Sleeping better!

Good news and not so good news.

The really good news is that Doug is sleeping much better. The combination of gabapentin and amitriptyline is working for the neuropathy. We have also added vitamins B6 and B12, on the theory of 'it can't hurt'. His toes and bottoms of feet are still numb, but as long as he can sleep the numbness is tolerable. And he walks like a duck but who cares?
We saw the foot and ankle specialist today; he sees PN in some of his patients. He tested Doug's feet and toes with a slightly stiff nylon needle-like thingy. Doug couldn't feel it. He cautioned Doug not to go barefoot because he could step on something and not even know it. He said he sometimes sees improvement in PN after a whole year.

The results of the latest myeloma panel blood test came today. Comparing it to the last two months, we see a slow but steady rise in the cancer numbers (Lambda light chains). Of course this is not good. But the numbers are not at the alarming stage yet, and hopefully won't be for quite a while. It would be great if the oncologist would keep chemo on hold for the next few months. At least there is a plan on what drug to use next.

So we are doing just fine for now. It's important to enjoy the present and not worry too much about the future.

Love to all.

“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

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.