I have WM and non Hodgkin’s. Unfortunately this drug hasn’t worked for me and the side effects have been horrendous. I’m sure for some people this medication works well for them but I wish I had never received it.
Third try at kicking this disease. First was a stem cell transplant that lasted almost 3 years. Round 2 was Oral chemo with Dexamethazone and Lenalidomide, good for another 3 years. The numbers started creeping back up and now were on to the Borteximib with Cyclophosphamide and Dexamethazone. Just finished cycle 5 of 8. 4 weeks of weekly injections and then 1 week off. The oral drugs don't take the week off. Fantastic results right out of the gate after 2 cycles I was in normal light chain range again. The injections are easy to handle, although the area is getting a little irritated in general. Now that being said, I'm a fairly substantial target at 240 lbs, so they jam a lot of that stuff into me every week. The biggest side effect I'm experiencing is a lack of energy. Also finding over the last week or two that I'm beginning to lose my breath more quickly. Might6 be a bug, but I'm going to talk to the oncologist about it next week. The energy drop has been a steady decline since treatment started and I used to recover within a few days of injection, but it is getting more prolonged and more severe also. I may have to take some time off work in the end, but I'm committed to killing as much of this crap as I can, so going to tough it out as long as possible. The drugs are doing their part now so I'm going to help it out with a good attitude and kick this disease in the ass!
Diagnosed, after the collapse of 2 vertebra L6 & L12 resulted in the lose of 3 in. of height, plus an estimated 75% kidney function loss, in March 2012 with Stage 3 MM. After three weeks of intensive chemo treatments (Velcade + steroids) in the hospital. During that time I lost 50 of my previous 170 lbs, I was released when the doctors finale realized the hospitalization was killing me faster then the MM could left untreated. After release I was put on a bi-weekly treatment regime of bortezomib and panobinostat until Oct. That's when it was determined I has recovered sufficiently to survive a Stem-cell reinfusion. Completed during x-mass week 2012 and followed since by bi-weekly chemo of Velcade injections. The list of side-effects ranging from extensive excessive to no bowel activity. Swelling of the feet and ankles plus a rash from waist down I would have swore was the result of being attached by Fire Ants. Seeking any form of relief that may help, I started using the oriental detox foot patches that seemed to change the course of the problem within a few weeks. Physiological or not ?? and I don't care, something worked to stop the terrible burning and itching that nearly drove me mad plus nearly destroying any hope of sleep, for months. Now, post resent biopsy (Feb. 2015), we have discovered the Velcade is losing effectiveness as the MM is on the rise again. New war plan is called for which I will summit with my doctors on this week. Keep the faith and remember my old fall back position, no one gets out alive. In the interim, every day's a good day and a new adventure.
I am a Waldenstrom's macroglobulemia patient. It appears that Velcade is the first chemo that has greatly reduced the IgM and serum viscosity numbers. However, I couldn't tolerate the usual dosage (twice a week)and eventually got it once every two weeks. But it still reduced numbers. However, it did give me neuropathy (in feet) and doctor has discontinued use for awhile. Feet are recovering (with Neuronton). Have to see if numbers remain reduced. It did work and I've had worse side effects from other chemo. This wasn't bad.
I ave taken velcade for 2 years since 2011. It has been very effective and I have had very little side effects. My numbers are very good since being on velcade. For me, the outcome over weighs the side effects. I am been fortunate and extremely bless to have little to no pain. I have never taken pain medications, not even a tylenol. Praise the Lord.
I am 72 years of age in treatment for Amyloidosis/Myeloma. No problematic systoms to report after months of use.
You have to be satisfied with being in remission, but the neuropathy in my feet really makes me question whether or not I should have gone the transplant route. I just found out the Velcade has damaged the nerves in my stomach where I can’t digest food correctly. Make sure you are up front and honest with you Doctor about the pain. DO NOT assume the pain is supposed to be that bad.
SIDE EFFECTS SUCH AS LEG PAIN OTHERWISE SEEMS TO BE WORKING VERY WELL
My 72 yo mom took this for a few months through IV while also getting dexamethazone. She didn't want stem cell. Ths brought her kidneys back and the light chain numbers down to the 40's but doc recommended diff treatment, said still too high. Did a trial at Stanford then on o revlimid. Numbers back up to 60's so considering adding velcade at lower dose and not IV. Neuropathy so bad with IV she couldn't walk and took over 6mos to get feeling in feet again.
I have loss muscle mass, and I have tingling in my feet.I also don't have very much energy.Walking can also be difficult.
patient became tachy and lethargic
Diagnosed with MM in January, and started on an aggressive treatment using Thalidamide(daily),changed to Revlamid(daily), Dexmathazone(weekly), and Velcade injections(twice a week). The combination worked very well, and now getting ready for a stem cell transplant, so I am only on a maintenance dose of Velcade once a week. Side effects have varied, but have been able to control some of them using other medications(most over the counter). The only side effect that has been bothersome has been the pain in my hands and feet, but over the last couple of weeks, using heat in the evening and a change in medications(the addition of a beta-blocker), the pain has lessened and has become livable.
legs and feet drive me crazy
Initially treated with radiation & steroids, been on Velcade for 7 months. Mild nausea initially, some constipation, worst side effect for me has been lethargy. My numbers are in normal ranges, being transplanted next month. Had no neuropathy, no hair loss, mild appetite suppression but no weight loss. Can "taste" smell of medication days after treatment... but I can tolerate that. Experiencing "dry" eyes, facial hair, and acne, but doctor says that they most likely from steroids. I am very pleased with my results & treatment.
mantle cell progressed rapidly worse after 3 months on velcade.
After being on Revlimid, it was determined that Velcade would do a better job in getting my numbers down to a proper level for a stem cell transplant (autologous). Within 2 cycles I was ready. I had the transplant and within 4 months I was classified as CR (complete response). It will be 2 years in May 2010 and my numbers are still good. The only side effect of the medication is peripheral neuropathy. Although pretty bothersome, it is better than the alternative. I am aware that there is no cure for MM but thankfully there are drugs out there to help us survive.
I have had MM for five years with no symptoms other than a bloodclot. Velcade has knocked my protein levels down to normal with 6 treatments.Excruciating neuopathy in legs discontinued treatment. I am taking Lyrica which knocked out the neuropathy completely.
I was scheduled to have eight rounds of four injections each. After only four rounds, I was in remission! However, I did develop neuropothy in my feet, experienced vomiting and diarrhea, chills and weakness. It was not easy, but I would do it again, as I have been in remission for six years.
62 year old male,drug worked well with the cancer, but pain & swelling in feet & legs put me somewhat disabled.
Personally this drug put me in a worse position with the most awful side effects. With hindsight wish I never agreed to take it. Looks like many of these side effects are permanent and my bloods are just as bad.