On 1/2/2008
poppy/cath wrote:
Hi Susan~~ I read about Lyrica on this board about 18 months ago and because I developed neuropathy when first on Thalidomide and then had it increase when I was on Velcade I asked my doctor if he would prescribe it for me. Needless to say, this marvelous man was able to get several months of free samples from the drug company that makes Lyrica and I began immediately taking it. Within days I began to feel a huge difference and I continued taking it until the samples ran out. Unfortunately, here in Australia, this medication is not on the subsidised list and if I wanted to continue taking it I would need to pay approx. $250.00 per month. So, together with my doctor and after having a series of nerve tests (don't let Denys have them done unless she absolutely has to as they are terribly painful), I switched to a drug called Gabapentin which is used for people with epilepsy (as is Lyrica). The Gab. is not as effective as the Lyrica for I can still feel pins and needles in my fingers, but I do not have any pain in my hands. I am able to type, write, do origami, etc. - use my fingers - but the pins and needles are always there. With the Lyrica not only was the pain gone, but so were the pins and needles. Oh well, the Gab. only costs about $10.00 per month as I take one 300mg capsule per day -- less and the tingling increases. Over the past 12 months on Gab. my hands are livable and though I have tried to reduce the Gab. I find that I still need it. If money were not a factor, I would have continued on the Lyrica for it was perfect. Now I'm on Revlimid and I do not have any side effects apart from occasional lessening of appitite and my blood work is 'normal' with the last paraprotein recording being only 10 -- and I haven't needed a transfusion in well over 12 months. This past 17 months on Revlimid was the best thing ever for me and I hope that it will continue for many months to come!! I hope that Denys finds the same relief with Lyrica that I had and that you don't have the financial issues that we have here.
If she is having so much trouble with neuropathy, is there any reason why she has to stay on Thalid. or Velcade? Could she try Revlimid? I understand that patients must meet certain criteria before these drugs can be prescribed, but it was basically because of headaches, severe constipation, and neuropathy that I was taken off both Thalid. and Velcade. Certainly she can ask if they would consider her a suitable candidate for Revlimid. I also hate to hear that she is such pain -- isn't she able to use Durogesic patches or Ordine? Our pallative care nurses advocate that patients take enough pain medication so that they can live almost 'pain free'. Some people fear that they will be considered 'addicts', but this is not the case. I'm on high doses but as I've told others before, I'm never 'high' or 'off the planet' -- for when using these meds. for cancer pain you don't get those kind of effects. Gradually the dose has been increased to the point where I can effectively function without pain -- and after 16months I recently had to have the dose increased because I was beginning to feel the pain again. Even other medical people do not understand the effects of morphine on cancer pain and when I was recently hospitalised for pneumonia they had such amazed looks on their faces when administering these meds, not understanding how anyone could be taking as much as I do and not having any visable effect! Only I seemed to be aware that without the meds I wouldn't have been able to even lie in the bed without pain!
Finally I had to have radiotherapy done to both my femurs just before Christmas because I was having specific pain in the legs. The pain is now totally gone, but I did fear that I had ended up with problems with my bowel as a result of the radiation. Now I have found that this was misdiagnosis on my part. The bowel pain is a flare up of diverticulitis!! How quickly we assign cancer or cancer treatment to the cause of physical problems!! Now I am back on a diverticulitis routine and the pain is subsiding. Help Denys to look at her problems wholistically and to try and solve them from more than just a cancer perspective. Your support of your sister is admirable and she is certainly blessed to have you and your family's support. My thoughts and prayers are with you all and I do hope that the New Year is a better one for us all. Best wishes to you Susan, Cath
Hi Cath,
When she was first diagnosed August of 06 she was put on Revlimid. The Dr. took her off because her MM came down to 90% but this chemo stopped working from there.
That is when the hospital in Tampa wanted Denys to have a bone marrow transplant. The Dr. told my sister that there were High Risks and the success rates was lower. My family was already to test for her, but she felt the odds were to high against her and passed on this type of transplant..
This is when she decided to go to Little Rock UMAS and have a Stem Cell Transplant which she did. Like I said before , the transplant actually doubled her cancer.
I did ask Denys about taking Revilimid again along with the Velcade. I think she said she couldn't because her insurance company wouldn't cover this chemo again since she already tried it. My sister is very frugle and always worries about what is covered and what isn't.
IDenys husband said that she has been on Dex, but hasn't been on any chemo for a month now. Her Dr. has now been sayingthat the Velcade is causing problems along with her MM? This is not good, she needs to be back on a chemo. Her Dr. needs make a decision on what is next. That is why he crammed 3 weeks of radiation into 5 days. He said it himself she needs be on chemo and couldn't be off for that long. I pray they come up with the right mix.
Today she had a lump on her back which grew from the size of an egg removed today around noon time. We are all waiting for the biospy results. She found another small one but they only removed one right now. The radiation did absolutly nothing to shrink anything. I will let you know as soon as I find out after her Dr. consults with her. She has been sleeping all day in the hospital. Poor thing I know my sister hasn't slept hardly at all for a long while now and must have been up all night worrying. She is soo frightened.
As soon as I hear something I will let you know and also what her Dr. prescribes for her.
Thanks for responding to my posts, you really help me and I truly appreciate everything you and your husband have to offer.
God Bless you , you are truly angels
Susan