[gmarv]

Re: Revlimid, Velcade, and dex for newly diagnosed myeloma?

by gmarv on Thu Jul 16, 2015 3:28 pm

One other thing to think about with RVD is the strength that these drugs will be given to your father.

I started out at 20 mg of Revlimid and 20 mg of dex. Some patients start at a higher strength. My treatment was later reduced to 10 mg Revlimid 4 days a week and 8 mg of dex. The Velcade stayed the same. I have since stopped all treatment and have been drug free for 10 months so far. I also did not have an ASCT. It may be in my future, but who knows?

Good luck to you and your father.

[daisychain]

Re: Revlimid, Velcade, and dex for newly diagnosed myeloma?

by daisychain on Thu Jul 16, 2015 5:27 pm

Thank you, mrozdav and gmarv. You have given me lots to think about and some more questions to ask. Your input is very much appreciated.

Though it is still quite daunting to think that my Dad will soon be undergoing treatment such as this one, I feel a lot more informed from the accounts given to me by everyone on this forum of their experiences of these drugs. It means a lot at this difficult time to know that others have had good results from this combination of drugs.

I wish all of you the very best of luck for your futures. x

[Jonah]

Re: Revlimid, Velcade, and dex for newly diagnosed myeloma?

by Jonah on Thu Jul 16, 2015 6:34 pm

You've gotten a lot of useful feedback already. I just wanted to add that, if you're looking for a detailed account of what it's like to be treated with Revlimid, Velcade, and dexamethasone, you probably won't find anything better than what K_Shash has written up here in this thread in the forum:

"K_Shash's RVD induction therapy experience"

He started posting about his experiences with the treatment even before the treatment started, and then posted regularly throughout the treatment. I suspect you'll find the postings very helpful.

Also, in case you're interested, I think this is a description of the trial that's been offered to your father:

https://clinicaltrials.gov/ct2/show/NCT02219178

You can find a list of open clinical trials for myeloma patients in Ireland at this link:

https://clinicaltrials.gov/ct2/results?recr=Open&cond=myeloma&cntry1=EU%3AIE

Many here in the forum will probably find it interesting that one of the open trials for newly diagnosed myeloma patients in Ireland is testing Revlimid and dexamethasone combined with daratumumab versus Revlimid and dexamethasone alone.

[mikeb]

Re: Revlimid, Velcade, and dex for newly diagnosed myeloma?

by mikeb on Fri Jul 17, 2015 12:10 am

Hi Daisychain,

I'm sorry to hear about your father being diagnosed with multiple myeloma. He is lucky to have you helping him get information that can help him partner with his doctor(s) to make the best treatment choices. There is so much to learn about multiple myeloma, as the other folks on this thread have said. It's a complex disease. You've already gotten a lot of good information from the previous responders on this thread.

I thought I'd chime in here since I am in a clinical trial here in the US, and my treatment has included RVD. My clinical trial is testing whether patients can achieve as good results using RVD + Revlimid maintenance compared to RVD + autologous stem cell transplant (SCT) + Revlimid maintenance. A stem cell transplant has been part of the "standard of care" for the past decade or more for patients who can tolerate it, but since RVD (and other novel/targeted therapies) work so well, the trial is looking to see if the SCT is necessary.

No results have been published yet for the trial, so I don't have an answer yet. But I can tell you how things have gone for me, as one data point. BTW, before I forget, I was 59 in 2013 when I was diagnosed with multiple myeloma and started in the trial. I was randomized into the arm of the trial that included the SCT. I am now in the Revlimid maintenance phase of treatment.

In a nutshell, my response to the treatment has been as good as you can possibly get. I won't bore you with the technical details now, but I've been very fortunate - this treatment regimen has worked very well against my myeloma.

While mrozdav is right that Revlimid, Velcade, and dex are not considered chemo drugs by some technical definitions of "chemo" (because they are not alkylating agents), most myeloma doctors and patients still speak of them as "chemo," and they each have potential side effects that can range from annoying to very serious.

So for full disclosure I figured I should mention some of the side effects I've had. The most serious one is peripheral neuropathy, or numbness and tingling in my fingers and toes and feet. This is a fairly common side effect of Velcade. I also have GI issues. During some phases of the treatment I was constipated, but now it is mostly diarrhea, which is common with Revlimid. I also have low platelet and white blood cell counts due to the Revlimid. When I was on dex, I had insomnia and was extra amped up. These are common side effects of dex. There have been other things too, but they were more minor or short-lived. For the most part, these side effects have only been annoyances for me. Again, I'm very fortunate in this regard.

Best wishes to you and your father. Please keep us posted on what he decides regarding his treatment, and how things go for him.

Mike

[NStewart]

Re: Revlimid, Velcade, and dex for newly diagnosed myeloma?

by NStewart on Fri Jul 17, 2015 5:37 pm

Daisychain-
Lots of information for you to digest, but in the end it will be very useful for your father. I don't know very much about the insurance situation in Ireland, but if your father would have to pay a lot for Revlimid, the clinical trial should pay for this as well as the Velcade and Dex. Revlimid in the US can be as much as $10,000US a month. Fortunately most of us have insurance or grants that pay most of that cost.

RVD is a standard induction treatment, as is CyBordD (CVD, VCD), in the US. I had Revlimid and Dex as induction therapy and am on it again now since I have relapsed and have good responses both times. Velcade and Dex (VD) is another standard induction therapy here. I would bet that Thalidomide is used as a beginning therapy in Ireland. One of the major drawbacks with Thalidomide is the fact that it frequently causes peripheral neuropathy that isn't reversible with stopping Thalidomide. Velcade, if infused, also is notorious for causing peripheral neuropathy, but is often reversed when Velcade treatment is stopped. Revlimid can cause blood clots, so an anticoagulant such as aspirin should be taken with it. Most of the side effects that you read about for the drugs rarely happen, but they are possible. I've had minimal side effects with Revlimid, fatigue and GI problems that are minimal. With Dex I have one night of poor sleep, sweating and an effect to my voice quality for a couple of days following taking it.

A benefit of being on a clinical trial is that your father will be followed more frequently and anything negative that could happen would be noticed quickly. Also, he would be getting a treatment that has been proven to be very effective in treating myeloma.

Let us know how your father's appointment with the doctor goes next week and what treatment option is agreed upon.

Nancy in Phila

[mrozdav]

Re: Revlimid, Velcade, and dex for newly diagnosed myeloma?

by mrozdav on Fri Jul 17, 2015 6:49 pm

Daisychain,

I like everything that Mike and Nancy have written to you. If your father does participate in the RVD trial, he should also discuss with his doctor the need for taking acyclovir in addition to aspirin. As Nancy indicated, the aspirin is to prevent blood clots (I take 81 mg daily) from the Revlimid. The acyclovir is to prevent shingles which is sometimes associated with Velcade.

[daisychain]

Re: Revlimid, Velcade, and dex for newly diagnosed myeloma?

by daisychain on Tue Jul 21, 2015 7:46 am

Hello all,

I just want to update you on our meeting with my Dad's doctors. Firstly, thank you all for your advice and insight into what questions I needed to ask them and what information we really need to know. I felt a lot more prepared having read all of your responses before speaking with his consultant about his treatment choices.

Let me begin by saying that my Dad has decided to take part in the clinical trial. The two options that are available to him are CyBorD [cyclophosphamide, Velcade, dexamethasone] and the clinical trial using RVD. His doctor explained that, though the first option is good, he feels that the medication offered in the clinical trial is better and he recommends RVD as the best treatment for my Dad.

He explained that while multiple myeloma was considered absolutely incurable when he was studying a number of years ago, there have been great advances in treatment in the past few years and that may people live for long periods of time in remission. Because the only symptoms that my Dad has are the small lesions (following the elimination of the large tumour on his spine), it seems that his disease is in the early stages so his consultant feels confident that he can hopefully get it under control. It was a great relief to hear him say that, although we are very aware, as he also stated, that there are no guarantees that this will be the case.

He has said that following a 12-week treatment with RVD, my Dad will have a stem cell transplant, as patients who have stem cell transplants too, generally do better. Some aspects of this procedure were explained to us and it seems quite severe, we've been told that he would have to spend a month in hospital and will be very ill during this process. How many of you have had this drug combination without a stem call transplant and how are you doing now?

Mrozdav, you said that you have opted out of a stem cell transplant. Is this by personal choice or has your doctor advised that it is not necessary and that you will do just as well without it?
Mikeb, I know you are taking part in a trial that is examining this, do you know if there is any existing evidence to suggest that RVD is enough on its own?
gmarv, you seem to be doing well without a stem cell transplant. Again, was this a decision made by you or your doctor?

His consultant is very knowledgeable in the area of multiple myeloma so I trust that he is making the best possible treatment choices for my Dad. If it means that he will be in remission afterwards, I know it will be worth it but I just don't like to think of him having to go through such a severe treatment as a stem cell transplant.

Nancy, as you pointed out, one of the big advantages of the trial that was highlighted to us is the fact that he will be so closely monitored if he does take part in the trial.
mrozdav, he will also be given aspirin and an antibiotic to prevent shingles and infections.
Jonah, thank you so much for the link to the blog written by K_Shash. It provides an invaluable insight into this drug regimen and I have shown it to my Dad. Although we know that everybody reacts differently to drugs, it has reassured us to know that this combination of drugs can be taken with tolerable side effects.

Following the stem cell transplant, he will then be on maintenance therapy indefinitely.

Thank you once again to all of you for your input in helping to guide us toward an appropriate treatment choice for my Dad. If it were not for this forum, and its accounts from people like yourselves, who are living with multiple myeloma and have had similar experiences and similar choices to make, I really don't know who I would turn to for help with this.

It will be a number of weeks before my Dad will start this treatment. Please God he will have a good response and, as his consultant suggested could be the case, he will be heading towards remission very soon.

God bless you all and I wish you all good health and the very best of luck,

Daisychain

[mrozdav]

Re: Revlimid, Velcade, and dex for newly diagnosed myeloma?

by mrozdav on Tue Jul 21, 2015 10:19 am

Daisychain,

It looks as if things are falling into place for you and your father and that you can move forward with confidence. Your sentiments about this forum are shared by many. For me it has been an invaluable source of information, not to mention psychological comfort.

You ask whether the decision to opt out of a stem cell transplant was my own or my specialist's. In truth, after my specialist told me that the decision was entirely up to me, I decided to seek a second opinion at the Mayo Clinic in Rochester, Minnesota, one of our important myeloma centers. This kind of a monumental decision could not be left to me alone; I needed help. Once I got there, however, I was quickly given to understand that the standard Mayo protocol is four months of induction with CyBorD or RVD followed by a stem cell transplant. There was really no room for discussion about this. The consulting specialist made it clear that there was controversy about the need for transplants, but that at the current time Mayo's position was that they were necessary.

I returned home having decided to have the SCT as soon as possible and so advised my specialist. I subsequently went through almost fifty different tests to ensure that I was in a healthy enough condition to proceed. Everything went swimmingly. Then, at my final consultation just a few days before actually starting the stem cell collection process, my specialist told me that in her opinion I did not need to have a transplant, that the novel drugs now available would be just as efficacious. I was stunned. Still, because of the respect that I have for her, and because I was aware that there is considerable controversy among specialists anyway (but it is decidedly the minority view that transplants are not necessary), I decided to cancel the scheduled procedure (with my specialist's blessing).

Only time will tell whether I made the correct decision. I have had many misgivings about the decision, but at this point feel somewhat reconciled. So far, things are going well. My quality of life is good. Should things change, I may yet have a stem cell transplant although I truly hope that that will not be necessary.

From what you have written, it sounds as if you are in good hands. This is so, so important. Best of luck!

[KLR]

Re: Revlimid, Velcade, and dex for newly diagnosed myeloma?

by KLR on Tue Jul 21, 2015 1:11 pm

Daisychain,

My husband, diagnosed at stage II, had 6 cycles of RVD and had a complete response. He felt pretty good on RVD and continued all his usual activities, including working full time. The dex made him hyper, he had issues with getting enough quality sleep, and it made his eyes and face quite puffy. The Velcade caused some numbness and tingling in his feet, which is permanent. He had his stem cells collected the end of April.

My husband was dead set against transplant up until the last minute. He was dreading the side effects of the high-dose chemo and being out of work. The doctor suggested he go this route but would not give us his opinion; our choice, alone. There is no guarantee that it will give anyone a long lasting remission. My husband wanted to collect cells and put it off until relapse. He has one chromosomal abnormality, t(4:14), and we could find no abstract or article in favor of postponement. So, with 3 weeks preparation, he went ahead with the transplant. He was in the hospital for 17 days. Most of the time he felt good enough to eat well, visit and take walks out in the hallway. His nausea was controlled with medication, and he had diarrhea on and off for about 6 days. By the time we got home he was done with all that and didn't need any medication to control either of those side effects.

The extreme fatigue he experienced was the biggest side effect. It was overwhelming. I would say, all combined, he lost one month of the quality of his life with the transplant. Two weeks after he got home, his energy started to come back. Walking every day and increasing the pace and distance was vital. Because he had no digestive symptoms at home, he was able to eat everything, which I'm sure helped his energy level return, as well. He lost a total of 10 lbs and has put back on about half of that. He has been enjoying his recovery as it is summer here. He has not missed working. He swims in the pool, walks, does a routine of push ups and sit ups and light free weights, BBQs, visits with family and friends, and only has to avoid crowds and lawn work at this point. He has been off RVD and chemo while he recovers, so in one way, the transplant was good in that he has gotten some quality time without the chemo for about 6 weeks now. He looks great and his hair is growing back and looks like he got a buzz cut for the hot weather! It has been a much better experience than we thought it would be. Now we hope and pray it gives him a lasting remission. We meet with his specialist this week regarding maintenance.

My heart goes out to you and your Dad. It's hard. It's all consuming. Please contact me if you'd like more details than what we can go into here - about anything.

[mrozdav]

Re: Revlimid, Velcade, and dex for newly diagnosed myeloma?

by mrozdav on Tue Jul 21, 2015 2:32 pm

KLR,

This is wonderful. Such a good story. Please continue writing in to update your husband's progress.