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Anyone With Velcade (bortezomib) Experience

hyeager
Posts: 1
Joined: Sep 2004

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!

sylbates
Posts: 8
Joined: Mar 2004

My dad, 74, was diagnosed at 73 and is on Velcade. He will be going on his 2nd month. So far, there doesn't seem to be any sign of progress other than weakness from the drug. After 2 more cycles, and still showing no sign of progress, the doctor will discontinue Velcade. I've suggest going back to Vinchristin, my dad has received 2 cycles of that, and showed significant result. Went from 7800 abnormal protein level down to 800 within 5 months.

sylbates
Posts: 8
Joined: Mar 2004

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!

Luuka
Posts: 8
Joined: Feb 2009

Know how you feel....hope the doctors find something to help him!!! FAST!!

imran
Posts: 1
Joined: Oct 2010

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.

katclaws
Posts: 2
Joined: Oct 2004

hyeager, I wish you the very best of luck with the Valcade. My 82 yr old father may be starting on it on Oct 25th and I have been trying to find out more about it too.

sykbatesm I'm so sorry that your Dad is not respoding to the Valcade.

I will be keeping you both in my prayers.

I hope someone else will post about their experience with Valcade as well

JohnMike
Posts: 1
Joined: Mar 2005

My mother was diagnosed at 71 with MM. For six and a half years, she was on Alkeran four days of the month, with Prednisone. She was doing very well, but last December, her oncologist tried Thalidomide (1000 dollars a prescription) Her doctor gave her a 28 day supply. She did not respond to it, so he put her on Valcade. She now goes for twice a week for IV Valcade. Doctor says that she is responding (she is now 78), but there are side effects: fatigue, mild nausea, constipation and extreme pain in her fingertips. I am not sure of the dose she is taking, but her doctor assures her that she is doing well. I'm not so sure.

I will remeber all of you in prayer. Will check back here to see if there is any response.

GregK
Posts: 3
Joined: May 2005

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".

GregK
Posts: 3
Joined: May 2005

I made a mistake in my message. Just to clarify... The stem cell transplant brought me down to 5-10% involvement of MM cancer cells in bone marrow biopsy. Velcade took me from 40-45% to 10-15%. Again, if anyone wants to discuss my experiences with Velcade, please send me an email. I'd also be glad to share experiences with VAD or Stem Cell Transplant. If someone wants to talk on the phone, we can arrange that.
GregK

paterson1010
Posts: 1
Joined: May 2005

Hi Greg,
I am 64 and was diagnosed with MM almost a year ago. I was on a 4 month regimen of Dex and Thalidomide through January. However at the end of the treatment (last week) I had emergency surgery for a ruptured diverticulitum. A second operation later I now have to decide on my next treatment -- either Chemo followed by bone marrow transplant or VAD. I just heard about VAD 2 days ago from a second opinion doctor so I'm in a quandry as to what to do. I am in stage 2 and had a reduction of MM cells by 50% from the first treatment to 20%. But that was as of March and I'm sure it's increasing again. So that's my situation. You seem very knowledgeable so I'd appreciate any reponse. By the way, this is the first chat room discussion group I've ever participated in so I hope I'm following the right protocol.

Sheila P

Luuka
Posts: 8
Joined: Feb 2009

Like to hear your experience with the stem cell? What about Velcade? Did you have problems with that one?

robhendr
Posts: 2
Joined: Jan 2009

Hi, I took thalidimaide as part of my initial second half chemo regimine. I only went through one cycle (2 weeks) before DR and I decided that the neuropothy was getting much worse. SO my experience was that it did have a rapid and significant effect on my neuropathy. I went through additional chem and completed my Stem Cell Transplant on Oct30, 2009. They decided I should be on revlimid as a maintenace therapy. Revlimid is a purified form of thalidomide. Even though I was taking a very low dosage I have had an increase in the neuropathy again. So, once again we have discontinued it. My hands have gotten better within 3 weeks, but feet and lower legs are still a mess impacting my ability to walk and balance. BUT, multipl Myeloma is such an "individualized" cancer and so are the treatments. What negatively impacted me may just be the thing for you. I would just suggest that you heighten your awareness and really be in tune with your body...if you notice an increase or the start of undesireable side effects you have to tell your doctor and weigh risk/reward and your desire for quality of life.

Luuka
Posts: 8
Joined: Feb 2009

Yes, know what you went through. Hubby is suffering dearly with hands and feet. What did you take for relief? Doc gave him some Neurontin and he is having tough time getting used to it. Did you ever take that? Bet we have to change the Thal too!

mommynus
Posts: 1
Joined: Mar 2009

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.

JesCheckn
Posts: 2
Joined: Jul 2009

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!

fishersofmen
Posts: 1
Joined: Apr 2010

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.

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

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.

youngMM
Posts: 3
Joined: May 2011

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!!!

YoungFloridaMM
Posts: 1
Joined: Jul 2011

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.

karebare
Posts: 3
Joined: Sep 2011

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!!

youngMM
Posts: 3
Joined: May 2011

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.

pspin0401
Posts: 1
Joined: Feb 2010

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.

meloasia
Posts: 11
Joined: Mar 2010

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.

Luuka
Posts: 8
Joined: Feb 2009

Do you think Thal is better than Rev?

meloasia
Posts: 11
Joined: Mar 2010

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

Luuka
Posts: 8
Joined: Feb 2009

Hello there, hope the numbers improve. How did you ever get used to taking Neurontin and how long did it take? Hubby having a rough time with it. We just came off Velcade......now starting Thal. Are you taking blood thinner with it?

MySoulmate
Posts: 1
Joined: Oct 2004

Hi my wife is 47 and was recently diagnosed w/StageIII MM and she is on Thalomid/Dexamethasone. She is responding well so far. But I know that there is a MATRIX out on the latest Clinical Trials by the IMF. There are many combinations being tested...ei. Vel/alone...Vel/Thalomid...Vel/Melphalin...etc. you must have heard about them. So there is a lot going on and good luck. Wish I could be of more help.

Luuka
Posts: 8
Joined: Feb 2009

Hello, hubby starting the Thal with Dex today. What side effects did your wife have? You said it works? Can you give me some more info...appreciate it very much. We've taken Revlimid and Velcade.

katclaws
Posts: 2
Joined: Oct 2004

Hello again hyeager, I was wondering how you were doing on the Velcade? My Dad will be starting it on Friday, Oct 29. They are hoping to add Thalidomide in conjunction with the Velcade, but he isn't covered by insurance or Medicare. I am trying to get help through Celgene the company that make Thalidomide and we are also trying the VA. Unfortunately, that may take up to two months-which I wish he had the luxury of. I've been having a hard time finding any personal experience stories from patients. I hope it will work out well for you and get you into remission asap. Keeping you in good thoughts & prayers. Please let us know how you are doing with the Velcade if you feel up to it and have the time. And thank you to mysoulmate for your reply. please keep us posted on your dear wife. It would be greatly appreciated.

Luuka
Posts: 8
Joined: Feb 2009

Hello, sorry to hear about the medicare and insurance problem. Have you tried getting into a study at a larger hospital? There at lots of them out there. What Cancer Center is considered the best? I have heard Mayo and Boston are top of the line.

Luuka
Posts: 8
Joined: Feb 2009

Hello, my hubby just came off Velcade last week. Doc decided the previous treatment (Revlimid) was working better so, we are starting Thalidomide today. Revlimid was working, but he had some side effects and had to come off that one. Thal is same family, but this time we are on Coumadin to prevent blood clots.

philmorg
Posts: 1
Joined: Dec 2010

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.

MrBobC's picture
MrBobC
Posts: 17
Joined: Oct 2010

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!

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