Life or living with Multiple Myeloma

I am asking fellow multiple myloma sufferers to please let me know how they cope with this cancer?

These should be patients that did NOT have a stem cell transplant, as I at 74 am too old to have one.

I would like to know aproximately what I have to look forward too, be it good or bad.

Is there some normalcy while getting the chemo treatments? Has anyone lived with this for a while after treatments?

I feel weak and miserable.

Thank you

Liz

I have been in treatment since June, they started testing in April .I' m on Revlimid, steriods and Valcade . In the beginning it was horrid but as they progress it is getting better. Stomach is a mess from the Valcade. Am hyper from the steriods for 2 days. Sleep is something that last no more then 4 hours even with a pill. My doctor assures me that once the steriods stop,which is 6 more weeks things will get alot better. I will put up with it all as long as the pain is gone.

Hang in there it does get better!

Karen

Hi Liz,

I was diagnosed in May of this year. I have been treated with RVD, and I have responded very well.
I am able to do the things I enjoy. Keep the faith, and have hope.

My wife and I found it helpful to join a MM support group. It was very positive seeing folks who are living their lives, and enjoying.

Ron



Karen said:

I have been in treatment since June, they started testing in April .I' m on Revlimid, steriods and Valcade . In the beginning it was horrid but as they progress it is getting better. Stomach is a mess from the Valcade. Am hyper from the steriods for 2 days. Sleep is something that last no more then 4 hours even with a pill. My doctor assures me that once the steriods stop,which is 6 more weeks things will get alot better. I will put up with it all as long as the pain is gone.

Hang in there it does get better!

Karen

Thanj you so much Karen. It helps to hear how people feel and what the treatments are.

I had a horrible set back with the allergic reaction to Apurinol (misspelled?) which "killed" my kidneys and lungs. Two weeks in ICU and 4 weeks in a rehab place. Just home since Saturday after 6 weeks.

No chemo during this time and the oncologist pared down on some meds. Have to ask her why.

Until I became sick from that med. I worked and led a normal life but only had 2 weeks of chemo under my belt. Right now I stll feel very weak and not able to function normally. I can see progress though.

Good luck to you and all

Liz

Liz said:



Karen said:

I have been in treatment since June, they started testing in April .I' m on Revlimid, steriods and Valcade . In the beginning it was horrid but as they progress it is getting better. Stomach is a mess from the Valcade. Am hyper from the steriods for 2 days. Sleep is something that last no more then 4 hours even with a pill. My doctor assures me that once the steriods stop,which is 6 more weeks things will get alot better. I will put up with it all as long as the pain is gone.

Hang in there it does get better!

Karen

Thank you Ron and I am very happy for you for responding so well. It gives all of us hope that the medicines we are receiving do help. I never heard of MM before my diagnosis.

I just felt very tired and had to drag myself some days. I finally insisted on a blood test and "bam" there was the diagnosis.

confirmed after the bone marrow test.

Hope the best for all of us.

Liz



Ron said:

Hi Liz,

I was diagnosed in May of this year. I have been treated with RVD, and I have responded very well.
I am able to do the things I enjoy. Keep the faith, and have hope.

My wife and I found it helpful to join a MM support group. It was very positive seeing folks who are living their lives, and enjoying.

Ron

Liz, did you get my message?

Ann J.



■■■■■■■■■■■■■■ said:

Liz, did you get my message?

Ann J.

No Ann, I did not. Thank you .

Liz

■■■■■■■■■■■■■■ said:

Liz, did you get my message?

Ann J.

awesome post Liz!

Liz,

1st. of all, who told you, you were too old for stem cell transplant?

I'm 71, only 3 yrs. difference. Some 80 yr. olds are young 60's if your other organs are basically healthy. They use to have cut off age of 65. I sailed through my transplant with no problems to amount to anything. I'm doing good, oh, minor things like insomnia, hot flashes, things I can live with. You can't give up! Kinda sounds like you have. I've had MM be 4yrs. this Nov.

If your hospital won't do transplant- find one who will. Please respond! Hope to help cheer you up. Are you in lot of pain? It attacked my spine , even tumor coming out of sacral bone. I went from wheel chair to walking 1mile every other day.

Madison

Thank you Madison. I wanted to have a 2nd oppinion as to the treatment plan and now for sure I will, and discuss the posibillity of stem cell replacement. I am in the Philadelphia Metropolitan Area but would (probably) be wiling to travel. Especially to Baltimore (daughter lives there) if it is done there and not here.

I am very happy for you with your response. It cheered me and I am sure other MM patients as well. If one of us does well we all have hope that it may happen for us also. I am NOT in any pain so to speak. Just some in the back when I walk but my bones were ok. No "swiss cheese" the doctor said.

Have you or someone else have any kidney problems or heart problems. I understand that those are some after effects of the Valcade.

Thank you again and the very best of health to you and all.

Liz



Madison said:

Liz,

1st. of all, who told you, you were too old for stem cell transplant?

I'm 71, only 3 yrs. difference. Some 80 yr. olds are young 60's if your other organs are basically healthy. They use to have cut off age of 65. I sailed through my transplant with no problems to amount to anything. I'm doing good, oh, minor things like insomnia, hot flashes, things I can live with. You can't give up! Kinda sounds like you have. I've had MM be 4yrs. this Nov.

If your hospital won't do transplant- find one who will. Please respond! Hope to help cheer you up. Are you in lot of pain? It attacked my spine , even tumor coming out of sacral bone. I went from wheel chair to walking 1mile every other day.

Madison

Liz,

you can do this! That's what we're here for you for support. Lot of people have problems w/ heart & kidney that's not on any chemo. I took valcade I don't have kidney nor heart problems so far. Last took it 2yrs. ago. Knock on wood!

One must be careful who they listen to. Try to surround yourself with postive thinking people with postive attitudes. That so helps. Most of all- don't forget prayer that really helped me.

Madison

Thank you Madison. It's great to be part of this MM family. I am thankful to have found the site bacause I was looking for a support group. Never heard of Myeloma before. I agree with you. A good attitude is extremely helpful.

My spirits are good and I am not scarred of the future. I will take what comes - there is no choice.

Prayers are very comforting to me. I also always pray for others. If I hear a sad story, I immediately pray for that person and their family.

How long has it been since your diagnosis? I wish you the very best of health now and in the future.

My oncologist said there is no cure for MM at the moment, so we all will fall back at some time, but the options for additional treatments are increasing and that is very good!

Take care

Liz



Madison said:

Liz,

you can do this! That's what we're here for you for support. Lot of people have problems w/ heart & kidney that's not on any chemo. I took valcade I don't have kidney nor heart problems so far. Last took it 2yrs. ago. Knock on wood!

One must be careful who they listen to. Try to surround yourself with postive thinking people with postive attitudes. That so helps. Most of all- don't forget prayer that really helped me.

Madison

Liz,

Both my doctors have assured me that MM will not kill me. Made me feel alot better. As long as they can keep it under control I accept it. ANd next time my back starts to hurt I won't wait 3 months before seeing a doctor. I feel that attiiude has a lot to do with recovery. I have tried to stay positive thru this whole thing. I only have 6 more weeks of Valcade and steriods. Then he wants me to go to NYU to see if I am a candidate for stem cell harvesting.

I was never one to believe in the power of prayer but have changed my mind as I have a lot of people praying for me and I really think they have helped.

Karen

My doctor said the same thing. "It is treatable! " That is all I needed to hear. We will all put up with what is "dished" to us because we have no choice if we want to live, and truly who does not? Am I greedy though to also want QUALITY OF LIFE and not strictly QUANTITY. Our years left will be different because we will have set backs since there is no cure. Right now we all hope for remission. I am trying to push all other thoughts out of my mind.

Prayers are extremely important to me also. God sent me the grace of not being afraid. I actually cannot believe myself how calm I am.

Best wishes to you and all the other MM friends on this site.

Liz ( in PA)



"Karen said:

Liz,

Both my doctors have assured me that MM will not kill me. Made me feel alot better. As long as they can keep it under control I accept it. ANd next time my back starts to hurt I won't wait 3 months before seeing a doctor. I feel that attiiude has a lot to do with recovery. I have tried to stay positive thru this whole thing. I only have 6 more weeks of Valcade and steriods. Then he wants me to go to NYU to see if I am a candidate for stem cell harvesting.

I was never one to believe in the power of prayer but have changed my mind as I have a lot of people praying for me and I really think they have helped.

Karen

Liz,I hope this finds you well,I am from the Harrisburg area and have been under treatment since 7,2011. I am only 55 and will soon start the process for a transplant at hershey med center. Things do get better with velcade,dex and revlmid when you go into the maintenance phase.I have felt so well that I put off the transplant process so I could get prepared for. The doc at Hershey pa told me that he has done transplants for people from 20yrs old to 92,you must have at least 50% lung function and be fairly healthy. I have an appoitment with him on 11/5 and will schedule the start of things then. He has done in excess of 500 transplants with less than a 1% mortality rate. Most do not have many complications, however they do continue revlimid and zometa for 2 years . I did'nt go on maint. treatment until around June of this year, the highest sucess rates for the transplant are when your m protien numbers are low and under control. Just so you know, I feel great, do have a few side effects though, slightly numb fingers, some minor issues with nervous twitch of my fingers and slight feet dscomfort. In January life stunk as I could hardly walk and tired very easily. be persistant,life will be good again

Liz, if you want take a look at my page, there is better than a year of posts on how I felt and what the side effects were/are I did this for my own record and a way to vent without involving my family. Does'nt always make sense but you had to be there.

I want to take a minute to praise Vanderbilt Hospital in Nashville, TN. & Dr. Cornelius in Franklin, TN.

I honestly, wouldn't be here if it weren't for the amazing Oncology staff there. U. OF M hospital had been treating me for a year, doing nothing but giving me Zometa once a month. I was in so much pain begging for MRI but they said, I didn't need. I couldn't walk, I was in wheel chair. Vanderbilt found shattered tail bone, hip & malignant tumor coming out of sacral bone ( which U.OF M.said, was water filled cyst. It had been growing for a year. Vanderbilt immediately started radiation, 2 chemos with dexamethasone. Took me 5 months to get back home but I got off that plane walking & no wheel chair. I asked, for different Dr. at U. of M & they wouldn't give me one therefore I never went back. I go to Karmanos in Det. they're also wonderful. My daughter, living near Nashville, TN. helped. I've since had stem cell transplant & doing great. Had that at Karmanos in Detriot. Dr. Abdi & Dr. Zonder you're wonderful also.

Moral of this story: If you're not happy with your treatment -go elsewhere. It saved my life. U'of M I hope you read this,.

Madison

Gotta ask, is anyone else whose had stem cell transplant gotten horrible hot flashes, dry eyes or nerve damage in either eye? You can tell when you put drops in. You can't feel the drops. Getting ready to have cataract removal on one eye & concerned about healing process.

Don't get me wrong! everything else is so much better, pain,neuropathy, etc. Guess you can't have no side effects. I'D CERTAINLY do it all over again. I'M 71 hormonal hot flashes shouldn't be this xtreme. I was on Estrogen patch 17yrs. They took me off minute was diagnosed (blood pressure went down immediately) Had hysterectomy at 48. Like to hear from you if had stem cell & having hot flashes.

Masdison