I will be starting subcutaneous Velcade treatments next Monday. They will be on days 1, 4, 8 and 11, with 10 days of, and I am still taking 40 mg of dexamethasone once per week. I had to stop Revlimid due to a rash and severe swelling of my legs, ankles and feet. The rash is now gone, and swelling is at my feet only and that is starting to subside also.
So much to take in right now with starting a new drug. I just wanted to know if anyone has gone from Revlimid to Velcade. The Revlimid was convenient because it was an oral drug. It was working so well since my diagnosis with a very good response. I made plans to harvest my stem cells and wait to do the transplant for a while. Now the plans have changed. I will still do a harvest as soon as I can and move up the transplant time frame.
I was hoping that my oncologist would have just reduced the Revlimid dosage before changing to Velcade. He spoke with my future transplant doctor who also said to stop Revlimid, but not to discard it totally, as she wants to use it for low-dose maintenance after the transplant.
On a positive note, each Velcade injection is covered by my Aflac cancer policy. Money isn't everything, but it helps.
So if anyone could fill me in on changing from Revlimid to Velcade, that would be helpful. It also seems like I will have 10 days off between cycles (unlike 7 with Revlimid).
Thank You,
Castaway
Forums
-
Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Switching from Revlimid to Velcade - any advice?
I took Velcade for almost two years with really good sucess until I started becoming immune to it. Took all my numbers down from very high at diagnosis. Took them over 3 years to find out what the hell I had, with every specialist in the J. Muir Hospital System. Anyway, Velcade is great stuff, with diarrhea the main side effect, which is manageable with Immodium, the safest one out there.
Then my hematologist put me on Revlimid, 25 mg to start. Couldn't take that dosage, reduced it to 15 mg for 21 days, then my old 10 days off. It slowly started bringing my numbers down, but ankles and calves started swelling right away and I had shortness of breath. Went to Urgent Care about 2 months ago with left ankle, where I already have bad valves from knee down and wear support stockings for it. The doctor looked at it, twisted, and said no blood clots.
Well, during my 10 days off along with my dex (20 mg twice a week ), the ankle and calf would get better until last week. Calve hurt so bad I could not stand on it. Called my doctor and went to ER and got an ultra sound. Had blood clots, one in outer calf vein and one dvt behind the knee. Gave me an Xarelto (rivaroxaban) (15 mg and wrote a prescription for more and sent me home.
My wind got so bad I could not go up and down my stairs without being out of breath. Not normal for me. I am very active, play golf, etc. Went to see my doctor and sent me to get a CAT scan of my lungs. Had blood clots. Been a week and it's getting better, especially my lungs and ankle swelling, but they still have me on Revlimid.
In my opinion, this should be taken off the market completely. It is an old polished version of the same drug that caused women to have all kinds of birth defects a long time ago and is a very harsh chemo drug that affects many things in your body. Gave me clots which I have never had. On my 6th cycle now and plan on going back on Velcade asap.
The FDA just approved that Velcade will work again as long as you have been off it for 6 months. Revlimid is bad stuff and should be abandoned. Celgene is controlling the cost, who gives it, etc. They are crooked as hell.
So I say go to Velcade. It is one of the best and is a target chemo that does not affect all your organs, etc., like Revlimid does. I would take Velcade 100 to one over Revlimid. Just my experience with it. Now I have 6 months of taking Xarelto, which is one of the newest blood thinners with some very serious side effects. It is also irreversible and if you get a big cut, you can bleed out. Seems nothing is safe anymore.
In my opinion, the T-cell therapy being done by Novartis and Stanford and the Cleveland Clinic is the answer to a real cure for all cancers. They take your blood, treat it with the T-cells that seek out only the type of cancer you have, and kill it, no matter where they try and hide. No damage to anything else. They treated about 25 last stage patients with it who had leukemia and all are cured in a trial. This is the answer and not these poisons they are giving us now.
Hang in there. I am. Velcade is great stuff in the time being. Hope this helps.
Geo
Then my hematologist put me on Revlimid, 25 mg to start. Couldn't take that dosage, reduced it to 15 mg for 21 days, then my old 10 days off. It slowly started bringing my numbers down, but ankles and calves started swelling right away and I had shortness of breath. Went to Urgent Care about 2 months ago with left ankle, where I already have bad valves from knee down and wear support stockings for it. The doctor looked at it, twisted, and said no blood clots.
Well, during my 10 days off along with my dex (20 mg twice a week ), the ankle and calf would get better until last week. Calve hurt so bad I could not stand on it. Called my doctor and went to ER and got an ultra sound. Had blood clots, one in outer calf vein and one dvt behind the knee. Gave me an Xarelto (rivaroxaban) (15 mg and wrote a prescription for more and sent me home.
My wind got so bad I could not go up and down my stairs without being out of breath. Not normal for me. I am very active, play golf, etc. Went to see my doctor and sent me to get a CAT scan of my lungs. Had blood clots. Been a week and it's getting better, especially my lungs and ankle swelling, but they still have me on Revlimid.
In my opinion, this should be taken off the market completely. It is an old polished version of the same drug that caused women to have all kinds of birth defects a long time ago and is a very harsh chemo drug that affects many things in your body. Gave me clots which I have never had. On my 6th cycle now and plan on going back on Velcade asap.
The FDA just approved that Velcade will work again as long as you have been off it for 6 months. Revlimid is bad stuff and should be abandoned. Celgene is controlling the cost, who gives it, etc. They are crooked as hell.
So I say go to Velcade. It is one of the best and is a target chemo that does not affect all your organs, etc., like Revlimid does. I would take Velcade 100 to one over Revlimid. Just my experience with it. Now I have 6 months of taking Xarelto, which is one of the newest blood thinners with some very serious side effects. It is also irreversible and if you get a big cut, you can bleed out. Seems nothing is safe anymore.
In my opinion, the T-cell therapy being done by Novartis and Stanford and the Cleveland Clinic is the answer to a real cure for all cancers. They take your blood, treat it with the T-cells that seek out only the type of cancer you have, and kill it, no matter where they try and hide. No damage to anything else. They treated about 25 last stage patients with it who had leukemia and all are cured in a trial. This is the answer and not these poisons they are giving us now.
Hang in there. I am. Velcade is great stuff in the time being. Hope this helps.
Geo
Re: Switching from Revlimid to Velcade - any advice?
I started with 25 mg of Revlimid and 20 mg of dexamethasone. My numbers came down slowly and then started to go up again, and it caused pretty low red and white cells.
My doctor reduced dosage to 10 mg and started me on once a week subcutaneous Velcade for 3 weeks and one week off. My free light chain numbers plummeted from 3500 to 148 after only 5 shots. I've just finished my 4th cycle and the lambda FLC number was down to 57 at last blood test.
I am not having any bad side effects. At first I had a little diarrhea. Now I'm having more of a problem with constipation, which I think I can solve if I up my green veggies.
We're going to see where the numbers are in November (hopefully normal), and then see if a stem cell transplant is necessary or continue the current drug regimen.
I hope Velcade will be effective for you and that you will tolerate it well. I am feeling very well lately – practically normal.
My doctor reduced dosage to 10 mg and started me on once a week subcutaneous Velcade for 3 weeks and one week off. My free light chain numbers plummeted from 3500 to 148 after only 5 shots. I've just finished my 4th cycle and the lambda FLC number was down to 57 at last blood test.
I am not having any bad side effects. At first I had a little diarrhea. Now I'm having more of a problem with constipation, which I think I can solve if I up my green veggies.
We're going to see where the numbers are in November (hopefully normal), and then see if a stem cell transplant is necessary or continue the current drug regimen.
I hope Velcade will be effective for you and that you will tolerate it well. I am feeling very well lately – practically normal.
-
PeggyB - Name: Peggy B
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 60
Re: Switching from Revlimid to Velcade - any advice?
I would like to say to anyone worried about taking Revlimid that I have been taking it for nearly 5 years, 7.5 mg, on the usual 3 weeks on and 1 week off regimen. No problems to speak of, only unpredictable diarrhea and slight neuropathy.
Until I reached a plateau a few months ago, my m-protein values went down every month over the years. I am truly grateful for it.
Annette
Until I reached a plateau a few months ago, my m-protein values went down every month over the years. I am truly grateful for it.
Annette
-
Annette
Re: Switching from Revlimid to Velcade - any advice?
I just want to thank everyone for there input. When I was first diagnosed, my IgA was 3619 and my total protein was 10.3. With two cycles of Revlimid / dex, my IgA dropped to 612, total protein to 6.2 with an m-spike of 1.48 g/dl (14.8 g/L).
My RBC, WBC and HGB have been a little low throughout my 7 months of treatment. My last labs show my IgA at 269, total protein at 5.3 and M-spike at 0.24 g/dL (2.4 g/L). Albumin, alpha 1 & 2, beta and gamma are all in the normal range.
I was thinking that my oncologist would have just lowered the dosage for a while but he had concerns about Stevens Johnson's syndrome with my last rash and swelling issues. I hope I will have positive results with the Velcade and dex.
Most posts for Velcade have some complaints of a small rash / itch at the injection site. After my last episode with a 50-60% body rash with Revlimid, a rash the size of a 50 cent piece would be manageable.
Given that you get 10 days between cycles using Velcade, how is that time off compared to the 7 days off with Revlimid? For me, having 7 days off from Revlimid was like a mini vacation. I still took the dex. During my week off, strangely enough, I don't have any issues with the dex. It just gets me a little wound up, but I use that energy for walking, exercising or working around the house.
Castaway
My RBC, WBC and HGB have been a little low throughout my 7 months of treatment. My last labs show my IgA at 269, total protein at 5.3 and M-spike at 0.24 g/dL (2.4 g/L). Albumin, alpha 1 & 2, beta and gamma are all in the normal range.
I was thinking that my oncologist would have just lowered the dosage for a while but he had concerns about Stevens Johnson's syndrome with my last rash and swelling issues. I hope I will have positive results with the Velcade and dex.
Most posts for Velcade have some complaints of a small rash / itch at the injection site. After my last episode with a 50-60% body rash with Revlimid, a rash the size of a 50 cent piece would be manageable.
Given that you get 10 days between cycles using Velcade, how is that time off compared to the 7 days off with Revlimid? For me, having 7 days off from Revlimid was like a mini vacation. I still took the dex. During my week off, strangely enough, I don't have any issues with the dex. It just gets me a little wound up, but I use that energy for walking, exercising or working around the house.
Castaway
-
Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Switching from Revlimid to Velcade - any advice?
I am confused by Geo.'71's statement “The FDA has approved the Velcade will work again as long as it has been off 6 months”. This is the first time I have heard this.
I heard a number of years ago at a patient symposium that, as a general guideline for how to treat relapse after any treatment, if remission had been achieved and it has been over 6 months since initial induction therapy, to try the induction therapy again.
In no way was there any assurance that Velcade would work again. Studies had just showed that it may and was worth trying before moving on to another therapy approach.
As written this suggest that going on and off Velcade for six months will always reset the effectiveness of the drug indefinitely and I believe that is not the case. If it were the cae, that would be big news in myeloma treatment.
I heard a number of years ago at a patient symposium that, as a general guideline for how to treat relapse after any treatment, if remission had been achieved and it has been over 6 months since initial induction therapy, to try the induction therapy again.
In no way was there any assurance that Velcade would work again. Studies had just showed that it may and was worth trying before moving on to another therapy approach.
As written this suggest that going on and off Velcade for six months will always reset the effectiveness of the drug indefinitely and I believe that is not the case. If it were the cae, that would be big news in myeloma treatment.
-
Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Switching from Revlimid to Velcade - any advice?
Hi Eric,
We believe Geo.'71 is probably referring to the news discussed in this forum thread:
"FDA approves Velcade for retreatment of myeloma," Beacon forum discussion started August 8, 2014.
We shared some of our thoughts about the news in that thread.
We believe Geo.'71 is probably referring to the news discussed in this forum thread:
"FDA approves Velcade for retreatment of myeloma," Beacon forum discussion started August 8, 2014.
We shared some of our thoughts about the news in that thread.
Re: Switching from Revlimid to Velcade - any advice?
I was on Velcade during my induction therapy. I initially had diarrhea, but when they switched from IV to subcutaneous injection, that disappeared.
Then, after my SCT, I was on Revlimid for maintenance chemo, but it suppressed my white blood count too much, so I was switched to Velcade, one shot every two weeks. I have had absolutely no side effects and much prefer it to Revlimid. One shot every two weeks gives me 13 days of 14 without any medication, which is great.
And I am still in remission
Then, after my SCT, I was on Revlimid for maintenance chemo, but it suppressed my white blood count too much, so I was switched to Velcade, one shot every two weeks. I have had absolutely no side effects and much prefer it to Revlimid. One shot every two weeks gives me 13 days of 14 without any medication, which is great.
And I am still in remission
-
Ginny - Name: Ginny
- Who do you know with myeloma?: self and four friends
- When were you/they diagnosed?: October, 2012
- Age at diagnosis: 62
Re: Switching from Revlimid to Velcade - any advice?
I used Velcade for about 4 months as my initial induction therapy. It was administered IV at the time, since injection was not FDA approved then. It worked really well against my myeloma, bringing me to a very good partial remission.
However I think it is a bit misleading to say it does not affect other organs and only targets myeloma cells. It is my understanding that proteasome inhibitors do affect all cells but, like many chemotherapy treatments, they affect the target cancer cells much more. In my experience with Velcade, I got severe peripheral neuropathy that did subside after I had to stop Velcade. I had to stop Velcade because I developed a really bad case of orthostatic blood pressure from the nerve damage that resulted in me being admitted to the hospital for a week. To this day, I still have some residual neuropathy that has not gone away.
Also I found the fatigue to be really bad from Velcade. I also lost my appetite and about 55 lbs (25 kg) by the time I went to SCT. Food lost almost all it taste and, if I tried to force myself to eat, I would often throw up. I could go for days without feeling hungry at all. Strangely, my sense of smell remained intact. Food smelled good, just had no taste.
Having said all this, I can say that I would do it again. I probably would not be here today if it were not for Velcade, or at least likely be on dialysis from complete kidney failure. I was on the verge of complete kidney failure just after diagnosis and, if it were not for the swift and effective treatment of Velcade, my kidneys probably would not have been saved. From reading other people's experiences with Velcade, the side effects hit me more than most, so my case was a bit atypical.
Right now I am on 25 mg Revlimid and dexamethasone and have been on 10 mg Revlimid for 2.5 years. Only been on for two weeks so far, but I can certainly tell the difference.
However I think it is a bit misleading to say it does not affect other organs and only targets myeloma cells. It is my understanding that proteasome inhibitors do affect all cells but, like many chemotherapy treatments, they affect the target cancer cells much more. In my experience with Velcade, I got severe peripheral neuropathy that did subside after I had to stop Velcade. I had to stop Velcade because I developed a really bad case of orthostatic blood pressure from the nerve damage that resulted in me being admitted to the hospital for a week. To this day, I still have some residual neuropathy that has not gone away.
Also I found the fatigue to be really bad from Velcade. I also lost my appetite and about 55 lbs (25 kg) by the time I went to SCT. Food lost almost all it taste and, if I tried to force myself to eat, I would often throw up. I could go for days without feeling hungry at all. Strangely, my sense of smell remained intact. Food smelled good, just had no taste.
Having said all this, I can say that I would do it again. I probably would not be here today if it were not for Velcade, or at least likely be on dialysis from complete kidney failure. I was on the verge of complete kidney failure just after diagnosis and, if it were not for the swift and effective treatment of Velcade, my kidneys probably would not have been saved. From reading other people's experiences with Velcade, the side effects hit me more than most, so my case was a bit atypical.
Right now I am on 25 mg Revlimid and dexamethasone and have been on 10 mg Revlimid for 2.5 years. Only been on for two weeks so far, but I can certainly tell the difference.
-
Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Switching from Revlimid to Velcade - any advice?
I was on subcutaneous Velcade during my induction phase last summer.
The biggest problem that I had with it was that I developed styes in my eyes, which is a known side effect. I already had neuropathy, and this did aggravate that somewhat but it has since returned to its previous level of annoyance.
Other than that, I really had no huge issues with the Velcade. The dex, on the other hand....
The biggest problem that I had with it was that I developed styes in my eyes, which is a known side effect. I already had neuropathy, and this did aggravate that somewhat but it has since returned to its previous level of annoyance.
Other than that, I really had no huge issues with the Velcade. The dex, on the other hand....
-
Blackbird - Name: Rick Crow
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb, 2013
- Age at diagnosis: 53
13 posts
• Page 1 of 2 • 1, 2
Return to Treatments & Side Effects