Hello mmsuffrah
Thanks for your post. Glad to hear that your 2nd allo SCT has gone well, it can feel like a bit of a slog at times so it’s nice to have a little treat now and again. Hope that you have a good long period of remission.
I was offered a 2nd SCT at 2nd relapse but for various reasons decided against it. One reason, as you point out in your case, there is very little data or research on the effectiveness of the various options. In hindsight this was the right decision for me because the monthly dara maintenance has proved very effective, now on Cycle 36 of maintenance, pps undetectable and doing well. I still have the option of a 2nd SCT at 3rd relapse if needed.
I have heard that the treatment regime following DVd+SCT has changed recently and now it is a few months of dara consolidation' rather than continued monthly maintenance’. So a drug free period after transplant would have been an advantage.
Interested to hear that you have had the dexi` buzz’. I’m still on dexi for two days each month and have never had the highs, just lows of sleepless nights and fatigue for a few days afterwards. Just shows how we all respond differently.
Hope this helps.
David
Hi Everyone
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 35 of monthly maintenance following 2nd line treatment of DVd in 2019.
I am keeping well with bloods, pps and organ functions all normal, so very pleased at how effective the DVd and monthly maintenance is. So that’s my Xmas present all sorted.
Neuropathy continues to improve and is there just in the background, not really a problem or noticeable. Tired with the dexi for a couple of days but very predictable.
I’ve been keeping an expensive bottle of red wine to one side as a treat, so have this to look forward to!
Hope this helps.
David
Hello ree2112
Sorry to hear that you are having a few side-effect problems with your DVs treatment. It does seem very hit and miss as to how it affects different patients.
I had eight cycles of DVd starting October 2019, and am now on Cycle 33 of monthly maintenance. It does seem very effective, and no real problems apart from some fatigue and a bit of neuropathy.
If you look through some of the earlier posts in the Treatment section of this Forum, you’ll find some more detailed comments from me and other contributors about 2nd line DVd treatment.
Hope this helps, and good luck with your treatment.
David
Hello mmsuffrah
Glad that you found my earlier posts helpful. I think that the million dollar question is whether SCT adds to the remission period of maintenance, or simply runs in parallel with only marginal additional benefit. I am not aware that there is any research that has been undertaken to help address this question.
It was a difficult decision for me, but looking back with hindsight it was the right decision not to go for second SCT. I am now on Cycle 31 of Darzalax maintenance with bloods and pps all normal, so it’s very effective and I am tolerating it well.
I always have the option of a second SCT at third line treatment in reserve. Happy to discuss further, my contact details are on the West Lancs and Merseyside myeloma support group website.
Hope this helps
David
Hello twinz
I forgot to mention that the other thing which really helped me was wearing thick tight socks. At one point in order to get any sleep I was wearing three pairs of socks and trainers in bed. Sounds daft but it worked.
Hope this helps
David
Hello twinz
Sorry to hear that you are suffering from neuropathy. It’s quite a common side effect of myeloma treatment particularly due to the Velcade. I had it quite bad following second line treatment of DVd.
There is quite a lot on this forum and the Myeloma UK website about it if you do a search. I would certainly mention it to your clinical team because they may be able to help with some medication or change the treatment.
In answer to your question, it seems very individual. I know some patients whose neuropathy improves very quickly, others not at all. In my case it has reduced gradually over two years and is now very much better.
You can buy neuropathy oil from Amazon and other internet suppliers which I think does help.
Hope this helps
David
Hello Mark
I would like to add my own words of encouragement to those you’ve already had.
I was diagnosed in 2013 aged 59 and also pretty much wheelchair-bound for 12 months.
First round of treatment was very successful and I started second line DVd in 2019.
If you look on this Forum in the treatment section you’ll find some of my earlier posts.
I have to say that it was a slog but well worth it. Now on Cycle 30 of monthly Darzalax maintenance, bloods and pps all normal,and able to enjoy my retirement. I am also the support group leader for one of the groups in the North West.
Hope this helps.
David
Hi Brian
Good luck with your treatment.
There is a separate thread on this forum where I have posted updates on my Darzalax maintenance treatment.
Now on Cycle 29 of maintenance, bloods and pps all normal. This followed 2nd line treatment of DVd in 2019.
I’ve been told that for me, Revlimid is the most likely treatment for third line.
Hope this helps.
David
Hello Ianmac
Good luck with your second round treatment. There are quite a few of us in our local support group who have had or are having DVd treatment. I think each patient experience is different and the dosing regime does seem to vary from individual to individual.
There is a separate thread on this forum ( in the treatmnent section ) which records my experiences and you might find useful. I had 8 cycles, a straight 168 days without a break and if I am honest it was a slog towards the end. Fatigue, bowel problems and neuropathy being the main side effects for me but these can be managed. That said, the treatment does seem to be generally well tolerated and very effective. I started in October 2019 ( age 65 )and am now on cycle 28 of monthly maintenance with bloods, organ functions and pps all normal.
Hope this helps
David
Hi Poco Loco
Sorry to hear that you’re having side effects from your Zometa treatment. As always, the first people to approach are your medical team and then the Myeloma UK helpline.
I had 24 cycles of Zometa in 2013 and started again last year, now on cycle 13 of 24. I also know others in our myeloma support group who are on this treatment as well.
What they call `Zometa flu’ after the first infusion seems very common, ie hot and cold shivers, but this seems to go away with subsequent infusions. Fatigue also seems to be common for a day or two afterwards, and my skin seems to be more sensitive as well. Other than these fairly minor side effects it seems to be fairly well tolerated.
Hope this helps
David
Hi Suzi123
Sorry to hear that you have been diagnosed with myeloma. You’ll find plent of advice on this forum and I would recommend joining one of the myeloma support groups if there is one near to you.
I was diagnosed in 2013 at the age of 59, now 9 years on. So, to answer, your query I had DVd as second line treatment in 2019, that is without the Thalidomide. ( I had this with CTd as part of first line treatment when my pps started at 55). The DVTd combination is quite new so there probably aren’t many who have had it yet.
I had eight cycles of DVd over 168 days, and if I am totally honest is was a slog particularly towards the end. Neuropathy is one of the side effects to watch out for. That said, I started with pps of 19 and my bloods and pps are now normal, I’m now on Cycle 25 of monthly maintenance. So it does seem to be a very effective treatment. I started a separate thread on this forum about 2nd line Darzalax maintenance which may be of interest.
Hope this helps.
David
Hi Everyone
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.
David
Hello Normant
Sorry to hear that you have myeloma and that you have concerns about your treatment. Happy to share my experience which may help.
CTD seems to be a well established first line treatment and you would expect this to be a well trodden path for haematology consultants. I would suggest that care is needed in comparing different treatment regimes since the drug doses can vary ( eg CTD-attenauated ) and with and without treatment breaks, which probably make at least half a dozen different combinations.
I was diagnosed in 2013 aged 59 and had CTD for six cycles of three weeks each continuously ie no breaks. Cyclophosamide dose was 50mg. 10 for 3 days each week, dexamethasone 20 for each of 4 days per week and Thalidomide 50mg 2 each day. My paraproteins started at 55 and reduced to 2.5 at the end of treatment, then went on to have a stem cell transplant.
I have to say that at by the end of 126 days of CTD I was suffering with quite a few side effects and was more than glad to stop. It was a slog so quite surprised that you mention the possibility of 12 cycles.
I had a good period of remission, but relapsed in 2019, 2nd line treatment of DVD and now doing well with good quality of life.
Hope this helps.
David
Hello Shaz
Sorry to hear that you are having back problems, but you ask a very good question, especially since we all spend a lot of time in bed. My spine collapsed by four inches when I was first diagnosed and have experienced the same problems. Fortunately, my condition has stabilised with treatment and exercise.
You are probably best talking to your healthcare team first since everyone is different and individual. They may refer you to a physiotherapist who could advise.
I found that placing a board under the mattress helped to give support and also buying a new mattress. Personally I have found the beds used by Premier Inn to be the most comfortable ( no commercial interest) and you can buy them online, but they are not cheap. We have one at home and find it very comfortable.
Another tip … I used the nordic walking poles when I go out to help support my back, again an easy win, but very useful.
Hope this helps.
David
Hi
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.
David
