Chemo still on hold; PN still a problem

Last week our oncologist had phoned in a new prescription for the neuropathy since Lyrica didn't work. He wanted Doug to try Remeron (generic mirtazapine) 7.5 mg. Well that didn't work either. We are learning that sleep deprivation causes a host of problems! And Doug has developed short term memory loss on top of everything else.

Yesterday we drove to Denver for the monthly oncology appointment. Dr M, our myeloma specialist, was dismayed to hear the Remeron had not worked. He said to discontinue it. He said PN can take months to resolve. He said there are many remedies but everyone reacts differently - "different strokes for different folks". Now he wants Doug to start amytriptyline at 50 mg (at 25 mg it didn't work), and if necessary go to 75 mg, then up to a maximum of 100 mg. In addition, gabapentin 300 mg twice a day to start. That dose can be raised too.

The specialist gave us this list of OTC things to also try, in this order. He says try one, then add the next if necessary.
1. Vitamin B6 100 - 150 mg
2. Vitamin B12
3. alpha lipoid acid
4. glutamine
 Capsaicin cream (short acting but can help some)

He said acupuncture helps some people.
Cymbalta would be the next prescription if amytriptyline/gabapentin doesn't work.

I told Dr. M about Doug's short term memory loss, and he said that is probably due to Doug taking too much lorazepam. Doug says he will back off of that.

So we spent quite a bit of time talking about neuropathy before we even got around to discussing the myeloma! Dr. M wants to hold off on chemo if possible until Doug's neuropathy is under control and he is able to sleep better. He will watch the blood tests closely for myeloma numbers. When he does restart Doug on treatment, the drug will not be Velcade! He said he wants to do carfilzomib (Kyprolis) next.
Doug will keep getting the Zometa infusion every month, to strengthen his bones.

We felt this was a good visit. We are thankful to have such a good myeloma specialist who spends as much time with us as needed to make sure we understand.

I have a new iPhone app called Supernote; I tried it to record our conversation with Dr. M and it worked great! I always take notes but this will be a good way to make sure we get all the information down.

Love to all.

Peripheral Neuropathy; Stop Velcade

Doug's  back pain comes and goes and is not the main concern. It must be arthritis.  It seems extra-strength tylenol helps.

The last few weeks have been difficult. Doug has increasing fatigue and is sleeping poorly. He is eating less than usual due to the GI unrest and has lost a few pounds.

Over the last two weeks, he has developed peripheral neuropathy in his feet. At first his toes just felt numb, then it gradually progressed to pain. Sometimes pain in his legs. So I emailed the nurse navigator in Denver. She checked with the oncologist and he said to stop velcade for now, until we see him January 30. Doug is to continue taking cytoxan and dexamethasone.

Doug is very tired of all this and is worn down. I am getting tired too. We both are very glad to stop the velcade. Doug is at the end of cycle 5. We think the end is in sight; sure hope so! His blood counts are down quite a bit but still within the limits for CyBorD. We know many people have worse side effects.

So far we have escaped the flu. We are so thankful for that, as our town has been hit hard.

Love to all.

The faithful love of the Lord never ends! His mercies never cease. Great is His faithfulness; His mercies begin afresh each morning. 
Lamentations 3:22-23