[davidainsdaleParticipant]

Hi All

Finished my 8 cycles of Darzalax + Velcade + Dexamethasone end of April 2020 and started monthly maintenance at beginning of May. Paraproteins have dropped from 18.9 to undetectable, whole bllod counts , liver and kidney function all normal. So really pleased with these results.

After one month of maintenance I have noticed that some of the side effect problems such as diarrehea and fatigue have improved noticebale but the neuropathy has increased which I find surprising. Specialist nurse has said that it takes a good few months for the drugs to work through the body.Quality of life certainly improving but I had expect to be dancing like a spring lamb at the end of Maintenance Cycle 1 but will have to wait a while longer.

Clexane blood thinner syringes were stopped straightaway but the other prophylatic tablets such as Omeprozal, Co trimox, Aclovir and mouth washes are contining.

Appointment with consultant next week to discuss second stem cell transplant.

Hope this helps

David

[suew1960Participant]

Hello David
Thank you for posting the details of your latest treatment and I am so pleased to hear that you have had such a good outcome.
I don’t post very often but yours is a name I recognise from visiting the site over the past couple of years since I was first diagnosed. You always offer such sound and positive advice.
I think I first read the phrase “Its a marathon not a sprint!” in one of your posts and you were quite right! That is exactly what it is!
It is interesting to hear from someone who is going through treatment in this new Corona world and good to learn that it seems business as usual!
Good luck at your appointment next week. It would be most informative if you have the time to let us know how that goes and if it’s not too nosey to hear how you make your decision.
Best wishes

Sue

[Anonymous]

Hi David,
Congratulations on getting through the cycles of DVD treatment. I am in a similar situation to you and I have recently had a telephone consultation to discuss a second SCT.
About the peripheral neuropathy, this has continued to bother me too (in the painfully prickly, fidgety sense not total numbness or anything). I did some searching online and decided to try Frankincense and Myrrh Neuropathy Rubbing Oil. The reviews were amazing and I have to say it has made an amazing difference to me – I forget about my feet and hands for chunks of the day, I can stand for much longer when cooking etc and I am sleeping better at night. It costs about £18 but I got some on special offer and a bottle lasts for a long time. Personally I would say it is worth it but of course this suggestion comes with the caution that I didn’t take medical advice. Even if it’s a placebo it’s done the trick though!
I hope your appointment with your consultant went well.
Rachel

[davidainsdaleParticipant]

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

[Anonymous]

Hi David,

I’m so happy that the Frankincense and Myrrh Neuropathy Rubbing Oil has given you some relief. I use it twice a day every day and all the pain from my hands and feet has now gone. I just get the prickly sensation/fidgets in the evening sometimes but it is such an improvement and it is much easier to get on with daily activities without the pain.

How great that you’re getting to try the new Darzalex injection! I’ve read about it and people say the side-effects are less than the long infusion so that would be nice. It would be interesting to hear how you get on wth it.

I would say that my energy post DVD has started to come back at last but in the last few weeks it’s been ‘all systems go’ for the transplant. The harvesting was harder work than when I had it done in 2012 (and it was during that really hot weather, driving up and down to Kings because I didn’t want to use the train). Then the consultant decided to remove my brilliant portacath on Monday – which I had thought was to last me throughout the transplant but apparently current thinking is that pic lines are safer in case of any infection. Has anyone else had this experience?

So I’m feeling both nervous and grateful to have this opportunity of a second transplant the week after next, even though I think you’re right that the jury is out on whether DVD maintenance has now trumped the transplant procedure for effectiveness vs side-effects or not. It would be so helpful to know which is best!

I hope you continue to make really good progress on your treatment and get more energy back soon. Having just clicked on the wrong button, did I see that you made a suggestion a couple of years ago about longevity medals? Such a great idea! It made me smile to think of it! Ive done bronze (5 years) already and so my next target is silver at ten years in 2022.

Best wishes,
Rachel

[davidainsdaleParticipant]

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

[gcoulterParticipant]

Hi David

Good to see the side effects seem to be easing for you.
My wife had her first injection last month too, what a difference, in and out in 20 mins.
Like you are pps, bloods etc normal, or as normal as they can be 🙂

You’ve just reminded me, must book those flu jabs!

Good luck

Graham

[richfsModerator]

Hi David et al,

It’s good to read of your early experiences of Daratumumab maintenance. Also encouraging is to see how myeloma treatments are progressing, and things which were once ‘new’ are now becoming mainstream.

I was started on this treatment myself after 8 rounds of DVd starting in September 2022 as a second-line treatment following relapse from the VTD and stem cell transplant in 2019.

I’m interested to hear how you got on as the months progressed on this maintenance treatment?

Best wishes,
Rich 👍

[davidainsdaleParticipant]

Hello Rich

Thanks for your post and kind words.

I’m the support group leader for the West Lancs amd Merseyside myeloma support group. We have quite a few in our group now on Daratumumab, it seems to be quite well tolerated and effective at controlling the myeloma. It’s good that patients and carers in the support group can compare notes.

There is a separate thread on this forum ( 2nd line DVd maintenance ) which may also be of interest if you’ve not found it already.

I have to admit that the 5 months of treatment with 8 cycles of DVd was a slog with various side effects which have been mostly temporary. I finished this in April 2020 , now three years ago. When I started the Dara was given by IV so it meant very long days in hospital on a drio, much easier now that it is by injection.

I’v been on monthly Dara maintenance since then and Zometa infusion. Just finished the Zometa last month after 24 cycles. So I just had my 39th cycle of Dara today. Bloods, myeloma proteins and organ functions all normal so came away from hospital appointment very pleased.

Hope this helps.
David

[sandy123Participant]

Hi all,

I have just started IRD for second relapse and the familiar foot-tingling is starting already. I echo Rachel’s recommendation for Frankincense and Myrrh Neuropathy Rubbing Oil which I have used during previous treatment and I’m always amazed at how well it works. In Chinese medicine at least, there seems to be some scientific thinking behind it e.g.https://www.sciencedirect.com/science/article/abs/pii/S0944711322006286#!

It was fortunate that during my two periods of remission, the symptoms went away however now that I am on long-term medication (having used up both SCTs) I am thinking of trying reflexology once a week for added measure. I am going to my first session this evening and I’ll let you know if it helps.

[Author]

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