Cancer Survivors Network - Anyone With Velcade (bortezomib) Experience - Comments

Thanks for your comments. I

youngMM — Tue, 20 Sep 2011 23:12:27 -0400

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.

Transplant or not to transplant

karebare — Wed, 07 Sep 2011 08:42:50 -0400

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!!

MM and Young and Female

YoungFloridaMM — Wed, 20 Jul 2011 00:58:55 -0400

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.

I am a 46 year old female,

youngMM — Tue, 10 May 2011 12:17:45 -0400

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 think that 80% in 10 years

Rory1987 — Thu, 24 Mar 2011 09:04:35 -0400

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.

N/A

xRoryCorex — Thu, 24 Mar 2011 06:13:25 -0400

This comment has been removed by the Moderator

Same with me

MrBobC — Fri, 03 Dec 2010 06:18:13 -0500

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!

velcade

philmorg — Thu, 02 Dec 2010 23:16:01 -0500

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 the killer

imran — Thu, 21 Oct 2010 00:20:05 -0400

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.

very much like you

fishersofmen — Fri, 23 Apr 2010 00:32:01 -0400

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.

your opinion

meloasia — Wed, 31 Mar 2010 00:14:51 -0400

WIthous a doubt, Rev. It cost a lot more money and has the lease side effects.

pain in feet and hands , side effect of Velcade

meloasia — Wed, 31 Mar 2010 00:13:52 -0400

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.

pain in hands and feet - please help me

pspin0401 — Tue, 09 Feb 2010 05:44:31 -0500

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.

RE: hands and feet

JesCheckn — Wed, 04 Nov 2009 14:53:09 -0500

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!

N/A

username32 — Sat, 10 Oct 2009 08:39:20 -0400

This comment has been removed by the Moderator

Anyone With Velcade (bortezomib) Experience

hyeager — Sat, 25 Sep 2004 12:22:40 -0400

I'm 41 and just diagnosed in stage III with Multiple Myeloma. My doctor is starting me in a clinical trial with Velcade next week. I'll be going twice a week for IV treatment, two weeks on and one week off for 12 weeks. Has anyone had any experience with this treatment which they could share? What dosage level did you take? Thank you for your insight!