Hi Julie
Sorry to hear that your dad is suffering with PN. It seems to be quite a common side effect of myeloma treatments. I would certainly agree with Robert above.
The Myeloma UK helpline and your local healthcare team are obviously the first port of call for advice, and there is an advice booklet on this website if you’ve not already seen it.
I have just finished second line treatment of DVd which included 8 cycles of Velcade. The PN flaired up towards the end and carried on for a few months , worse at night time.
Thankfully it has reduced considerably and is little more than a nuisance now. Some tips I picked up from this forum were wearing two or even three pairs of socks in bed, this certainly helped. Also massaging feet and hands with Frankenscence and Myrrh neuropathy oil which you can buy on line from iHerb. Again I found this helpful.
Pre-COVID our local clinic did offer treatment for PN based on massage with oils but this has been suspended temporarily. Something you could enquire about.
Hope this helps and good luck.
David
Hello Marty2019
Sorry to hear of your mishap in the bathroom. These sorts of things can be quite serious and safety at home is often ignored.
Our local myeloma support group arranged a talk last year from the Falls Prevention team in West Lancs which was excellent. They are part of NHS. Local agencies such as Macmillan, Age Concern or even your GP should be able to signpost you to someone in your area who can help with aids and advice around the house.
I spent my working career in Health and Safety and know how important it is to prevent slips, trips and falls both in the workplace and at home. Accidents like these are surprisingly common.
The best advice I ever heard was Take Two' - just take two minutes to think about things before starting to do anything, this is a good way to avoid anyown goals’ at home.
Hope this helps and hope you feel better soon.
David
Hi Dave
Sorry to hear that you are back on treatment but hope it goes well for you.
I had 8 cycles of DVd between November 2019 and May 2020, and am now on Cycle 7 of the monthly Darzalax maintenance. You’ll find a couple of my posts under the Treatment section of this Forum with very helpful contributions from others which may answer some of your questions. I’m now 66 but was 59 at first diagnosis.
In summary, main side effects for me were fatigue and diarrehea and I have to say that towards the end of the 8 cycles it was a real slog. Good news is that my paraproteins are below detection and all other blood counts and organ functions normal, so clearly the treatment has been effective. The neurpathy in my feet kicked in towards the end of Cycle 7 but has settled down now.
I know of a couple of others in the clinic who have had the same treatment but with quite different side effects so it just goes to show that everyone is very individual. I think the main advantage for you is that it is a 5 minute injection rather than the 5 hour drip which I had for most of my treatment.
Hope this helps.
David
Hello Darren
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
David
Hi Penny
Sorry to hear that your myeloma has relapsed but glad that you have found my posts on this forum useful. Everyone is different so it is likely that others will have a different response to the treatment. I did find the Dvd regime a bit of a slog particularly towards the end in Cycles 7 and 8.
I’m now on Cycle 6 of the monthly maintenance and doing well, now seeing a significant improvement in the side effects from earlier treatment, although the neuropathy does seem to increase for a couple of days mid cycle which I put down to the Darzalax injection.
I also thought that a second SCT would be on the cards and have been discussing this with the medical team. The situation seems complicated especially with COVID.There seems to be no clear evidence from trials that a second SCT in combination with Darzalax maintenance will have a beneficial effect, unless anyone knows better, particularly if the response to the maintenance regime is good.
Good luck with your treatment.
Hope this helps
David
Hi All
Just started Cycle 5 of Daratumabad monotherapy maintenance this week. Latest blood tests show blood counts, pps and organ functions all with normal range so well pleased with these results.
This was first time I had the Darzalax by injection rather than by drip. Rumour has it that the side effects are likely to less with the injection, lets hope so ( sounds similar to Velcade ). Had to wait for 5 hrs after the jab to check no adverse allergic reaction, should be less next time!
I am also starting to see a noticeable reduction in the side effects, fatigue and neuropathy. feel that I have more vitality and beginning to return to normal, hurrah.
Specialist nurse advised that seasonal flu jab due next month was OK to have with Darzalax.
Hope this helps.
David
Hi All
Now on Cycle 3 of DVd maintenance. Bloods and pps are all normal so very pleased with the results and otherwise OK.
Still feeling lethargic most days, not much get up and go but managing to potter round in lockdown. Neuropathy more of a nuisance – thanks Rachel for the rubbing ouild suggestion. I did buy some on the internet and would agree that it does have some beneficial effect so will keep using just to knock the edge off pins and needles. Medics have told me that it could be `months not weeks’ before energy levels start to pick up again.
Second stem cell transplant on the back burner for now, mainly due to COVID restrictions and I remain to be convinced about the gains from having it.
Monthly maintenance of Dazalax will be a 5 minute injection ( similar to Velcade ) from next month which will be a welcome chnage from spending 5 hours on a drip.
Hope this helps.
David
Hi Graham, Peter and all
I finished the end of Cycle 8 end of April. Blood test results from 2 weeks ago ( mid May ) only just back which show myeloma paraprotein undetectable ( less than limit of detection 2g ), whole blood counts, liver and kidney function all normal. So really pleased with these results which shows that the treatment has been effective.
I managed all 8 cycles without any reduction or change in drug doses but have to admit that the last few weeks were a real slog. No major issues but plenty of side effects to manage, particuarly diarrehea caused by the Velcade and fatigue and lack of sleep probably the dexamethasone.
Started monthly maintenance at beginning of May so will start a new thread on the forum to report progress on this.
Hope this helps
David
Hi Graham
It’s good to hear that your wife has responded well to the second line treatment and that the finishing line is in sight.
I’ve been told that the Darzalax infusion during maintenance must not exceed 8 weeks ( normally 4 ) otherwise it all stops. This means that if a second stem cell transplant is started and then a problem such as infection arises during harvesting or transplant then this could jeopardize the continuation of the maintenance regime.
I think that the risk of losing the maintenance phase of DVd is certainly a factor to consider.
As you say in your post, the advantages of a second stem cell transplant post DVd are not clear and whether this would be added to any period of remission, I suspect not and bearing in mind the six months of treatment and recovery, it does seem a fine balance.
There is also the option of going down the stem cell route as part of third line treatment.
So it all seems very complicated, but the good news is that at least we have options. I am hoping that the maintenance regime will be effective at holding back the myeloma for a couple of years so fingers crossed.
Hope this helps.
David
Hi All
I thought a quick update on my treatment may be of interest.
Not too far off the finishing line now, I’m coming towards the end of Cycle 7 but have to admit that I am finding the side effects a real slog ( fatigue, bowels, neuropathy etc ). The side effects seem to vary day to day and hour by hour so difficult to plan ahead. Nothing major so hoping these will reduce once treatment finishes.
My pps continue to drop nicely, now 2.3 at the end of cycle 6 down from 18.9 at the start, so the DV-d is clearly working. My other blood counts go up and down during the cycle but are not causing any concern to the medics.
A second stem cell transplant later this year has been mentioned but I understand that there are ( financial ) restrictions on the timing of the four weekly Darzalax maintenance which may introduce added complications. Also the CASTOR trials don’t seem to mention this and it is not clear how much benefit I might gain – any views from anyone??
I’ll start a separate post about the monthly maintenance plan. I am hoping that once this starts I can return to some sort of normality and regain some of my normal fitness.
Local haematology unit has made a number of changes for COVID-19 but the usual myeloma patients seem to be continuing with their treatment plans.
Overall, I’m pleased with progress but it has been hard work.
Hope this helps.
David
Hi Peter
Good luck with your treatment, hope it goes well.
David
Hi All
Thanks Graham and Rache for your posts which are very helpful. I thought I would give a quick update now that I am near to the end of Cycle 3 of the DVd treatment regime.
My pps after two cycles have dropped from 18.6 to 5.8 which is very encouraging, and like Graham says the best Xmas present you could ask for. My whole blood counts are normal except the platlet count goes up and down each week between 200 and 50, presumably due to the Velcade.
The main issue is the fatigue which varies day to day. I do my best to keep active but sometimes it’s a bit of a struggle. No real problems otherwise except for a few which need managing like poor sleep, bowels, dry mouth, sore tummy from jabs.
Probably best summed up by the myeloma saying ` it’s a marathon, not a sprint’.
Good luck and Happy new year to everyone else on treatment.
Hope this helps.
David
Hi Becky
Sorry to hear that your dad is having problems, hope he gets sorted quickly and makes a full recovery.
The nurses on the Helpline are probably best placed to advise but I think the answer to your question is yes. In our local myeloma support group there a small number ( all men ) who have had similar problems.
I have just started treatment myself and have daily blood thinning injections of enoxaparin to prevent clots. So one assumes that this is something which the medics will have on their radar screen.
I honestly don’t know what the answer is but I try and do as much exercise as I feel I can cope with to keep the circulation moving.
Hope this helps
David
Hi Tony and All
A report in the Times Business section this weekend may be of interest. Glaxo are seeking market approval for a new drug Belantamab for myeloma patients who have already had three lines of treatment. Perhaps this is the one we have been waiting for? Here is a link:
Hope this helps
David
Hi Tony
Sorry to hear that you have recently been diagnosed with Stage 2 myeloma, something none of us wants to hear.
Florence has already made some good points. It’s difficult to draw any conclusions from the statistics – Myeloma UK have published figures to the effect that a fifth of patients die within 60 days and that the average age of diagnosis is 71.
On the positive side, our West Lancs and Merseyside myeloma support group has two ladies who are now 22 years post diagnosis and one chap 18 years post diagnosis, with several more than 10 years on.
Age and general fitness seem to be factors in favour of a long remission.
I started my myeloma journey in 2012, aged 58 and like you have Stage 2 myeloma. First line treatment went well and expect to be starting second line later this year. Even since 2012 the number of treatment options and their efficacy has increased considerable, the hope is that it will become a chronic condition which can be kept under control.
Hope this helps.
David
