chain disease", Doug is not eligible for any trials. Kind of a bummer that he won't have access to an investigational drug, but there are powerful drugs already on the market. There was only a 50% chance that he would actually get the new drug in the study anyway.
I found a little more about light chain disease in MM. There doesn't seem to be much information out there for the layman.
"Multiple Myeloma is a cancer of a type of white blood cells called plasma cells. These cells come from the bone marrow and produce antibodies (or immunoglobulin) that are important in fighting infections. In Myeloma, the abnormal plasma cells produce too much of one type of immunoglobulin called the M-protein. (Because of a mutation, Doug now has no M-protein showing in his blood tests, but he did at diagnosis.) A complete antibody molecule is made of both "heavy chains" and "light chains". If the malignant cells produce only the light chain part of the antibody, the patient has "light chain disease".
I don't know yet what impact the light chain disease mutation will have on Doug's prognosis. Quality of life is excellent now, and we intend to enjoy it.
To get down to basics, all any of us has is today -- who knows what tomorrow will bring.
We wish you all a
Saturday, November 19, 2011
Not Eligible for Clinical Trial
We are home! We picked Chester up from the kennel yesterday late afternoon. He was fit as a fiddle, happy and well fed. I know I've mentioned it before, but we just can't say enough good things about Patti and Mike Bondurant. Patti gave Chester a bath and said she thinks he is part German Shepherd - from all his hair and because of the way he was barking at all the big dogs. Chester told me he just doesn't know how they can run the kennel without him.
We go back for Doug's last radiation treatment Monday, but we'll make it a day trip, and take Chester with us. He's good in the car.
Our computer stopped working last Thursday while we were still in Edwards. As soon as we got home, we took it to Kelly, our trusted computer repair person. For now we are using the old computer - and thankful it still works.
In the last post I mentioned we were going to look into a clinical trial for Doug. I didn't want to wait until our appointment with the oncologist, so I emailed the clinical research nurse. This morning when we booted up the old computer, there was an answer from her. Doug does not qualify. She said:
"To qualify for this trial, he would need to have an M-protein of at least 0.5, and according to the labs and notes I received from your oncologist's office, your husband does not currently have any m-protein in his blood—he has light chain only disease."
We are disappointed; I was hoping Doug would have a chance at the new investigational drug.
I did reply and ask if there is another trial he might be eligible for. If not, Doug will go back on the original drugs that put him in the first remission. I really hate waiting - I want him on chemo NOW. Our appointment with the oncologist isn't until Nov 30.
Doug still takes the pain med when needed, but if he isn't too active, he doesn't hurt. He is having some nausea; it is not from the radiation (only his hip is being treated, far away from his stomach). Dr. Hardenberg is wondering if it is from elevated calcium level, so she ordered a CBC and chem. blood test. With Multiple Myeloma, calcium can leach out from the bones into the blood. Not a good thing, but treatable. We won't get those results until Monday. Did I say I hate waiting?
I got a wonderful gift from a dear friend -- the daily devotional "Jesus Calling" by Sarah Young . I highly recommend it; the readings are so comforting. Here is a portion of today's:
Leave outcomes up to Me. Follow wherever I lead, without worrying about how it will all turn out. Live in the now, concentrating on staying in step with Me.When our path leads to a cliff, be willing to climb it with My help. When we come to a resting place, take time to be refreshed in My Presence.
We go back for Doug's last radiation treatment Monday, but we'll make it a day trip, and take Chester with us. He's good in the car.
Our computer stopped working last Thursday while we were still in Edwards. As soon as we got home, we took it to Kelly, our trusted computer repair person. For now we are using the old computer - and thankful it still works.
In the last post I mentioned we were going to look into a clinical trial for Doug. I didn't want to wait until our appointment with the oncologist, so I emailed the clinical research nurse. This morning when we booted up the old computer, there was an answer from her. Doug does not qualify. She said:
"To qualify for this trial, he would need to have an M-protein of at least 0.5, and according to the labs and notes I received from your oncologist's office, your husband does not currently have any m-protein in his blood—he has light chain only disease."
We are disappointed; I was hoping Doug would have a chance at the new investigational drug.
I did reply and ask if there is another trial he might be eligible for. If not, Doug will go back on the original drugs that put him in the first remission. I really hate waiting - I want him on chemo NOW. Our appointment with the oncologist isn't until Nov 30.
Doug still takes the pain med when needed, but if he isn't too active, he doesn't hurt. He is having some nausea; it is not from the radiation (only his hip is being treated, far away from his stomach). Dr. Hardenberg is wondering if it is from elevated calcium level, so she ordered a CBC and chem. blood test. With Multiple Myeloma, calcium can leach out from the bones into the blood. Not a good thing, but treatable. We won't get those results until Monday. Did I say I hate waiting?
I got a wonderful gift from a dear friend -- the daily devotional "Jesus Calling" by Sarah Young . I highly recommend it; the readings are so comforting. Here is a portion of today's:
Leave outcomes up to Me. Follow wherever I lead, without worrying about how it will all turn out. Live in the now, concentrating on staying in step with Me.When our path leads to a cliff, be willing to climb it with My help. When we come to a resting place, take time to be refreshed in My Presence.
Tuesday, November 15, 2011
Cancer Support Group
Our drive back to Edwards yesterday was uneventful. We've been fortunate in travel conditions. Today will be radiation treatment number six and things are going well. Doug has taken no pain meds today - yea!
Today at noon we had a cancer support group here at Jack's Place. Two couples, including us, and two women attended. A social worker with nursing background (or the other way around) lead the group - we all introduced ourselves and told why we are here. One guy told of an 'out of body' near death experience he had ten years ago. He described it as a textbook case: he was up above his body and could see everything. He said he felt an absolute calm, peace, and joy before he returned to his body -- and that now he has no fear of death. Several of us said how we found it very comforting to know that this life is not the "real" one.
I have been guilty of letting my mind run ahead too much -- looking too far ahead in the future and anticipating problems. That's not good.
“Worrying does not empty tomorrow of its troubles; it empties today of its strength.” unknown
"Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes."
Matt 6:34 The Message
Beautiful thought, just what I needed.
At the support group today we learned of a clinical trial for relapsed myeloma. It is a study of an investigational new drug - carfilzomib. Definitely something we will look into when we see the oncologist.
Stay strong, all of you!
Love to all.
Today at noon we had a cancer support group here at Jack's Place. Two couples, including us, and two women attended. A social worker with nursing background (or the other way around) lead the group - we all introduced ourselves and told why we are here. One guy told of an 'out of body' near death experience he had ten years ago. He described it as a textbook case: he was up above his body and could see everything. He said he felt an absolute calm, peace, and joy before he returned to his body -- and that now he has no fear of death. Several of us said how we found it very comforting to know that this life is not the "real" one.
I have been guilty of letting my mind run ahead too much -- looking too far ahead in the future and anticipating problems. That's not good.
“Worrying does not empty tomorrow of its troubles; it empties today of its strength.” unknown
"Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes."
Matt 6:34 The Message
Beautiful thought, just what I needed.
At the support group today we learned of a clinical trial for relapsed myeloma. It is a study of an investigational new drug - carfilzomib. Definitely something we will look into when we see the oncologist.
Stay strong, all of you!
Love to all.
Sunday, November 13, 2011
Restful Sunday - Less Pain
Doug and I went to church today; it was such a joy to be there, hear God's word and get to see so many good friends. Clearview church in Buena Vista CO is truly a wonderful, awesome, loving church. Clearview members go the extra mile to care for one another in so many ways. We just are so blessed.
Doug's hip pain is so much better today. He's still taking the oxycodone and Ativan, and resting a lot.
The weather is chilly and blustery, but we are so cozy snuggled up at home, and happy to be here.
Love to all.
God doesn't promise security FROM life's storms but security IN life's storms. unknown
Doug's hip pain is so much better today. He's still taking the oxycodone and Ativan, and resting a lot.
The weather is chilly and blustery, but we are so cozy snuggled up at home, and happy to be here.
Love to all.
God doesn't promise security FROM life's storms but security IN life's storms. unknown
Friday, November 11, 2011
Home for the Weekend
We are home in Buena Vista for the weekend. Doug wanted to drive home as he felt pretty good; he did fine - it takes us about one hour and 45 minutes. It was beautiful travel weather. It feels so good to be home and relax for a couple of days.
Three different people brought food to us today. We are so very blessed with such friends who pray and care for us.
I called the kennel; they said Chester is doing very well. He dragged one of his blankets out through the doggie door and laid outside in the sunshine. The gal said she went out to see if he was cold and his ears were warm. He's eating well, so we decided to leave him there and not bring him home for just a couple of days, then have to take him back.
Here's a picture of Chester, all 7 pounds of him. He looks angelic but don't let that fool you.
"Praise the Lord, O my soul; all my inmost being, praise his holy name. Praise the Lord, O my soul, and forget not all his benefits."
Psalm 103:1-2
Three different people brought food to us today. We are so very blessed with such friends who pray and care for us.
I called the kennel; they said Chester is doing very well. He dragged one of his blankets out through the doggie door and laid outside in the sunshine. The gal said she went out to see if he was cold and his ears were warm. He's eating well, so we decided to leave him there and not bring him home for just a couple of days, then have to take him back.
Here's a picture of Chester, all 7 pounds of him. He looks angelic but don't let that fool you.
"Praise the Lord, O my soul; all my inmost being, praise his holy name. Praise the Lord, O my soul, and forget not all his benefits."
Psalm 103:1-2
Thursday, November 10, 2011
Better
Well I didn't call the rescue squad last night, but today I called the God Squad. The Triple Braid prayer warriors prayed for me and for Doug. Many others are praying for us also. God does provide. I feel much calmer.
Nurse Susan called back - Dr. H, the radiation oncologist wrote a prescription for Ativan, for nausea and anxiety. Doug feels much better and ate a little. I am a stress eater, so no worries there. Chocolate is my drug of choice. Could be worse!
Thanks to all who pray for us.
May the God of hope fill you with all joy and peace as you trust in him. Romans 15:13
Nurse Susan called back - Dr. H, the radiation oncologist wrote a prescription for Ativan, for nausea and anxiety. Doug feels much better and ate a little. I am a stress eater, so no worries there. Chocolate is my drug of choice. Could be worse!
Thanks to all who pray for us.
May the God of hope fill you with all joy and peace as you trust in him. Romans 15:13
Rough Night
Last night was really rough. At 6 pm Doug said his pain level was a 10. He took his first dose of Oxycontin, the newly prescribed pain med.
He laid down at 9 pm - by 10 pm he was feeling very uncomfortable - clammy, dizzy, feeling "disconnected", slight nausea, anxiety, did not feel he could lie flat. I propped him up on pillows and he dozed on and off but neither of us got much sleep. At 4 am he said to me "Call the squad" -- I checked him and decided that was coming from the anxiety - I did not call the squad, but reassured him he would be okay and he was feeling side effects, nothing more. At 8 am when the oncology dept opened, we went over to have his blood pressure checked and talked to the nurse. His BP was okay by then and he was feeling much better. Susan, the nurse, reafirmed that what he was experiencing was side effects, but she was surprised that one dose did that. She said he should go back to just taking the oxycodone for now.
Tomorrow is the day Dr. Hardenbergh will see Doug. Susan said they would come up with some other pain med to try. They really want him on some form of long-acting pain med and I agree. I've been nagging at him to take his pain med on a regular schedule before the pain gets too bad but he still waits too long. Stubborn men!
Doug is dozing now. I am waiting for Susan to call me back, as Doug wants something for nausea so he can eat.
I'm really tired and close to tears but holding together. I know God is good and He will provide.
He laid down at 9 pm - by 10 pm he was feeling very uncomfortable - clammy, dizzy, feeling "disconnected", slight nausea, anxiety, did not feel he could lie flat. I propped him up on pillows and he dozed on and off but neither of us got much sleep. At 4 am he said to me "Call the squad" -- I checked him and decided that was coming from the anxiety - I did not call the squad, but reassured him he would be okay and he was feeling side effects, nothing more. At 8 am when the oncology dept opened, we went over to have his blood pressure checked and talked to the nurse. His BP was okay by then and he was feeling much better. Susan, the nurse, reafirmed that what he was experiencing was side effects, but she was surprised that one dose did that. She said he should go back to just taking the oxycodone for now.
Tomorrow is the day Dr. Hardenbergh will see Doug. Susan said they would come up with some other pain med to try. They really want him on some form of long-acting pain med and I agree. I've been nagging at him to take his pain med on a regular schedule before the pain gets too bad but he still waits too long. Stubborn men!
Doug is dozing now. I am waiting for Susan to call me back, as Doug wants something for nausea so he can eat.
I'm really tired and close to tears but holding together. I know God is good and He will provide.
Wednesday, November 9, 2011
Jack's Place
My clever friend Barb suggested that we could post photos by inserting the camera SD card directly into the slot on the computer. (Remember that we forgot to bring the cable that connects camera to computer.) So now I can show you some photos of where we are staying.
Jack's Place is right across the parking lot from Shaw Cancer Center in Edwards CO. Jack's has 12 private patient rooms and several communal shared spaces. Jack's has a "pay-as-you-are-able" philosophy -- suggested fee is $25 a day (for rooms that would cost around $300 a day in this area), but no one is ever turned away.
Each room has a private bathroom, tv/dvd player, small table and two chairs and a small refrigerator for drinks.
Here is the dining and sitting area. There are several tables. Eating in rooms is not allowed.
This is the kitchen we all share. We pick a section of one of two fridges to store our food; there is freezer space too. On the opposite wall are 12 cupboards - one for each room, to store other food items. We have two microwaves, two dishwashers, coffee maker, plus gas stove and oven. Dishes, pots and pans are supplied. We all clean up after ourselves.
Here is the downstairs game room with big screen tv and fireplace.
This is our library - lots of good books as well as audiobooks. I am currently reading a book I found here: The Art of Racing in the Rain by Garth Stein. Wonderful book! The library also has a computer and printer that we can use.
The sunroom faces southwest - a nice spot to sit in the morning. There is an outside patio through french doors from the sunroom.
I didn't get a picture of the laundry room that has two washers and four dryers.
If we can't be home, Jack's Place is a fine place to be. But we would much rather be home.
Jack's Place is right across the parking lot from Shaw Cancer Center in Edwards CO. Jack's has 12 private patient rooms and several communal shared spaces. Jack's has a "pay-as-you-are-able" philosophy -- suggested fee is $25 a day (for rooms that would cost around $300 a day in this area), but no one is ever turned away.
Here is the downstairs game room with big screen tv and fireplace.
This is our library - lots of good books as well as audiobooks. I am currently reading a book I found here: The Art of Racing in the Rain by Garth Stein. Wonderful book! The library also has a computer and printer that we can use.
The sunroom faces southwest - a nice spot to sit in the morning. There is an outside patio through french doors from the sunroom.
I didn't get a picture of the laundry room that has two washers and four dryers.
If we can't be home, Jack's Place is a fine place to be. But we would much rather be home.
New Pain Med
This afternoon the pharmacy called - all the insurance requirements have been met and they could fill the prescription for Oxycontin. So we went and picked it up at 3:30. Even with the insurance kicking in, it was $80 for our co-pay. It is Oxycontin 20 mg. Sure hope it works. Mornings are the best time for Doug; after laying quietly in bed he doesn't have much pain. At 6:00 pm Doug said his pain level was a 10 out of 10. The Oxycontin is a time-release tablet, so he only has to take it every 12 hours. He has also started on Miralax since the pain meds have a constipating effect.
Doug has been doing all the driving since we got here. He loves driving and doesn't like to be in the passenger seat. But this new pain med could make him too drowsy to drive - I'd better get familiar with these roads. We are very close to I-70 (its right outside our window) but we've been using Hwy 6 to get to Avon from Edwards. There are almost no normal intersections here; it's all roundabouts. It can be confusing to find the right road.
Late this afternoon one of the Pet Partner teams showed up in the commons area. Korsack is an Italian Greyhound and her partner is Jeanne. Korsack curled up in Doug's lap after making the rounds to meet everyone. Dogs have such a peaceful calming influence.
Doug has been doing all the driving since we got here. He loves driving and doesn't like to be in the passenger seat. But this new pain med could make him too drowsy to drive - I'd better get familiar with these roads. We are very close to I-70 (its right outside our window) but we've been using Hwy 6 to get to Avon from Edwards. There are almost no normal intersections here; it's all roundabouts. It can be confusing to find the right road.
Late this afternoon one of the Pet Partner teams showed up in the commons area. Korsack is an Italian Greyhound and her partner is Jeanne. Korsack curled up in Doug's lap after making the rounds to meet everyone. Dogs have such a peaceful calming influence.
Gratitudes and Pet Partners
It is a sunny morning here in Edwards CO. Doug had his second radiation treatment this morning, and this time the therapists invited me back to watch. This was a special perk because I am a retired radiation therapist. Their machine and computer system is exactly like what I used to work with. I almost felt like I was back at work. The patient area is welcoming and nicely decorated - including three large lovely bronze sculptures, no doubt donated.
Jack's Place, our temporary residence, has a visiting therapy dog program. The dogs are registered with the Delta Society Pet Partners. I had a wonderful Rottweiler, Leonard, who was also a DS Pet Partner! I know the dedication and extensive training and testing these teams undergo. Leonard and I worked mostly with kids - he was a wonderful Reading Dog. We volunteered at our local library back in Nebraska; Leonard was the first dog in the Paws for Books program. Leonard loved everyone. Sadly he died in 2008 but there are many happy memories.
We got to meet one of the Pet Parner teams here. Gracie is a JRT who is happy and friendly. Doug has requested another visit from Gracie and her mom.
I got to thinking this morning how blessed I am. Following are some gratitudes, in no particular order:
A husband who prays
I am a beloved child of God
Our wonderful daughter in law
My loving sister and brother in law
Our trusty little car
Living in Buena Vista CO
Our church family
Good neighbors
I am retired so I don’t have to split my time between work and Doug
The caring people at the boarding kennel
The Lord who keeps me strong
Five healthy grandkids
Dogs and their unconditional love
My Bible
Bible studies
Thrift stores
Books
Love to all.
Jack's Place, our temporary residence, has a visiting therapy dog program. The dogs are registered with the Delta Society Pet Partners. I had a wonderful Rottweiler, Leonard, who was also a DS Pet Partner! I know the dedication and extensive training and testing these teams undergo. Leonard and I worked mostly with kids - he was a wonderful Reading Dog. We volunteered at our local library back in Nebraska; Leonard was the first dog in the Paws for Books program. Leonard loved everyone. Sadly he died in 2008 but there are many happy memories.
We got to meet one of the Pet Parner teams here. Gracie is a JRT who is happy and friendly. Doug has requested another visit from Gracie and her mom.
I got to thinking this morning how blessed I am. Following are some gratitudes, in no particular order:
A husband who prays
I am a beloved child of God
So many
people who keep us in their prayers
My husband
who never complains even when he is in pain
Jack’s Place where we can stay during radiation treatment
Our son who
is an excellent father to our grandchildrenJack’s Place where we can stay during radiation treatment
Our wonderful daughter in law
My loving sister and brother in law
Our trusty little car
Living in Buena Vista CO
Our church family
Good neighbors
I am retired so I don’t have to split my time between work and Doug
The caring people at the boarding kennel
The Lord who keeps me strong
Five healthy grandkids
Dogs and their unconditional love
My Bible
Bible studies
Thrift stores
Clean clothes
Opportunities
to help othersBooks
I'm sure I could go on and on, but these will do for now.
Love to all.
Tuesday, November 8, 2011
First Radiation Treatment
We went out this morning to pick up a few things we had not brought with us. We drove around Edwards and Avon to familiarize ourselves with the area. Doug waited in the car while I shopped.
The oncology nurse, Sue, called in the early afternoon to say that Dr. Hardenbergh had written a new prescription for pain meds and gave us a time to pick it up at the dept. and talk to her. She said she didn't think they had things ready for Doug's treatment yet. We came back to our room to relax and an hour later we got a call -- Doug would get his first treatment at 5:15. Good! We appreciate Dr. H. getting the ball rolling and not waiting until tomorrow. Two people had to stay overtime but they are professionals and it comes with the territory. Good people.
After the treatment it was dark out, but we wanted to fill the script. So off we went to City Market pharmacy. We didn't get it filled. The script was for Oxycontin, a high strength time-release form of Oxycodone. The pharmacist said the insurance company requires pre-approval for this drug. The physician needs to send forms to the insurance and even then there is a possibility they could deny it. Of course we could pay for it out of pocket -- to the tune of $260. For now Doug will continue with the Oxycodone and he can double up on it if he needs to. And the nurse convinced him to take it on a regular schedule - and not to wait until he hurts. (I had already told him that -- grrgh.)
We have met several other people who are staying here at Jack's Place. One guy is almost finished with his course of treatment - after five weeks. I'm glad we won't need to stay that long. Looks like Doug's last treatment will be Monday the 21st.
Thanks for all the helpful comments, encouragements and prayers! God is good. We are blessed.
Do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. – Isaiah 41:10
The oncology nurse, Sue, called in the early afternoon to say that Dr. Hardenbergh had written a new prescription for pain meds and gave us a time to pick it up at the dept. and talk to her. She said she didn't think they had things ready for Doug's treatment yet. We came back to our room to relax and an hour later we got a call -- Doug would get his first treatment at 5:15. Good! We appreciate Dr. H. getting the ball rolling and not waiting until tomorrow. Two people had to stay overtime but they are professionals and it comes with the territory. Good people.
After the treatment it was dark out, but we wanted to fill the script. So off we went to City Market pharmacy. We didn't get it filled. The script was for Oxycontin, a high strength time-release form of Oxycodone. The pharmacist said the insurance company requires pre-approval for this drug. The physician needs to send forms to the insurance and even then there is a possibility they could deny it. Of course we could pay for it out of pocket -- to the tune of $260. For now Doug will continue with the Oxycodone and he can double up on it if he needs to. And the nurse convinced him to take it on a regular schedule - and not to wait until he hurts. (I had already told him that -- grrgh.)
We have met several other people who are staying here at Jack's Place. One guy is almost finished with his course of treatment - after five weeks. I'm glad we won't need to stay that long. Looks like Doug's last treatment will be Monday the 21st.
Thanks for all the helpful comments, encouragements and prayers! God is good. We are blessed.
Do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. – Isaiah 41:10
Monday, November 7, 2011
Radiation Therapy
Today has been busy. We left home at 7:30 to take Chester to the boarding kennel. Mike, one of the owners, was there and he remembered us from the previous time we had to leave Chester and Piper for two months, when Doug went through the transplant. Mike said that since we were leaving Chester for medical reasons again, he would only charge us $10 a day. And he said we shouldn't worry about how long we needed to be gone; although they were booked solid over Thanksgiving, they would put Chester up front in the office if need be. This is an answer to prayer right there. This is WagnTails kennel in Salida -- Mike and Patty Bondurant are wonderful people.
We had good driving conditions to Shaw Cancer Center. We got here in plenty of time to get checked in to our 'home away from home', Jack's Place. It is just across a parking lot from the cancer center. We have a nice hotel-like room. Jack's has a community kitchen and dining area. Everyone brings their own food - we have a cupboard just for us and use of a refrigerator. I have taken photos, but we forgot to bring the cable that connects the camera to the computer!
At 1:15, we had the consult with Dr. Patricia Hardenbergh, the radiation oncologist. She showed us the CT scan from Oct. 31; we could see quite a few "holes" in Doug's left hip and pelvis. No wonder he hurts! She is going to radiate the whole left side and part of the femur. Doug will have ten treatments.
If there is any good side to MM, it is the sensitivity to radiation. The downside is - radiation to this disease is only palliative -- used to control pain and stop further bone erosion in the treated area, not to achieve a cure. MM affects the whole body and radiation is a local treatment. Whole body radiation would be lethal. Radiation therapy can cure cancers that are localized.
I am a retired radiation therapist -- I used to give radiation treatments. Now I am on the other side.
Dr. H. also showed us the plain x-ray of Doug's pelvis taken Oct 19. The radiologist who read that film reported it as negative - meaning nothing found. However, when Dr. H. showed us, she pointed out several suspicious areas. Even Doug and I could see. Doctors almost never criticize each other, but Dr. H. did admit that it was "under-read". That is troubling; how many other things have been missed by that radiologist? If he (or she) had been more competent, Doug might have been spared the additional week of pain, but the end result would still be the same. It makes me mad, but Doug says he won't let it upset him.
After the consult, we came back 'home' to rest, then back to the radiation dept. for simulation. This the time of mapping out the area on Doug's body; done with a CT scanner. This information is then entered into the treatment planning computer by the dosimetrist to explore the various ways the radiation beam can be configured to minimize hitting organs in the area. Then the doc - the radiation oncologist - looks at the plans and chooses which one to use.
Radiation oncology is really a team effort -- the secretary, the nurse, radiation therapists who position the patient and operate the treatment machine, dosimetrist who does the treatment planning, and the radiation oncologist (physician). Plus the radiation physicist who calibrates the machines.
A large part of Doug's pelvis is involved, so some bowel will get radiated. It shouldn't cause him any major side effects; maybe a little diarrhea, or if lucky, maybe not.
I asked Dr. Hardenbergh about the "Light Chain Disease" label. She said "it is still multiple myeloma." She said it could be considered a 'mutation', since the usual marker for myeloma still comes back as 'no evidence of myeloma'. I looked back at my old notebooks and back in April 2010, at the one year post transplant visit -- Dr. Jeff Matous, the transplant doc (and our hero), reported "Light chain looks good". I recorded the Lamba light chain as 11 at that time with the comment 'excellent'.
I looked back at the most recent lab report of 10-6-11. The light chain is on page four, not highlighted, and was 47.3! I then looked back at the lab report of 7-5-11, and it lists the lambda light chain as 41.3. There was obviously an upward trend. Why was this not noticed? This pisses me off. I plan to ask some questions when we see the medical oncologist - not to accuse so much as to maybe help someone in the future.
Doug has such a marvelous attitude so I need to control myself. But if the light chain rise had been noticed earlier, we could have started back on chemo sooner.
Tomorrow we hope to get the first radiation treatment, if the team gets everything ready by then. We are both exhausted. Because of all the walking to and from today, I got a wheelchair for Doug. The fact that he actually rode in it tells you how much he hurts, even with the pain meds.
We are bouyed up by all the prayers being said for us.
Love to all.
We had good driving conditions to Shaw Cancer Center. We got here in plenty of time to get checked in to our 'home away from home', Jack's Place. It is just across a parking lot from the cancer center. We have a nice hotel-like room. Jack's has a community kitchen and dining area. Everyone brings their own food - we have a cupboard just for us and use of a refrigerator. I have taken photos, but we forgot to bring the cable that connects the camera to the computer!
At 1:15, we had the consult with Dr. Patricia Hardenbergh, the radiation oncologist. She showed us the CT scan from Oct. 31; we could see quite a few "holes" in Doug's left hip and pelvis. No wonder he hurts! She is going to radiate the whole left side and part of the femur. Doug will have ten treatments.
If there is any good side to MM, it is the sensitivity to radiation. The downside is - radiation to this disease is only palliative -- used to control pain and stop further bone erosion in the treated area, not to achieve a cure. MM affects the whole body and radiation is a local treatment. Whole body radiation would be lethal. Radiation therapy can cure cancers that are localized.
I am a retired radiation therapist -- I used to give radiation treatments. Now I am on the other side.
Dr. H. also showed us the plain x-ray of Doug's pelvis taken Oct 19. The radiologist who read that film reported it as negative - meaning nothing found. However, when Dr. H. showed us, she pointed out several suspicious areas. Even Doug and I could see. Doctors almost never criticize each other, but Dr. H. did admit that it was "under-read". That is troubling; how many other things have been missed by that radiologist? If he (or she) had been more competent, Doug might have been spared the additional week of pain, but the end result would still be the same. It makes me mad, but Doug says he won't let it upset him.
After the consult, we came back 'home' to rest, then back to the radiation dept. for simulation. This the time of mapping out the area on Doug's body; done with a CT scanner. This information is then entered into the treatment planning computer by the dosimetrist to explore the various ways the radiation beam can be configured to minimize hitting organs in the area. Then the doc - the radiation oncologist - looks at the plans and chooses which one to use.
Radiation oncology is really a team effort -- the secretary, the nurse, radiation therapists who position the patient and operate the treatment machine, dosimetrist who does the treatment planning, and the radiation oncologist (physician). Plus the radiation physicist who calibrates the machines.
A large part of Doug's pelvis is involved, so some bowel will get radiated. It shouldn't cause him any major side effects; maybe a little diarrhea, or if lucky, maybe not.
I asked Dr. Hardenbergh about the "Light Chain Disease" label. She said "it is still multiple myeloma." She said it could be considered a 'mutation', since the usual marker for myeloma still comes back as 'no evidence of myeloma'. I looked back at my old notebooks and back in April 2010, at the one year post transplant visit -- Dr. Jeff Matous, the transplant doc (and our hero), reported "Light chain looks good". I recorded the Lamba light chain as 11 at that time with the comment 'excellent'.
I looked back at the most recent lab report of 10-6-11. The light chain is on page four, not highlighted, and was 47.3! I then looked back at the lab report of 7-5-11, and it lists the lambda light chain as 41.3. There was obviously an upward trend. Why was this not noticed? This pisses me off. I plan to ask some questions when we see the medical oncologist - not to accuse so much as to maybe help someone in the future.
Doug has such a marvelous attitude so I need to control myself. But if the light chain rise had been noticed earlier, we could have started back on chemo sooner.
Tomorrow we hope to get the first radiation treatment, if the team gets everything ready by then. We are both exhausted. Because of all the walking to and from today, I got a wheelchair for Doug. The fact that he actually rode in it tells you how much he hurts, even with the pain meds.
We are bouyed up by all the prayers being said for us.
Love to all.
Saturday, November 5, 2011
Heading for Radiation
We did not go to the orthopedic consult. Dr. Myers called to tell us that he had spoken with Dr. Hunter. Hunter looked at the CT scan and said there was nothing he needed to do -- that Doug should go directly for Radiation Therapy. So early Monday morning, we will take Chester to the boarding kennel and head to the Shaw Cancer Center.
Wednesday, November 2, 2011
End of Remission
This afternoon Dr. Myers, the oncologist called. He said that he was musing on Doug's hip pain, and went back and looked closely at Doug's blood work. While it is correct that there is no sign of MM spike, the lab tests show a slow rise in light chains. "Light chain disorder" is what Dr. Myers calls it. He consulted with Dr. Matous, a MM expert who was Doug's stem cell transplant physician in Denver. Dr. Myers explained that Light Chain Disorder is a cousin of Multiple Myeloma, and is now "rearing its ugly head". So the cancer is back. Quite a shock, after being told just a week ago that Doug was still in remission.
Both docs think Doug needs to go back on Revlimid - the drug that helped so much in the very beginning.
We will keep the appointment to see the orthopod tomorrow, as something needs to be done regarding the hip area. Not only to relieve pain, but also to prevent possible fractures, which could happen because of the bone lesions.
So it seems the merry-go-round is starting. All we can do is take it one step at a time, and trust the Lord to guide us.
Both docs think Doug needs to go back on Revlimid - the drug that helped so much in the very beginning.
We will keep the appointment to see the orthopod tomorrow, as something needs to be done regarding the hip area. Not only to relieve pain, but also to prevent possible fractures, which could happen because of the bone lesions.
So it seems the merry-go-round is starting. All we can do is take it one step at a time, and trust the Lord to guide us.
Hip Pain
First the good news: Last week Doug had his regular (four times a year) checkup with Dr. Myers, his oncologist. The MM panel shows no MM protein in the blood. Yea! Still in remission. Praise God.
Now the hip pain. Since last June or before, Doug has had intermittant left hip pain. He tried a series of chiropractic treatments which did not help. He tried a series of four accupuncture treatments in July, which did help for several weeks, but the pain came back. It seemed to come and go, depending on how much Doug was on his feet.
His regular doc prescribed physical therapy, which did not help. Finally in early October she ordered plain x-rays of the low back, hip and pelvis - results were negative.
The pain not only continues but is worse. Doug is taking oxycodone 7 mg. If he sits or lies down for a time, the pain goes away, but resumes if he is on his feet.
This last Monday, the doc ordered a CT scan. Now, finally, we got an indication of what might be causing the pain. The scan shows "multiple irregular areas of demineralization." Basically thinning bone. There are several areas of lesions on the hip and proximal femur ranging in size from 1.5 cm to 3.8 cm. The usual contrast could not be given due to Doug's 'abnormal kidney function' (it has been stable for quite a while).
Tomorrow we have an appointment for a consult with an orthopod in a neighboring town.
Now the hip pain. Since last June or before, Doug has had intermittant left hip pain. He tried a series of chiropractic treatments which did not help. He tried a series of four accupuncture treatments in July, which did help for several weeks, but the pain came back. It seemed to come and go, depending on how much Doug was on his feet.
His regular doc prescribed physical therapy, which did not help. Finally in early October she ordered plain x-rays of the low back, hip and pelvis - results were negative.
The pain not only continues but is worse. Doug is taking oxycodone 7 mg. If he sits or lies down for a time, the pain goes away, but resumes if he is on his feet.
This last Monday, the doc ordered a CT scan. Now, finally, we got an indication of what might be causing the pain. The scan shows "multiple irregular areas of demineralization." Basically thinning bone. There are several areas of lesions on the hip and proximal femur ranging in size from 1.5 cm to 3.8 cm. The usual contrast could not be given due to Doug's 'abnormal kidney function' (it has been stable for quite a while).
Tomorrow we have an appointment for a consult with an orthopod in a neighboring town.
Subscribe to:
Posts (Atom)
