Anyone With Velcade (bortezomib) Experience
Comments
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pain in hands and feet - please help memommynus said:hands and feet
I finished my last chemo with Velcade about three weeks ago and have been having problems with severe pain in my feet, hands, and legs. The pain can be anything from feeling like they are frozen or burning. I am interested in finding out how the nuerontin worked for you as I am going for my Dr. appt. and would like to ask about this for me. Tomorrow I am having my marrow tested gearing up for my transplant that is coming in the very near future. If anyone has any more advice on how to deal with the pain in hands and feet, especially at night please let me know. By the way I am a 43 year old woman and I know this is typically an older decease but I would love to also hear from anyone in this age brackett to see if having any common problems with the Multiple Myeloma. Good luck to all your in my prayers.
Hi to all those with MM,
I am currenly under going treatment with Revlimid 15g and Velcade and am having this side effect. At times, not all the time, there is a tremendous amount of pain that emanates from my feet and I just don't get why and all I can do is look up at the sky and say please help me. All I've been doing for the pain is taking ibuprofen and even that doesn't seem to always work.
I have plans to see a podiatrist.
So to all those with this same symptom please tell me how I can help myself. Many of you have been through this before. Please, help me.0 -
pain in feet and hands , side effect of Velcadepspin0401 said:pain in hands and feet - please help me
Hi to all those with MM,
I am currenly under going treatment with Revlimid 15g and Velcade and am having this side effect. At times, not all the time, there is a tremendous amount of pain that emanates from my feet and I just don't get why and all I can do is look up at the sky and say please help me. All I've been doing for the pain is taking ibuprofen and even that doesn't seem to always work.
I have plans to see a podiatrist.
So to all those with this same symptom please tell me how I can help myself. Many of you have been through this before. Please, help me.
A podiatrist will not be able to help you.
Side effects from velcade and revlimis will last for many months after your final dosage.
My husband experiences pain like yours everyday.
He is on around the clock pain killers.
Gabapentin 300mg capsules for numbness(neurotin)
dologesic tablets for aches and pains .
Also i do a lot of massages daily.0 -
very much like youJesCheckn said:Hi,
I just started my 3rd cycle of Velcade, Cytoxin, Dexamethasone on Monday, 11/209. Not sure why, but I haven't had much in the way of side effects in my hands nor feet. The worst side effects I've had that are not bad enough to warrant treatment are slight nausea and mild fatigue. I have had constipation problems, but found that Philips tablets remedy that issue.
I'm 47 and had my first plasmacytoma (precursor to MM) at age 37. 80% of plasmacytoma patients progress to MM in the first 10 years, and my 10 years would have been up in Feb. 2010, but a PET scan revealed 5 lesions on Aug 31, 2009.
Because I'm younger than the "average" MM patient, I was referred to a stem cell transplant specialist, and those steps have now been put in motion. I'm hoping to have the stem cell transplant before the end of the year.
Good luck and many prayers to you, as well!
in 2002 I was diagnosed with MGUS which can turn into MM. all of my bone marrow biopsys were ok until this year. My m-spike was very high. All of my numbers now reflected MM. I am 53 which is also much younger than normal. I do not have any lesions therefore it is stage II, but I do have the chromasone 13. I have been referred to a stem cell specialist as well. I have finished 3 cycles of velcade. Just this week my oncologist has added revlimid to try and bring down the numbers faster so I can receive the transplant. Just taking each day at a time.0 -
Valcade the killersylbates said:Just would like to say Velcade has done more harm than good. He is in critical care at the hospital. He is extremely fatigue, and has not had any bowel movement in more than 2 weeks. These are couple of the side effects from Velcade. In terms of his cancer result, absolutely no good result from it!
Hi. to any one reading this. My father died last year because he was on Valcade. What the doctors do not tell you is that you could be one to get the worst kind of side effects. The side effects are what killed my father not the cancer. The side effects ranged from vomiting blood because the valacede had ruined my fathers neuropathy to not being able to use his hand or legs and constant low blood pressure. Please do not always take medication based on what doctors tell you. When offered something new please do your own research before taking it. There may be other methods such as diet that may help instead. Valacde is not the wonder drug they advertise it to be. From what I have seen the elderly have the worst side effects after using this so called wonder drug. My father was only 65 at the time. Also remember its about statistics and money not about the individual person in an hospital.0 -
velcade
I am a 56 year old female diagnosed two + years ago with MM. I was in acute renal failure with fractures of the ribs and vertebrae when diagnosed. I was immediately treated with velcade and dexamethasone, after four months was sufficiently ready for a stem cell transplant. Velcade essentially saved me from complete renal failure and put me in remission. It does have it's side effects -- the most unpleasant of which was severe bone pain, I was also having to be treated for shingles, which is a common side effect. However, looking back - I attribute Velcade for getting me to where I am today - 2.5 years after stem cell transplant and continued remission.0 -
Same with mephilmorg said:velcade
I am a 56 year old female diagnosed two + years ago with MM. I was in acute renal failure with fractures of the ribs and vertebrae when diagnosed. I was immediately treated with velcade and dexamethasone, after four months was sufficiently ready for a stem cell transplant. Velcade essentially saved me from complete renal failure and put me in remission. It does have it's side effects -- the most unpleasant of which was severe bone pain, I was also having to be treated for shingles, which is a common side effect. However, looking back - I attribute Velcade for getting me to where I am today - 2.5 years after stem cell transplant and continued remission.
Valcade and dexamethasone are two drugs they use together that has produced very good results, for me anyway. Side effects are inevitable, how much and our tolerance is the varying factor of moving forward or trying something else. I also experienced bone pain during my treatments on the frist quarter of 2009. Now on a 3 year maintenance I take Valcade weekly, Revelimid daily (21 of 28 day cycle), and dexamethasone on Valcade days. I was very fortunate not to get shingles although it was not uncommon.
Everything I have read, articles and postings, lead to the amazing results of Valcade in combination with dexamethasone. I am sure the side effects and individual tolerances will keep some from being able to use Valcade. I have neuropathy in my feet where I don't feel temperature from the bottom of my feet. My wife had to tell me to get off the hot concrete and put on some shoes because the concrete was so hot you couldn't stand on it. I experience feet and ankle cramps for two days after I receive Valcade (I take muscle relaxers for the night). So even though I experience some discomfort and abnormalities I try to persevere knowing the benefits are greater than my discomforts.
It's certainly not a road I wanted to travel but this was the cards dealt, so I can fold or play the hand the best I can. Besides, God has been with me every step of the way and I make sure we talk often. I don't get all the answers or requests I ask for, many times I do, but He's there to get me through no matter what!0 -
This comment has been removed by the ModeratorJesCheckn said:Hi,
I just started my 3rd cycle of Velcade, Cytoxin, Dexamethasone on Monday, 11/209. Not sure why, but I haven't had much in the way of side effects in my hands nor feet. The worst side effects I've had that are not bad enough to warrant treatment are slight nausea and mild fatigue. I have had constipation problems, but found that Philips tablets remedy that issue.
I'm 47 and had my first plasmacytoma (precursor to MM) at age 37. 80% of plasmacytoma patients progress to MM in the first 10 years, and my 10 years would have been up in Feb. 2010, but a PET scan revealed 5 lesions on Aug 31, 2009.
Because I'm younger than the "average" MM patient, I was referred to a stem cell transplant specialist, and those steps have now been put in motion. I'm hoping to have the stem cell transplant before the end of the year.
Good luck and many prayers to you, as well!0 -
I think that 80% in 10 yearsJesCheckn said:Hi,
I just started my 3rd cycle of Velcade, Cytoxin, Dexamethasone on Monday, 11/209. Not sure why, but I haven't had much in the way of side effects in my hands nor feet. The worst side effects I've had that are not bad enough to warrant treatment are slight nausea and mild fatigue. I have had constipation problems, but found that Philips tablets remedy that issue.
I'm 47 and had my first plasmacytoma (precursor to MM) at age 37. 80% of plasmacytoma patients progress to MM in the first 10 years, and my 10 years would have been up in Feb. 2010, but a PET scan revealed 5 lesions on Aug 31, 2009.
Because I'm younger than the "average" MM patient, I was referred to a stem cell transplant specialist, and those steps have now been put in motion. I'm hoping to have the stem cell transplant before the end of the year.
Good luck and many prayers to you, as well!
I think that 80% in 10 years you are referring to is for the Solitary Plasmacytoma of the BONE which has a very hight rate of progressing to MM unlike Extramedullary plasmacytoma which has a progression rate of 11-30% within 10 years and SBP has a 100% progression within 15 years.0 -
I am a 46 year old female,Rory1987 said:I think that 80% in 10 years
I think that 80% in 10 years you are referring to is for the Solitary Plasmacytoma of the BONE which has a very hight rate of progressing to MM unlike Extramedullary plasmacytoma which has a progression rate of 11-30% within 10 years and SBP has a 100% progression within 15 years.
I am a 46 year old female, so not only younger, but also opposite sex of the average MM patient. I am presently on my 3rd cycle of Velcade, and Dexamethasone. So far, the reduction in my M-proteins has gone down about 80% as of end of round 2 of chemo. So Velcade really is a miracle drug in my opinion. I had mild side effects, rarely some neuropathy, and some nausea, but only after starting up the next round, after my week off (i go twice a week for two weeks, then a week off). I am also being scheduled for a bone marrow transplant, but after meeting with the tranplant team, and hearing about the process and the risks, I am rethinking this idea! Anyone with positive/negative opinions on tranplants? I heard the chemo they want to use (Malphalan) increases your risks of getting leukemia, which is NOT treatable like MM. And the risks of death during chemo is 1-2%, still too high for my liking!
I'm stressed to the max with this!!!0 -
MM and Young and FemaleyoungMM said:I am a 46 year old female,
I am a 46 year old female, so not only younger, but also opposite sex of the average MM patient. I am presently on my 3rd cycle of Velcade, and Dexamethasone. So far, the reduction in my M-proteins has gone down about 80% as of end of round 2 of chemo. So Velcade really is a miracle drug in my opinion. I had mild side effects, rarely some neuropathy, and some nausea, but only after starting up the next round, after my week off (i go twice a week for two weeks, then a week off). I am also being scheduled for a bone marrow transplant, but after meeting with the tranplant team, and hearing about the process and the risks, I am rethinking this idea! Anyone with positive/negative opinions on tranplants? I heard the chemo they want to use (Malphalan) increases your risks of getting leukemia, which is NOT treatable like MM. And the risks of death during chemo is 1-2%, still too high for my liking!
I'm stressed to the max with this!!!
Hi. Welcome to the boat, leaky though it may be. I know how you feel being the only young female in a waiting room full of old men. They're all buddies chatting and it can be rather isolating. So, Velcade/Dex. I had velcade/dex/doxil right after I was first diagnosed in Feb 2007. When I was diagnosed my bone marrow was 99% involved-stage IIIA. Five rounds of the treatment put me into partial remission. Then in July 2007 I had an allo pref stem cell transplant (stem cells from sister). That put me into complete remission and gave me over three cancer-free years (I'll tell you later about the transplant drugs...ugg!). Then in Oct 2010, as MM ALWAYS DOES, it came back. They tried Revlimid but it was too hard on my kidneys (I have Bence-Jones Light Chain MM-shredding my kidneys) so today I started on velcade/dex. I'm hoping it will do the same as before. I'm dreading the dex more so than the velcade. Dex can make you crazy for a few days...no sleep...then the crash. You're welcome to email me if you have any questions or just want to "chat". I hope your treatment is going well and you're feeling good.0 -
Transplant or not to transplantyoungMM said:I am a 46 year old female,
I am a 46 year old female, so not only younger, but also opposite sex of the average MM patient. I am presently on my 3rd cycle of Velcade, and Dexamethasone. So far, the reduction in my M-proteins has gone down about 80% as of end of round 2 of chemo. So Velcade really is a miracle drug in my opinion. I had mild side effects, rarely some neuropathy, and some nausea, but only after starting up the next round, after my week off (i go twice a week for two weeks, then a week off). I am also being scheduled for a bone marrow transplant, but after meeting with the tranplant team, and hearing about the process and the risks, I am rethinking this idea! Anyone with positive/negative opinions on tranplants? I heard the chemo they want to use (Malphalan) increases your risks of getting leukemia, which is NOT treatable like MM. And the risks of death during chemo is 1-2%, still too high for my liking!
I'm stressed to the max with this!!!
I do know someone to put you in contact with - she runs the MM support group in St. Lous. Diagnosed at 39 - no transplant - 11 year survivor. Her sitution sounds like she evolved into no transplant - started chemo for the transplant and the injections to stimulate stem cells but had such a difficult time, she stopped it - This again was 11 years ago when treatment was different.My sister-in-law gave us the number of someone she knows that is an 18 year survivor, no transplant. I am still trying to get a hold of her. My husband and I are now at the same
point you are - he was diagnosed in May 2011 was on a cocktail of velcaid/dex/revlimid and went into clinical remission within 60 days. I have been researching whether to have the transplant or not - also had a second opinion. The second opinion (outside of our city) told us to harvest the stem cells while he is clean, go on 4 more rounds of chemo, and we would probably be back in one year for a transplant. His neuropathy has been so bad, 4 more rounds of chemo is not an option at this point. We have to let them know today our final decision
I don't know about your experience, but all of the doctors use 5 years for a marker. I do not think they follow long term survivors and I don't think anyone is tracking transplant vs. no transplant. It is frustrating to say the least and makes it difficult to make a decision!!0 -
Thanks for your comments. Ikarebare said:Transplant or not to transplant
I do know someone to put you in contact with - she runs the MM support group in St. Lous. Diagnosed at 39 - no transplant - 11 year survivor. Her sitution sounds like she evolved into no transplant - started chemo for the transplant and the injections to stimulate stem cells but had such a difficult time, she stopped it - This again was 11 years ago when treatment was different.My sister-in-law gave us the number of someone she knows that is an 18 year survivor, no transplant. I am still trying to get a hold of her. My husband and I are now at the same
point you are - he was diagnosed in May 2011 was on a cocktail of velcaid/dex/revlimid and went into clinical remission within 60 days. I have been researching whether to have the transplant or not - also had a second opinion. The second opinion (outside of our city) told us to harvest the stem cells while he is clean, go on 4 more rounds of chemo, and we would probably be back in one year for a transplant. His neuropathy has been so bad, 4 more rounds of chemo is not an option at this point. We have to let them know today our final decision
I don't know about your experience, but all of the doctors use 5 years for a marker. I do not think they follow long term survivors and I don't think anyone is tracking transplant vs. no transplant. It is frustrating to say the least and makes it difficult to make a decision!!
Thanks for your comments. I completed 4 cycles of Velcade/Dex with barely any side effects, had my stem cells collected a few months ago and awaiting transplant. However, about 3 weeks after stopping Velcade, I started having severe leg/thigh and foot (heel) pain. From what I can see from these posts, it seems to be fairly common. I can go days without any pain, and just when I think it's all over, I get another bout of it, some days I can barely walk. Doc doesn't know what is wrong, they don't seem to think it's Velcade. My MM is in remission as of now. I will be having a stem cell transplant soon. I just hope my leg pain goes away before the transplant. I too debated between transplant or no transplant, but was told my chances were better if i got the transplant earlier on, rather than later. I want all the chances possible on my side. If there was a clear choice, it would be so much easier. Every patient is different however, which makes it difficult to say what is best for MM patients.
Very frustrating for sure! Looking forward to the day a "cure" is found so that all this can be behind us and we wouldn't have to worry about making such complicated decisions.
God bless you all.0 -
HELP MM PATIENT!!GregK said:I (54 years old) just took three cycles of Velcade combined with Dexamethasone, October 4th to Dec 23rd, 2004. I had between 40-45% involvement of MM cancer cells in my bone marrow biopsy. Three rounds of Velcade brought it down to 10-15%. So it worked very well.
I got side effect of severe rash on trunk of my body, which took four months to go away and neuropathy. The neruopathy is still being treated with Nuerontin. It has been very painful and is focused mainly on pain and burning in my feet. This past week I feel much better and it might be going away...although very slowly.
We followed Velcade treatment with autologous Stem Cell Transplant which brought me down to 10-15%. Before the transplant I had high dose chemo (cytoxin for harvest and melphalan before transplant). This was done in January 2005 to mid Feb 2005. Stem Cell transplant zero day was Feb 17, 2005 and I am now at Day 97 past the stem cell transplant.
This brought me down to 5-10% involvement of MM cancer cells in bone marrow biopsy and was described as a "partial response"...which is supposedly greater than 50% of bad cells went away, but not more than 90%.
I am working with dr on next step.
Right now the next steps looks like Thalidomide then another Stem Cell Transplant (they got enough cells for me to do at least one more transplant).
Please feel free to e-mail me for more particulars on the Velcade/Dex treatment. I would be glad to share any of my experiences that may help you.
I am searching for information from people that have taken Thalidomide. Particularly, I am trying to judge the risk of getting permanent neuropathy that can, as my dr discribes it, "be a disaster".Dear Greg, I realize it has been 11 years since your posting but I am anxious to get information from someone who has experienced Multiple Myeloma. My brother had a stem cell transplant on September 1st ... now 59 days into his 100 day, he suffers from fatigue. His biggest complaint is from Neuropothy in his feet. Doctors have tried everything from medications to creams to acupuncture. Is this something you suffered with and did it resolve itself? Doctors are unclear about the degree it will (or will not) get better. My brother will not come on this website and I have been posting for several weeks trying to find information. I had breast cancer 6 years ago and found this website extrememly helpful. I am hopeful you will be able to provide some insight into the future and help to make my brothers life better, I look forward to hearing from you soon.
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Velcade, cyclophosphamide, Dexamethasone
Went on this cocktail for emerging stage 1, after Smoldering MM diagnosis. Starting at 3.9 (39%) malignant plasma cells, after 5 months was at 1-3% for a very good response (VGR). I have now been on maintenance treatment (Velcade only) once every 2 weeks. This has continued for an additional 3.5 months for a reduction to 1% plasma cells. I am at this point scheduled for this maintenance for an additional 2 months. The Dr. said they intend to continue maintenance (Velcade every two weeks) till I reach 0% and then an additional 3 months, if still at 0%, discontinue maintenance for monitoring the level of Plasma cells. I initially was told a 3 month treatment, then increased to 5 months, now at least 9 months of maintenance (Velcade every 2 weeks). Perhaps I should be happy with my results compared to some of the poor souls on this forum, but I am not feeling strong, really worse than when I started treatment, and see no end in sight to this toxic treatment that robs me of energy, creates considerable neuropathy and I feel is making me depressed. Any suggestions? Or am I just a cry-baby? Good luck to all...I am seeing this is some serious ****!
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Pain in legs and feetpspin0401 said:pain in hands and feet - please help me
Hi to all those with MM,
I am currenly under going treatment with Revlimid 15g and Velcade and am having this side effect. At times, not all the time, there is a tremendous amount of pain that emanates from my feet and I just don't get why and all I can do is look up at the sky and say please help me. All I've been doing for the pain is taking ibuprofen and even that doesn't seem to always work.
I have plans to see a podiatrist.
So to all those with this same symptom please tell me how I can help myself. Many of you have been through this before. Please, help me.I started velcade treatment for MM in 2013. It worked but damaged the nerves and muscles in my legs, so I have to use a walker. I also see a podiatrist as well as my hemotologist/oncologist. I take hydrocodone for pain.
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Podiatristmeloasia said:pain in feet and hands , side effect of Velcade
A podiatrist will not be able to help you.
Side effects from velcade and revlimis will last for many months after your final dosage.
My husband experiences pain like yours everyday.
He is on around the clock pain killers.
Gabapentin 300mg capsules for numbness(neurotin)
dologesic tablets for aches and pains .
Also i do a lot of massages daily.I go to a podiatrist because my feet were damaged by the chemo.
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Neuropathy in legs and feetDangerdan said:Velcade, cyclophosphamide, Dexamethasone
Went on this cocktail for emerging stage 1, after Smoldering MM diagnosis. Starting at 3.9 (39%) malignant plasma cells, after 5 months was at 1-3% for a very good response (VGR). I have now been on maintenance treatment (Velcade only) once every 2 weeks. This has continued for an additional 3.5 months for a reduction to 1% plasma cells. I am at this point scheduled for this maintenance for an additional 2 months. The Dr. said they intend to continue maintenance (Velcade every two weeks) till I reach 0% and then an additional 3 months, if still at 0%, discontinue maintenance for monitoring the level of Plasma cells. I initially was told a 3 month treatment, then increased to 5 months, now at least 9 months of maintenance (Velcade every 2 weeks). Perhaps I should be happy with my results compared to some of the poor souls on this forum, but I am not feeling strong, really worse than when I started treatment, and see no end in sight to this toxic treatment that robs me of energy, creates considerable neuropathy and I feel is making me depressed. Any suggestions? Or am I just a cry-baby? Good luck to all...I am seeing this is some serious ****!
i was put on velcade treatment in 2013. It helped my numbers and I am now in remission, but it damaged the nerves and muscles in my legs and feet. I will be 77 this month. I take hydrocodone for pain and trintillex for depression and anxiety. Try to stay busy with activities, and my husband is a great caregiver.
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Velcade
I was diagnosed in 2010 and have been on a weekly Velcade treatment every week...( velcade 2.6--Dex 10.5--and kytril (anit-nausea). My numbers have been great and average below 2500. When first diagnosed I was told they wanted to give me Revlamid but my body did a major shiver telling me not to take it. So for me the Velcade is doing good...no neuropathy anywhere, but I do get tired. When I think about MM I remember the early years of Leukemia where there was only one type...now it's many different types of leukimia. I feel this will be the stroy of MMJ..I was lucky when diagnosed and still am lucky. So hang in there and whatever works for you is good...just listen to your doctor and fight for what you feel is right no matter what the DR's say.
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I was diagnosed last month with stage III Multiple Myeloma..IGa. I had 10 radiation treatments on my spine that were painful..especially getting off the table after the treatment! But a week later, I do have less back pain. This week, I started chemo..Revlimid for 3 weeks on 1 week off and Velcade twice a week by injection. The Velcade is 2 weeks on 1 week off, and so far only scheduled for 8 treatments. My doctor says injections will be less likely to cause neuropathy than giving it by IV. I was also given an injection that is supposed to strengthen my bones. I was also given steroid pills to take to help with side effects of Velcade. So far, the only side effect has been a red spot at the Velcade injection site, and I was told that a skin rash is one of the likely side effects.
I am fortunate to have a very supportive family to help me through, but it is still a scary time. I have spent hours on the American Cancer Society website researching meds, side effects, etc.
Probably the scariest part for me is the transplant once I get in remission. There are so many possible complications and no certainties. I am supposed to be contacted by Moffitt Cancer Center in Tampa, where my doctor is arranging for the transplant when the time is right.
If anyone has gone through transplant and can give me insite into what to expect, I wuld love the encuragement to get through it when the time comes. i would also like to ear about any clinical trials that have had positive results. There seems to be a lot of research into this cancer right now, and I certainly hope for a better prognosis for all of us than the 2-3 years that the data shows!
Meanwhile - prayers for all who are fighting this battle with me.
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