[RadiantTiger]

Re: Maintenance treatment post-transplant?

by RadiantTiger on Mon Jun 29, 2015 11:16 pm

Thanks everyone. Your feedback and links have been quite useful.

I will definitely hold off on deciding anything until I see what the status is post-transplant. My oncologists seem to in the 'continuous maintenance for life' camp, and they usually like to start it 3 months post-transplant. Three months doesn't seem like enough time to know the results of transplant or for recovery from transplant (?). Sorry, but 'continuous maintenance for life' just doesn't sound good to me!

My oncologist told me today that they don't generally test for 'MRD' status, since it doesn't change their treatment recommendations. I guess they recommend maintenance to everyone regardless of your status. But this article contradicts that:

"One of the things we’re looking at is minimal residual disease. Patients who could be shown by special tests to have no minimal residual disease at a deep molecular level, signifying deep remission, might not need maintenance therapy. I think incorporating such a test is the next major step."

So I'll be requesting the tests required re: my 'MRD' status, assuming that blood work does not definitively show I clearly have 'residual disease'. I see from this thread that the topic of MRD testing is also somewhat complicated.

"Minimal residual disease (MRD) testing - some questions" (started March 28, 2014)

Sigh. What a bloody complicated disease we have. Each question seems to lead to a more equally complicated question!

Good to hear that the side effects are greatly less on maintenance. I have a lot of concerns about the relentless GI issues from these drugs. My guts seriously need a break. Hope the break from Revlimid I will get in 2 weeks helps somewhat. Of course, from what I've been reading, even greater gut hell awaits me in transplant recovery. Guess I'll lose that 15 pounds I've been wanting to lose.

RT

[Karen]

Re: Maintenance treatment post-transplant?

by Karen on Tue Jun 30, 2015 1:35 pm

Hi,

Just wanted to quickly add my experience to your mix. I was diagnosed in late 2010 and had a SCT just about one year ago, on June 25, 2014. Like you, my main impetus for deciding on the transplant was a hope that I could do without as many drugs, particularly dexamethasone, which gave me all of the usual unpleasant side effects.

My doctors (both the transplant doctor and my regular hematology oncologist) recommended Velcade maintenance for me. In addition to telling me that studies showed a longer period of remission with Velcade maintenance, I think they also recommended Velcade over Revlimid because I'd already gotten quite a bit of Revlimid in my first round of treatment (RVD).

I'm currently in complete remission and am taking no other drugs relating to the myeloma except for Acyclovir. I'm experiencing a small amount of neuropathy in my toes but otherwise notice no side effects from the Velcade. I do feel a little tired for maybe one day after the shot, but it's not bad. I'm on a 4 weeks on / 2 weeks off schedule.

This past year (once I recovered from the transplant, which didn't take as long as I feared) has been great without being on steroids. For me, the trade-off for any potential side effects / long term complications from the Velcade are worth it. I am of course fortunate that my insurance will pay for it as it bills at about $2,000 per dose

Good luck with your transplant and your decision and I'm happy to answer any other questions you might have!

Karen

[antelope1225]

Re: Maintenance treatment post-transplant?

by antelope1225 on Tue Jun 30, 2015 3:36 pm

Once again, I really appreciate your links, Mark. Following your links I found articles about long-term survival being connected to immune function.

In reading PubMed and other articles, I have found mitochondrial health to be a key goal - whether avoiding toxins, getting better nutrition, lower stress, physical exercise - the common denominator is that those are all good for mitochondria.

Otto Warburg first discovered that cancer cells have a different form of metabolism than healthy cells, and Pedersen (with a high-powered microscope) noticed that cancer cells all had defective mitochondria (I am sure you know that mitochondria are the energy producers of cell).

Wish there were a way to find more of your comments. You always have such interesting links.

Cathy

[mikeb]

Re: Maintenance treatment post-transplant?

by mikeb on Fri Aug 14, 2015 10:53 pm

I'm following up on my posts from June regarding the decision I've been facing about whether to continue Revlimid maintenance following the conclusion of my 24 months of Revlimid maintenance, which would happen in October. When I last posted, I mentioned that my myeloma specialist had recommended that I continue Revlimid maintenance "until kingdom comes" when I saw him in June.

I think kingdom has come.

To make a very long story short, my doctors think Revlimid has caused my heartbeat to slow to dangerously low rates sometimes, and that has resulted in one fainting and several more near-fainting events for me over the past few months.

Against my wishes, I was put in the hospital for a few days at the beginning of this month after one near-fainting event. While in the hospital, I was told to stop taking Revlimid, which I did, and I have not had any more of the fainting events. However, it does seem like I have had some abnormally long lags between heart beats, just not as long as they were when I was on Revlimid.

I was wired up to a heart event monitor for about 4 weeks and a 24-hour holter monitor earlier this week. (So many wires all over me, I felt like a suicide bomber.) Today I met with an cardiac electrophysiologist, who I had been referred to. Based on the monitor data, it seems that I ac­tually have two cardiac irregularities. First is the slow heart rate (bradycardia), which my doctors suspect is caused by Revlimid. Second is an irregular heartbeat (atrial fibrillation,"a-fib"), where my heart rate can jump up to 140 beats per minute without any provocation on my part. And most of the time, I'm not even aware of this happening. The a-fib may be a condition I've had for years, even before getting multiple myeloma, and it was never picked up until now.

It looks like the first thing we'll try for the a-fib is a beta blocker and a blood thinner. But, for someone with multiple myeloma and a slow pulse, there are potential issues with both of those. If those drugs don't work and/or I can't tolerate them, it sounds like the next option may be ablation surgery to scar the areas in the heart where the out-of-whack a-fib electrical signals are sent and received. Either that or a pacemaker.

As for what to do about re-starting the Revlimid or trying some other myeloma treatment in the near term, I'll be having a BMB on August 26. We'll see what those results show and then make some decisions. My blood tests have generally been good each month, so I'm hopeful that the BMB will bring good news too.

Has anyone else experienced heart-related problems with Revlimid?

From what my doctors have said, it is an uncommon, but not unheard of side effect. I've tried to understand as much as I can about multiple myeloma during the past few years. Now it looks like there's a different medical area I better bone up on as well.

Many times, I have preached the importance of taking things one step at a time when it comes to dealing with multiple myeloma. But this twist in the road is a wake-up call to me, telling me that I wasn't taking my own advice when I started thinking about whether to continue the Revlimid indefinitely. First I should have made sure I was able to complete the 24 months of maintenance for the clinical trial I'm in. It looks like I'm going to end up a few months short of that.

I'll keep you posted as we go down this new path ...

Mike

[mrozdav]

Re: Maintenance treatment post-transplant?

by mrozdav on Sat Aug 15, 2015 10:03 am

Mikeb,

Sorry to hear about these new developments. I have been thinking for some time now that It would be prudent to get a check up at my cardiologist's. Your posting serves as the impetus for me to make the appointment sooner than I had planned.

I, too, have bradycardia, but I have had it for a long time, even before diagnosis. Mine must not be as severe as yours because I have not yet experienced any fainting episodes. The only time the issue of my low heart beat has arisen is during BMBs when I am being administered sedation. If you don't mind my asking, how low did your pulse go during the daytime and at night?

As for the a-fib, I assume that you were taking aspirin all along as a blood thinner. Do your doctors plan to add something new, such as Coumadin (warfarin)? Not that it means much for your par­tic­ular case, but my 93 year old father has had a-fib for many, many years. He only takes Coumadin and low dosage blood pressure meds. When his a-fib was initially diagnosed, his doctors told him that he probably had it for many years before.

Keep us posted.

[JPC]

Re: Maintenance treatment post-transplant?

by JPC on Sat Aug 15, 2015 8:17 pm

Good day, Mike.

First, thank you very much for the update. Your posts, I can say without fear of contradiction, are some of the most knowledgeable and constructive on this site.

I personally know several people with one of your two conditions, but no one with both. Like multiple myeloma, a-fib is very manageable in this day and age. Of course, it would be better not to have to deal with it at all. I do know from your posts how well you have managed your first issue, and I wish you all the best in dealing with the a-fib. I know folks who have had the surgery you described, and they are active and back to work fairly quickly. There are of course issues, but they can lead there life.

Best of luck to you.

[K_Shash]

Re: Maintenance treatment post-transplant?

by K_Shash on Sat Aug 15, 2015 9:28 pm

Hi MikeB,

I, too, am very sorry that you are facing this new complication. You have been such a valuable source of information and encouragement for me in my own myeloma journey thus far. My oncologist has just started 'tapering' my Induction level doses of the RVD regimen. The Velcade has been stopped for two weeks and soon I am to be on Revlimid-only maintenance that you have been on for 22 months.

I have been reading the posts on this column (though I opted NOT to have ASCT) since I would be starting the maintenance therapy, which is supposed to go on for the rest of my life. This is in line with the generally accepted principle: "Multiple myeloma is not a curable but a man­age­able disease/cancer".

I will be on my guard and watch my pulse rate and also get myself checked for any other car­di­ac complications. I have been taking Lipitor (atorvastatin) for almost 20 years and fortunately I have no history of any a-fib or any symptoms such as an irregular heartbeat (my son does have that).

Makes me wonder how dangerous these drugs are, even at the "maintenance dose levels". I am also going to explore the Velcade maintenance that Karen wrote about, too. The trips to get the weekly shots are a bit inconvenient, but may be worth it IF I cannot tolerate Revlimid maintenance.

I hope your cardiologist can get this new complication under control and that you can soon re­sume your optimum maintenance therapy dose of Revlimid without further complications and remain at the stringent complete response levels.

K-Shash

[Amelia]

Re: Maintenance treatment post-transplant?

by Amelia on Sat Aug 15, 2015 10:14 pm

I have a similar problem like Mike, but my heart skips (arrhythmia). I see a cardiologist who put me on Coreg (carvedilol, a beta blocker). My problem was detected before my diagnosis, but recently I have an issue with my pulse dropping too low.

I too was hooked up to the 24-hour heart monitor, which identified the PVCs (premature ven­tric­ular contractions) problem. I am at the end of my maintenance phase, so I will be coming off the Rev­limid, Velcade and dex. (Yeppie!) I will continue to be monitored by my cardiologist and for now have elected to continue with the Coreg and not have the ablation surgery.

I have faith that God will work everything out for me and I pray that He will work it out for you too.

[JonEman]

Re: Maintenance treatment post-transplant?

by JonEman on Sun Aug 16, 2015 1:18 am

There are other options for maintenance therapy drugs. Have you considered Velcade (subQ)?

Although I've never heard of anyone yet using Pomalyst as maintenance, I wonder if that would be possible. Pomalyst is the next generation of Revlimid so it's still an IMiD (immunomodulatory drug) versus a proteasome like Velcade.

Sometimes you have to make a hard decision on whether the drug treatment is helping or hurting. I personally know 2 patients who had to stop Revlimid after as many as 7 years due to issues that developed over time. It just maybe your body is saying enough of the Revlimid.

So it's important to find an alternative that you can tolerate. I had to give up Kyprolis after 2 years for similar reasons. Not my heart, but my lungs. I moved on to Pomalyst, but I admit it's not for maintenance.

I've never been lucky enough to respond well enough to any treatment to achieve a remission or get to a place where we could ever consider a maintenance level of any drug. I've been active all the time. The drugs hold it back, but I can't stop even for a couple of weeks without my numbers shooting right backup.

[antelope1225]

Re: Maintenance treatment post-transplant?

by antelope1225 on Sun Aug 16, 2015 5:00 pm

Hi Mike B

I always appreciate reading your posts, too. I am sorry to hear about your heart problems.
We are pulling for you

Cathy