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
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
