Hi Kathy,
doing ok here, one day I'm fine the next feel like crap, glad your doing well.
Do you have any problems with respiratory infections? I seem to keep one and have for over a year. So days its not to bad and others days I am so sick I can barely stand it. Keep in touch on how your doing. Nancy

Hi! Kathy & Nancy,
I am doing well. I started with the start of a cold sore this past week, I called to see if I could get something to help it. I used to get one every 2-3 years, and hate them. They put me on Valacyclovir 3 times a day for a week. Other than that feeling great. Just had my 200 day post SCT testing, everything came in clear. I try to Thank God for everyday. Are you both still on Revlemid?
Ed

Hi Ed,
I stopped the Rev. Started it May 19 and stopped by the doctor's on July 12th and told them I wouldn't take it anymore. The side effects were too much. I was on it once before for 2 months and had to stop it then due to a very bad rash and sunburn like skin. This time the leg cramps were so bad I couldn't sleep or anything, never felt good, completely lost my appetite and was forcing myself to eat so I decided to get off of it. I am still on Dex and it works well by itself, did this once before too. Still have some side effects but nothing like the Rev. Glad to hear you are doing well. Nancy

Hi Nancy/Ed,

I'm on the Rev, and it will be part of my maint. drugs. I don't know how long I'll stay on it, as its really making me tired as well. I'm already tired most of the time anyway. Other than that, everything is good. Glad to see you guys are doing well.

Kathy

I have been on nothing since late february but my last blood test have my igg levels going up. They are still in the normal range though. If they continue to go up I either have to have the transplant or go back on revlimed. My PN is actually getting a bit better so I assume I can tolerate the Rev again. I am not looking forward to the the transplant even though I have already collected the cells for two of them. I actually see the Doc tomorrow.

By the way I too have been tired and I have off and on rib pain that has me on opiates. The Doc says she doesnt see anything on the xrays but sometimes at night it hurts really bad. for some reason it doesnt hurt as much during the day.

hi everyone, how's everyone doing? Chuck I see you mentioned rib pain, I have had rib pain for over a year now, at times it is so bad that it feels like someone beat me with a baseball bat, can't get comfortable no matter what I do, at other times no pain at all. I have been on Vicodin since Jan. 2010 for it. Doc says its part of the territory and they were suprised it actually took this long for it to start. I have had several full body xrays and the only lesion I have is on the left side of my skull, 1.6cm x 1.6cm x 1.2cm nothing anywhere else. I have been doing pretty good so far. Hope all of you are doing well. Nancy

Sorry it's been so long guys. Everytime I tried to log in, it stated account closed. We'll it's official. I'm in remission with 25mg of Rev daily for 3 weeks on/1 week off. I try to remember to drink as much water as possible, which keeps me up and down during the night. I'm also on daily potassium. daily acycovir, daily aspirin, daily b-complex and twice a week bactrum. I go once a month to the doc, starting next week to check levels and get a monthly dose of Zometa. Other than that, things are fine. Just glad I made this far and didn't have to go to transplant right away. I hope everyone is doing well and staying positive. Being positive is really the best medicine!!

Thats great news Kathy, Congradualations!!! Glad to hear you are able to stand up to the rigors of Rev. Are you working or taking the summer off? It has been a great summer up here. I really think the Zometa helps, I was on it every month after SCT and in remission. I now am getting it everyother month. My oncologist said it accumilates in your system, also it has a small effect on fighting MM.
Ed

I know I have been absent for a long time. The reason is that ever since I started Revlimid, I have been sick. I have had almost all of the side effects. My doctor reduced the dose to 5mg. This is a little better as I now have good days and bad days. I can tolerate the side effects better. I will be glad when I am off this medication and get my life back. I am hanging in there as best I can. I am happy so many of you are doing well.
Toots

Toots,
Sorry to hear your not feeling well. I was on 10 mg. I didnt know you could get 5mg. I did not tolerate it very well. I took the summer off and maybe for good. Are you in remission?

Thanks Guys. I'm still working, I don't have the luxury of taking off. But, I'm taking my vacation days and loving it. I stop taking the Rev as well. I'm so tired without it and they didn't reduce my dose. So, I'm still at the 25mg.

Hang in there Nancy. I just telll myself it's not as bad as before. I was in so much pain, and side effects were in high gear. It was awful. The Rev also has some taste side effects and try to get a lot of water. I mean all night long.

Hi Nancy,
I have very bad rib pain also. I tried vicodin and it did not relieve the pain. My oncologist put me on Morphine Sulfate ER 15 mg . This is a time release pill. It last for 12 hours. I take 1 pill every 12 hours. Now I have no rib pain and that is a blessing. You may want to ask your doctor if you could take this. You will not become addicted. Vicodin is more likely to be addictive than time release morphine.
I am still struggling with the Revlimid. I am on cycle 3. The side effects are less in this cycle. I still have diarrhea for 1-2 days once in this cycle. The weakness is still a problem. Now this is very strange but the neuropathy is less. It feels so good to sit and watch football without having to move my legs every few minutes.
My appetite is just a little better. I still have to push my self to eat. I have to eat small amounts at one meal. I try to get in 4 or 5 eating episodes each day. The worst is I gain 4 pounds and lose 5 pounds the next week. I drink Boost high protein drink once or twice a day..
I hope you are felling better.
Toots

Hi Guys,

I must say that this Rev is making me so tired. At my last visit my white count is down to 2.5. They are probably going to lower my dose. I'm tired of being tired, but complain too much. It could be worse. I hope everyone here is doing better.

Thanks for all of your support.

Kathy

Hi Kaparker,
Have you considered disability? I know that can be a hassel. I know I can not work. I am way to sick and to old. If I was not already in retirment and as young as you are, I would try the disability.I do not know how you can work as sick as you are. I am praying for you. I think of you as a good friend. Do you have any help at home? My husband is a great caregiver. I have taught him how to use the dishwasher, washer, dryer, and some cooking lessons. He is a king among men. I could not do all the things I usually do.
Toots

Hi Toots,

Yes, at first I did. I had just gotten this new position at work that comes with a lot of flexibility and a company car. I worked so hard to get there, that I didn't want to give that up. Also, our short-term last 6 months then its on to long-term for 1 year. I have the better insurance, so I just hung in there. When I'm ill, I don't go in or just work from home. If I had still been an admin, I would signed up for disability.

Thanks for all your prayers and support. They are greatly appreciated. I consider you a friend as well. Today I have a cold that's kicking my butt, so I'm at home.

Kathy