Hi Kevin, I still have a couple wks until I have to make a decision which I am finding very hard so reading this has been very helpful although not yet decicive.
If you come up with any new info you thk might help me please post.
I am not sure if there is anything else I could say that would help al be it to say everyone is different, the disease and treatment seem to be different for each person and the decisions you make are yours after listening to what your consultant and care team tell you.
My decisions are easy as I follow what my consultant and others have said during my journey.
I had never heard of myeloma before being diagnosed and still don’t know too much of the details. This is my choice as it is something that has taken some of my time and wont let it take anymore than necessary. I have no idea of alll the different counts and levels. The only thing I take an interest in is the paraprotein level.
Am quite happy for you to message me with any questions you may have and will answer if I can.
I believe that I am in a similar position to you ie having to decide about a second Stem Cell transplant following 8 cycles of Dvd and now on Daratumabad monthly maintenance.
On Cycle 6 of maintenance now and starting to pick back up again nicely, except for a few days mid cycle when the neuropathy flares up.
I think if the remission periods were simply additive, say 3 years on maintenance and then an extra 4 years for SCT giving 7 years in total, I would be first in the queue but I have seen no evidence to suggest that this is the case, and at worst the two periods may just overlap completely but six months is lost in treatment and recovery.There is always the risk that maintenance may have to be suspended or stopped following a second SCT.
I think there may be other options, one is to have a second SCT at the end of monthly maintenance just when the Daratumabad stops working, or saving the next SCT until third line treatment.
As always, these things are best discussed on an individual basis with your medical team.
Hope this helps
Congratulations on finishing your 8 cycles of DVD!! What a marathon!And to all other fellow DVD-finishers.
I had my second SCT in July this year, following DVD treatment. The consultants in London estimate that remission for a second transplant is approximately half of what you had for the first one. I had my first SCT in January 2013. I had a very slow relapse but I was six years treatment-free so I guess it could be three years this time? I found it a very hard decision because the maintenance option looked really tempting. My particular consultant recommended the SCT so I trusted his decision for me (Myeloma is such a personal condition) and now I’m through it I am delighted and relieved – although until there is enough data to do comparison trials I don’t know how they will know which is really best. I am currently awaiting the results of my 100-day bone marrow biopsy which took place a bit late because of the pandemic.
Just realised you wrote this a while back so you’ve probably made your decision by now and I hope it goes well whichever option you settled on.
Yes I’ve made my decision and it’s to go with a 2nd SCT but I wouldn’t have been able to make that decision without the help of people on this forum and obviously my Drs.
I’m not due to go in until the 24th so am still quite nervous so was pleased to recieve your reply so thank you. I’m sure all will be good.
It’s bit a while since I posted here with an update. Just started Cycle 10 of Darzalax monthly maintenance. Bloods, pps and organ functions all OK, so it’s a good start to the New Year.
Side effects not too much of nuisance and seem to be settling down. Neuropathy flairs up every now and again for a few days and then settles back down.
My consultant has advised me to take the COVID if and when it is offered to me.
Hope this helps.
Thought it would be good to give another update.
I’m now on Cycle 16 of Darzalax monthly maintenance. Bloods, pps and organ functions all normal, so very pleased with the response.
Side effects, particuarly the neuropathy in my feet, continue to improve.
I’ve had the double COVID jab but still being cautious where I go and what I do but have managed a couple of family visits after lock-down.
I’ve had several conversations with different consultants about the efficacy of a second stem cell transplant in combination with DVD. I’ve drawn up a long list of pros and cons which I have to admit were fairly evenly balanced. It’s been a difficult decision but I’ve decided against a 2nd transplant and will stick with the maintenance.
Hope this helps
Hi all I have just relapsed after being treatment free since 2009. After having a PET scan it was found I had a fracture of the T10 vertebrae along with numerous lesions my PPs had risen to 14 also large rise in light chain ratio. Starting DVD tomorrow hoping all goes ok. It’s good to hear you all seem to be coping with the treatment so it can’t be too bad. I was asked about 2nd stem cell transplant and at present it’s a no but I might have a change of heart. Will update later in treatment
Regards to you all
i have had dara for 28 months (this includes first 8 dvd). i have tolerated it very well and all my bloods and organ function levels have been normal too.
i do experience usual fatigue, and dex side effects on the week have treatment. i am experiencing some bone pain side effects too over the last 5 months so i have extended the dex dose over several days rather than just on the day of treatment.this seemed to work last month. i did not have a second sct.
Thanks for your post and update.
Good to hear that you are doing well on the Darzalax maintenance,it seems to be well tolerated and your experiences are very similar to mine. PN still flairs up now and again, but consultant said that this was most likely due to the Velcade rather than Darzalax.
It’s been a while since I last posted so thought it was a good time to provide an update on my monthly Darzalax maintenance treatment. Now on Cycle 25 of maintenance.
I am keeping well with bloods, pps and organ functions all normal, so very pleased at how effective the DVD and monthly maintenance is. Neuropathy continues to improve and is there just in the background, not really a problem or noticeable. Tired with the dexi for a coupkle of days but very predictable.
I’ve been keeping an expensive bottle of red wine to one side as a treat, and have now opened it to celebrate start of cycle 25!
Hope this helps.
Enjoy your wine David,I hope it kept well! 25 cycles & still going strong is definitely worth celebrating. You are a trail blazer giving hope to the likes of me, coming up behind you. It’s good to hear that Daratumumab is giving you good quality of life, and a long period of stable disease. May you be continuing to post such positive messages for a long time to come.
Hi all so good to hear dara as maintenance is working well. I have finished dvd and am getting ready now for second stem cell transplant. Got 12 years remission from 1st one so hoping for another long one.Like you I have tolerated DVD well apart from constipation. My biggest problem was the amount of weight I lost before relapse and trying to regain it since. Wishing everyone all the best for your continuing treatment and keep a positive outlook
I’m new to the forum but having read the ongoing discussion about Dvd started by David I thought people may be interested in our experiences.
My husband, Ray, was diagnosed with myeloma in 2015. Ctd treatment did not get his paraprotein levels down low enough for a SCT but a couple of cycles of Velcade did the trick & he had the SCT in September 2016.
I was very concerned about the side effects from such aggressive treatment but, thanks to the brilliant medical team, he sailed through the SCT. The result was 4 years of remission.
His relapse coincided with the start of the covid pandemic (not good timing) & by June 2020 his paraprotein levels had risen to a level where further treatment had to be considered. By August his paraprotein levels were at 26 & his free light chains were 700. His haematology consultant at our local hospital recommended a second SCT but did not suggest any alternative. However, after much research we found out about the Dvd option.
After much soul searching, several telephone discussions with Sarah at Myeloma UK (who was brilliant at providing information & answering our many questions) & several with consultants at St James Hospital in Leeds we decided that Ray would go down the Dvd route.
Our final decision was based on Ray’s age – he was 74 at the time of relapse (fit & healthy apart from myeloma); the added risk if he contracted covid before his immune system recovered ; uncertainty around when the SCT would be available to him and the ways in which treatments were developing which, in turn, seemed to be influencing ideas about treating myeloma.
Ray has now completed 21 cycles of treatment. His paraprotein levels are so low as to be undetectable & his light chains are normal. There are side effects. During the early stages of treatment he had to have a transfusion of platelets. He has some nerve damage to his hands & feet but not to the extent that it prevents him doing everyday activities. There is some tiredness for a couple of days after treatment & he is slightly anaemic.
All-in-all, we think that the Dvd route was the best option for us.
One of the discussion forum volunteers here. Great to hear that DVD route has worked so well for Ray and he has been able to return to almost normality. Hope he continues to stay well. My dad unfortunately didn’t have much luck with the DVD but is now on a new combo so fingers crossed this works well for him. He’s already feeling much better since the change. It just goes to show what a unique condition MM really is. All the best for you and Ray with the continued treatment x
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