As many of you know, my DBF was diagnosed in February. He went through 4 months of chemo (Revlimid, Velcade & Dex) and in early August, he had an autologous stem cell transplant.
His 100 day post transplant appt. with the myeloma specialist did not go as we had hoped. His kappa light chain numbers are still elevated above the normal range. The specialist has suggested 2 months of consolidated treatment with Revlimid at the regular dose followed by maintenance Revlimid indefinitely.
Has anyone else been on Revlimid long term? What was your experience?
I am sorry that the light chains have not diminshed as you hoped, Kim. I hope Revlimid will improve your boyfriend's condition. Sending positive energy and good thoughts to you both.
I was on a different protocol (Kyprolis, Thalidomide & Dex), 4 months then autologous SCT. While my free light chains had disappeared before transplant, those pesky m-proteins in the blood lingered, though at very low levels. I then continued with 4 more cycles of my induction chemo. By the last month, just the tiniest trace of m-proteins remained - the amount too small to measure - and on my next check up a month after finishing 4 months of consolidation they were gone. Bone marrow biopsy was clean. So don't lose hope. I can't say that your boyfriend's myeloma will react the same way mine did, but my docs told me that the markers can remain in the blood for some weeks or months, sort of residual, even if the myeloma is inactive or gone. So don't lose hope! I can't say anything about longterm use of revlimid, but I am very happy that the clinical trial I was in included 4 months of consolidation chemo with Kyprolis after transplant - it was the final knock-out punch in my particular case. I do not have any maintenance therapy (also part of my trial) I now have checks every other month and so far, all is good, no signs of relapse. (I had SCT Sept 30, 2013 and finished consolidation chemo March 2014). Good luck to you both! How has his recovery from SCT gone? Hope it was a smooth ride!
Hi Tammy, Thank you for sharing your experience with me . It is always helpful & encouraging to hear what others have to say. His kappa light chains started out at 300 and they are currently down to 3.2 While this is still outside the normal range the myeloma specialist feels the Revlimid will bring them to where they need to be. We are also looking into diet & supplements to work in conjunction with the prescribed treatment. We have not lost hope. We've got this!!
As far as his recovery from the SCT, I am so very proud of him. He has done so well. He did develop C-diff on day 8 / 9 that resulted in Colitis. He spent 5 days in the hospital with that but, he never got sick from the Melphalan (which was my biggest fear). Everything went pretty smoothly. The transplant was done outpatient. He was checked into the hospital 2 days prior and was given Melphalan both days. On the third day he was reunited with his stem cells and was released shortly after. The next 2 and a half weeks were spent going to the hospital everyday for 5 hours of hydration & monitoring. After a 6 week recovery period, he returned to work full-time. He has a lot of love & a supportive family and a lot of prayer. Never underestimate the power of prayer. God is so good. We are both very grateful, thankful & blessed!
This seems like pretty standard therapy to me. Concerning maintenance after the consolidation, revlimid is a standard option and you can always make a course correction later if needed. I unfortunately developed a severe skin rash from the revlimid after about 6 months and had to switch to bortezomib. If you want to think ahead about maintenance therapy options, or just satisfy yourself that you are in fact being recommended a quite standard approach, there is an article by Sevindik and Kumar, Current Status of Maintenance Therapy in Multiple Myeloma. published this month. There is a link to the article in the Myeloma Daily newsletter of a couple of days ago.
Response can deepen after an autologous stem cell transplant, so just hang in there and see how his numbers do.
Hi Kim, I looked at my lab work to see what the normal range is for Kappa light chain. In Dallas the normal is 3.30-19.40. I would encourage your DBF to look and see what the normal range is at his medical center. It sounds like his Kappa number has came down considerably!!!!! Maybe it will take a few more months to have his numbers actually be at their accurate state. Prayer is positive!!!!! I am sending prayers from Texas your way. Your friend Juli
On light chains, the usual approach is to look at the kappa/lambda ratio as well, in addition to the absolute numbers. My understanding is that normally the ratio is the more significant number to look at. juli said:
Hi Kim, I looked at my lab work to see what the normal range is for Kappa light chain. In Dallas the normal is 3.30-19.40. I would encourage your DBF to look and see what the normal range is at his medical center. It sounds like his Kappa number has came down considerably!!!!! Maybe it will take a few more months to have his numbers actually be at their accurate state. Prayer is positive!!!!! I am sending prayers from Texas your way. Your friend Juli
Victor, Thank you for mentioning this! This got me to thinking and double checking. The numbers I mentioned above are incorrect. These are the correct numbers - all measurements are in mg/dl. ...lambda is 10.2, normal is from 5.7 to 26.3, kappa is 34.3, normal is 3.3 to 19.4, lambda/kappa ratio is 3.36, normal is .26 to 1.65
So, as stated, Revlimid is the plan. We are also looking into diet & naturopathic alternatives to work in conjunction with this.
I am just wrapping up long term Revlimid maintenance therapy. I've been on Rev 10mg for 4 years (48 months). I started out on a 28 day dose but bumped down to 21 on 7 off when my white cell and platelet counts continued to drop. I'm ending the therapy now due to the concern of developing a secondary cancer. Studies seem to indicate that there is a low percentage chance of developing leukemia when on Revlimid for long periods of time. Other than the drop in cell counts, I have tolerated the treatments well.
Just a bit of background, I was diagnosed with an aggresive form of Myeloma in 2010 (Stage III). I've had severe bone infiltration (lost 10% in height due to spinal compression from bone loss). I went through multiple round of radiation, followed by chemo (RVD) and finished off with a stem cell transplant. I had a three month break from any treatment to allow my body to recover before starting the maintenance therapy. I've been in remission since the end of active treatment and am continuing to be monitored monthly, along with getting IV Zometa to help regrow my bones. I am nonsecretory so we can really only monitor me through the light chains. My doctor mentioned that everyone's Kappa and Lamda numbers are unique, so it's really the ratio you need to watch. My ratio is 0.98 from my last lab work this month. I know my Kappa and Lamda numbers were crazy high when I was going through everything.
Hello Kim, sorry to hear that it has not went as well as hoped for, as you know I also went on an aggressive maintenance therapy after the transplant. Mine started with dex,velcade and revlimid and eventually went to just revlemid and low dose dex,. It worked for me for about 18 months. The revlimid started to cause low blood counts and skin issue's. They had kept me on it due to light chains being elevated however the numbers were to small to quantify. Of course then I became refractory to it and the myeloma came back. Still don't know the results of the krypolis, will find out today. Be careful with the zometa, as you know it helps prevent bone damage and can help rebuild the bones however it can cause an issue with the jaw bones and you can lose your teeth. The odds are very low for this however at 3 years they increase so the interval for zometa needs to be adjusted from monthly to quarterly, Make sure he watches his blood pressure and heart rhythm as the transplant can cause a fib, you know I have had big issue's with this. I had what is called a flutter, it may have been coming and going since the transplant in January of 2013. I was back in the hospital in November for a week due to my heart, they think it is corrected this time, they did a cardio oblation, it took a week to get rid of pneumonia. I had the follow up appointment with the heart doctor Friday, my heart was down to less than 40% and was at a very high risk for a heart attack or stoke. No body knew it, I was just getting tired, the good news is that it is now coming back and he expects it will return to normal. So have him keep an eye on his heart, this was all caused by the transplant.
One thing I did read is that there is a risk of becoming refractory to revlimid if used for to long an interval after you have a transplant. I just don't where I read it.
Cameron, I just read your reply, after reading your reply I just wanted to let you know that there is significant hope and reassurance o be found in you husbands story. I hope and pray that things continue to go well..
After completing 2 months of Revlimid consolidation therapy, my DBF saw his MM specialist earlier this week and its good news. His kappa/lambda ratio has come down from 3.36 (at his 100 day post transplant appt.) to 2.1 While this is still above the normal range, it is moving in the right direction. He was told he is in "near complete remission". As the specialist said, he has seen the numbers continue to come down for over a year following transplant so, we are greatly encouraged & very thankful.
Fantastic news! This was my own experience, on a carfilzomib trial. And I achieved stringent complete remission, 2 months after completing consolidation chemo. So keep thinking good thoughts. You'll be in my prayers.
JerseyGyrl said:
After completing 2 months of Revlimid consolidation therapy, my DBF saw his MM specialist earlier this week and its good news. His kappa/lambda ratio has come down from 3.36 (at his 100 day post transplant appt.) to 2.1 While this is still above the normal range, it is moving in the right direction. He was told he is in "near complete remission". As the specialist said, he has seen the numbers continue to come down for over a year following transplant so, we are greatly encouraged & very thankful.
Thank you Tammy. We are encouraged by the news and are praying his numbers continue to come down. Thank you for your prayers we really appreciate them.
Tammy said:
Fantastic news! This was my own experience, on a carfilzomib trial. And I achieved stringent complete remission, 2 months after completing consolidation chemo. So keep thinking good thoughts. You'll be in my prayers.
JerseyGyrl said:
After completing 2 months of Revlimid consolidation therapy, my DBF saw his MM specialist earlier this week and its good news. His kappa/lambda ratio has come down from 3.36 (at his 100 day post transplant appt.) to 2.1 While this is still above the normal range, it is moving in the right direction. He was told he is in "near complete remission". As the specialist said, he has seen the numbers continue to come down for over a year following transplant so, we are greatly encouraged & very thankful.