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
Hi ironbear62
Glad to hear that your stem cell transplant has been successful but you can do without being messed around by the system.
My suggestion is to contact your MP and ask him/her to get in touch with your Clinical Commissioning Group Chief Exec.
Hope this helps.
David
Hi Christine
Sorry to hear that you are still suffering from fatique, I had my Stem Cell transplant like you aged 59, now 67 but still feel tired each day, but put this down to old age. I don’t think you are in anyway alone feeling like this.
They say that having myeloma is a marathon, not a sprint, so it pays to take advice on how best to manage the fatigue. There is plenty of advice available from your healtcare team, Myeloma UK and Macmillan. They also say not to suffer in silence.
Your employer should make reasonable adjustments for you to work following treatment.It may be worth speaking to your Trade Union safety rep if you have one.
I do what I can when I have the energy , and then have a rest ( daytime TV ) when I’m whacked!
Hope this helps
David
Hi All
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
David
Hello Jaydee63
Sorry to hear that your dad has been diagnosed with myeloma and that you and your family are having a rough time just now.
I would certainly agree with Jane’s comments above and in my role as support group leader for a myeloma group in the North West I have met a number of patients and families in similar circumstances to yourself. They say that you should not suffer in silence' and you only get what you ask for’. Your haematologist clinical specialist nurse should be able to advise and provide access to the mutli disciplinary team. COVID restriction seem to be making everything more complicated just now so you may need to be persistent.
Hope this helps
David
Hi Claro70
Sorry to hear that you are facing a few challenges just now.
We have a myeloma support group here in the North West, and your experience is by no means unique with others in our group being on a similar journey. We have found that carers find just as much value from talking to others in the support group as do the patients, particularly when family members go to the same hospital, have the same consultant etc. This may be something you have already tried, but if not, it’s certainly something I would recommend.
Hope this helps.
David
Hi Susieundies
Sorry to hear that you are struggling with treatment, it can be a real slog at times.
I would certainly agree with Mulberry’s comments about the value of finding a local myeloma support group.
Our group here in the North West is very active, patients and carers both find it very valuable talking to others similarly affected, particularly if they are at the same clinic. Even to find someone with a listening ear can be a big boost.
Hope this helps
David
Hi All
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.
David
