One patient with glioblastoma still alive nine years later
by DaveRI on Sun Oct 26, 2008 12:00 AM
My mother has been off of Velcade for about 7 weeks. It put the MM back into remission. And now she is still experiencing the side effects, just as much as when she was on it. Extreme fatigue, nauseaness, loss of appetite, restlessness and minor vomiting.
Can anyone tell me how long before these sides effects go away. The doctor said anywhere from one to two months, and two months is upon us.
Thank you for any help.
by poppycath on Mon Oct 27, 2008 12:00 AM
Not to be negative Dave, but I was very sick after Velcade for almost 4 months. I lost a huge amount of weight because of nausea and vomiting as well as spending most of my day in bed. Ultimately the side effects stopped, but when this happened my paraprotein level started to climb so I lost all of the goodness that I had gained while being on the Velcade. Fortunately I was a suitable candidate for Revlimid and once I started that the levels magically dropped and I have never felt better since the time I was diagnosed. That was more than 2 years ago and things are wonderful now!!
Hang in there, this too will pass!! Then, if she needs something else consider trying Revlimid! Best wishes, Cath
by kpupfight on Mon Nov 03, 2008 12:00 AM
I was very relieved when I read your message.
My father was diagnosed in February and finished Velcade treatments in August. He is currently in a rehabilitation center trying to regain his strength and recovering from a spinal tumor (learning to walk again).
The recovery has been very slow due to stomach issues. He is not gaining weight and is still apprehensive of food due to nausea and the food goes out as fast as it goes in ;o) He also complains about tightness in his stomach and the dr's can't seem to figure out the cause. All the tests have come back negative (MRI & CT Scan). One dr. believes it could be nerve related. Has anyone experienced this?
He is getting a little stronger, but we just learned that after Thanksgiving he will need to start Revlamid to keep his levels down. I have been reading to find out what type of side effects he might experience. I am hoping he won't lose the progress he has made once he starts the chemo again. Hearing he had to start all over again really upset him, so I am hoping it won't be as rough as the Velcade.
Reading your blogs really help..thanks!
by UTboy on Mon Nov 03, 2008 12:00 AM
FWIW.......I had a tumor crushing my spinal cord...mine at the T-1/T-2...and now have discomfort in my throat, stomach, and mid shoulder blades. I've been scoped; done the swallows; and had all the imaging; nothing found to explain the discomfort. I'm pretty sure my problems are nerve related. The tumor caused some minor damage to the bone. I currently take velcade, rev, and dex as part of a maintenance treatment....I also had tandem transplants
Best to you and your family
by poppycath on Tue Nov 04, 2008 12:00 AM
Hi! I found one of the best ways to get back into regular eating was to have plates and bowls of food handy for nibbling at all times! By this I mean some sultanas (raisins/dried fruit/candied fruit), some chocolate, cut up apple and cheese, a scone, cookie, sandwich, fruit, cut up into small pieces-- bits and pieces that might just be handy to nibble at any time -- my husband and daughter prepared them and replaced them throughout the day -- somehow by just eating a mouthful several times a day my tummy gradually stopped just throwing it all up and I could gradually eat more and more. Now I eat one meal a day, and have a coffee for breakfast and then a few nibbles like cheese and crackers for lunch with a banana in between. After losing 50kg through the Velcade I have now gained about 25 back in the past two years.
As I said before, Revlimid was the best thing that has ever happened to me and I've been going strong for 26 months!! The only side effects that I have experienced have been a mild nausea -- just not being eager to eat, so I need to make myself eat to keep up my strength, and a slight tingling in my fingers, and more recently some cramping in my calves. But thats NOTHING compared to the side effects that I had with all the other drugs I was on!! I only hope that the Revlimid keeps working for me because thats all that is keeping me alive now, and I don't think that there is anything else that will be as effective when the Revlimid fails --- and fail it will, I know that it is just a matter of time. Its usually good for people for 14 months, so I'm already way past the use by date, but I'm just keeping these fingers crossed!! So, hang in there with helping him to regain some of his lost weight -- he's still alive because he had weight to lose and he needs to regain it so that he's ready if/when it happens again -- and then hopefully the Revlimid will be as good for him as it has been for me. I sincerely wish you all the best -- if there is anything I can help you with, please do not hesitate to contact me -- I've been through all of it, with the exception of the transplant, so I can speak from experience on most myeloma related topics!! My thoughts and prayers are with you both, Cheers Cath
by kpupfight on Tue Nov 04, 2008 12:00 AM
Thank you very much for your responses. I am taking this all in. As I mentioned my Dad is fairly newly MM diagnosed and things have happened so fast, we are all trying to get our bearing, between learning about treatments, finding medical professionals that will help (lots of red tape) with health insurance, primary care doctors for seniors and medical bills sometimes it's hard to tell what direction to go in. My Dad had never been sick prior to this and he is 72, so we have been very fortunate.
After Thanksgiving he will start the Revlamid and I hope he has as much success as you have had. I am trying to get a head start to learn about the side effects we might run into in advance this time. We definitely weren't prepared for all the effects of the Velcade and spinal tumor recovery.
Thank you for the eating tips! My father is currently in a rehab facility and the food is terrible, so it's not helping matters much. We try to bring him lots of snacks, but he's not good about forcing himself to eat them if we aren't there hovering over him. He will be coming home just as he starts his Revlamid, hopefully being home will help with the eating, if the Revlamid doesn't make it worse...we'll see.
By any chance do you have any swelling of your feet with the Revlamid? With the Velcade and Dexadron, this was a big issue for my father and I am hoping that won't come back with the Revlamid. I did read about some folks having issues with itching and dosage, did you face this? I think he will be on the 25mg for 21 day rounds.
Sorry for all the questions and long post...it's just great to be able to chat with people that understand these issues 1st hand..I'd been looking for a message board on this topic for months.
Thanks again for message. It is wonderful of you to share your knowledge and I wish you well!! Your kindness is much appreciated :o)
by poppycath on Thu Nov 06, 2008 12:00 AM
I'm happy to share any information that I have, but I do have a couple of questions for you -- are you living in the USA? And what is your name? I only ask because I find writing to kpup a bit strange and where you live matters a great deal with regard to how you get Revlimid. If you prefer not to put this information onto the general messge board, then please use the 'private reply' button and then the message will only come to me and no one else will be able to read it!
I have just received a new publication on Revlimid that is published by Celegene and titled "Getting started with Revlimid". It is a guide for patients, their families and caregivers and, best of all, it is FREE!! If you contact Celegene I'm sure that they'd send you one - I received it from my Statewide Myeloma organisation down here! Also, the International Myeloma Foundation (IMF) has a good pamphlet on Revlimid. In fact, they also have a FREE bundle of information on Multiple Myeloma that can be ordered online which is extremely useful in many areas!! Both lots have good info on side effects both the serious and non serious types of side effects. I started on 50mg, dropped the second month to 25mg, and went down to 10mg in the third month -- all because of my blood read outs. I've been on 10mg for 2 years now with fantastic results -- the way we measure paraprotein is different from the US, but mine is now 6 which in the US is at the very bottom of the measuring scale -- almost unmeasureable! However, when mine was 90 I was told that many other people would have been near death with 'sticky' blood and many other yucky problems, but apart from being extremely tired I didn't experience any!! This is such an individual disease -- so different for each and every one of us!!
Keep encouraging your dad with nibbles -- just a bite of this or that, anything that he will try. And if he just eats one bite, that's all that is necessary -- its one more than he had before!! Somehow by eating one bite every now and then it allows your tummy to recover and you don't vomit constantly. So, focus on small plates or bowls with just a couple of bits in them -- a few segments of an apple (skin off), some segments of an orange or mandarin, a handful of grapes, half a banana, -- you know what I mean. If you have to throw them away, don't worry - what does it matter? Try again in the afternoon -- maybe a couple of finger slices of cake or a couple of one bite cookies or some crackers and some bits of cheese -- with only a smile from you the giver (no pressure) -- its no trouble. I know that part of what made me eat was the fact that my loved ones had made such an effort for me -- and they kept on doing it -- so that I just had to try to eat a little bit of it to make them happy and to thank them for all that they were doing and had done!!
Funnily enough though, when I then did regain some of my appitite I started eating in a fad type way, and those fads were really strange!! For a while it was green apples and jarlesburg cheese, then I only wanted small containers of tiramasiu, then bite sized custard cream puffs from Safeway (8 a day!), then asperagus, and the list goes on and on over the past 18 months. I once read about an experiment that was done with babies where they were given TV dinners every night for a month. At first they only at the desserts, then they switched to the vegies, and finally the meat. When they calculated the totals at the end of the month the scientists found that the babies had eaten a totally balanced diet after 30 days, but not each day. I think that my body is now doing the same thing and I just follow what I crave which has been keeping me healthy - along with all my protective behaviours regarding avoiding contamination from others who are ill and staying away from large crowds of people!!
Enough from me for now -- don't worry too much at this point as nothing will happen until after Thanksgiving! Enjoy the days you have to their fullest -- take him SMALL nibbles everytime you see him - together with your smile that's all he needs right now!! Keep learning as much as you can about MM and Revlimid so that you are up to scratch before you start, but don't make your study of MM your life! Live your life, make the most of all the time you have with your dad - laugh, love, be happy and smile -- Enjoy!! I was told I'd only have 2 years - that was 6 years ago and I still celebrate everyday and make the most of all that I can. Last Christmas was the first one that I celebrated without thinking 'This may be my Last Christmas' and this one will be so different from any of my others because I will be away from home, at my youngest daughters home, getting ready to babysit my youngest grandson while she goes off to have her second child -- TWO babies I never believed I'd live to see. There is always something unexpected on the horizon to look forward to!! Boy have I rambled on...sorry!! Cheers, Cath
by kpupfight on Wed Nov 12, 2008 12:00 AM
Thanks so much for you message! You are a wonderful wealth of support and information. Your positive attitude is absolutely inspiring! How exciting to have new babies for Christmas :o) enjoy, enjoy!
To answer a few of your questions ...My name is Anne and we are in the U.S. We are currently working on getting approval for the Revlamid. Thank you for you all your tips! They sure are and will continue to come in handy.
Last week was great - My Dad ate a whole bowl of spaghetti and actually enjoyed it! He called me today and said he is ready for another bowl this Friday when I visit. I think the PT is making him hungry...finally :o)
By any chance did you have trouble with milk? I have noticed on the days he tells me his stomach is bothering him, he started off the day with cerceal and milk. The hospital originally took him off dairy, but he has starting having small amounts.
We are preparing for him to come home from the rehab within the next week or so. He has made some progress with his walking, but still has a long way to go...once again his eligibilty has run out where he is now. What a struggle insurance and eligibility has been. He will be coming to stay with my husband and I. His caregiver helped him with his first round of chemo and is not able to take him back home. We will do our best to help him through this next round. I am hoping he will be able to continue his PT while on the Revlamid and pray he takes to the medication as well as you and the others I have read about.
Once again thank you!
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