[davidainsdaleParticipant]

Hi Dazz

You’ve done very well having two stem cell transplants, but sorry to hear that you are coming out of remission. It can feel like a slog at times, dealing with the side effects, particularly the steroids. I know of others who are doing well on subsequent lines of treatment after two SCTs.

My spine collapsed when I was first diagnosed and am now four inches shorter. Pretty much wheelchair-bound for twelve months so you can imagine that this presented various challenges. I know of others in our local support group who have suffered significant bone damage, so have had to adjust accordingly.

In response to your specific query, I would think that your Clinical Nurse Specialist would be the best source of advice if you’ve not already done so. He/she will be familiar with the difficulties you raise and may be able to sign-post you to other specialist services.

The impact of a myeloma diagnosis on family/ carers/ partners is often overlooked and they have an important role to play, and may need appropriate help and support. I have found Macmillan and our local myeloma support group very helpful … you’re not alone in having to cope.

They say that myeloma is a marathon , not a sprint, and I think that having a positive mental attitude is a good starting point.

Hope this helps.
David

[davidainsdaleParticipant]

Hello gc

Sorry to hear that you are struggling just now with mobility problems as well as myeloma treatment.

I’m a myeloma support group leader here in the North West and have met a number of other patients who have been similarly affected by slips, trips and falls, so you are certainly not alone. It’s a slog but most seem to get through and return to some sort of normality.

The expression ` don’t suffer in silence’ comes to mind, and I know in our area there is lots of help available from various organisations, but first you have to ask. Macmillan are always helpful and a good contact.

Myeloma and some of the drugs are known to weaken the bones, so this may have been a contributing factor, so just wondering if you have been on the bi-phosphonate Zometa?

There may be advantages in having someone come in to do a risk assessment at home, or do it yourself, to avoid any obvious own goals to prevent any further mishaps.

Hope this helps.
David

[davidainsdaleParticipant]

Hello All

Quick update on 2nd line maintenance. Started cycle 50 of monthly maintenance this week. Bloods and pps all normal. Came home and popped open a rather posh bottle of red wine as a small treat on reaching my half century!

Hope this helps.

David

[davidainsdaleParticipant]

Hello jan66

Sorry to hear about your difficult few months since you were first diagnosed with myeloma. If you’ve not already done so it may be helpful to speak to one of the nurses on the Myeloma UK helpline.

I’m a support group leader in the North West, first diagnosed in 2013. I’ve met quite a lot of myeloma patients in this role, and can say that you are by no means alone in your response to the treatment. What they say is that myeloma is very individual which seems to be true, and also that it’s a marathon not a sprint.

Later lines of treatment can sometimes be more successful than the first line, and there are new drugs coming down the pipeline such as the bi-specifics which may be worth asking about.

The Myeloma UK website has a section on clinical trials which may point the way forward for you. I think there may be ways to access some of the novel drugs, for example the compassionate use programme. Myeloma UK will know more about this. Also there may be advantages in asking for a second opinion.

Hope thsi helps.

David

[davidainsdaleParticipant]

Hello joverson

Sorry to hear that you are having problems with DVd treatment.

You’ll may fimd some of my earlier comments elsewhere on this forum site which may be helpful.

In response to ypur questions, I had 8 cycles each of 3 weeks at second line in 2019. Started off OK but it was a slog towards the end. If things become too problematic for you, you should discuss with the medical team who may be able to adjust your treatment plan.

For me, DVd has been very successful, now on cycle 47 of monthly maintenance and no real problems. It’s a long story but I decided against a second SCT and with hindsight this was the right decison for me. I am a couple of year younger than you.

Hope this helps.

David

[davidainsdaleParticipant]

Hello lafleck

Sorry to hear that your husband is having problems which may be linked to Dara maintenance. I assume that it’s the subcutaneous injection he has in the tummy every 4 weeks.

I’m now on Cycle 47 of Dara maintenance and fortunately no real problems except for the dexi fatigue a few days afterwards.

I know that some patients on dara maintenance have their treatment given by IV on a drip, takes a lot longer but may be worth you exploring this as an option.

Hope this helps.
David

[davidainsdaleParticipant]

Hello cjleeds

Glad that you have a forward plan agreed with your consultant.

It’s always hit and miss how patients react to treatment but most seem to be well tolerated. I’ve been on Daratumumab now for four years at second line with no real problems, and it has been very effective. There is a separate post on this forum about 2nd line DVd treatment where I have given regular updates which you might find interesting. I think you might find the dexamethasone a bit more challenging but you get used to it.

You mention second line treatment. There is a drugs finder table on the Myeloma UK website which may be helpful but it’s not easy to find. You’ll see that there are many myeloma drugs now approved and more in the pipeline which means that there are plenty of options for us patients down the line.

Hope this helps, and good luck with your treatment.

David

[davidainsdaleParticipant]

Hello cjleeds

Sorry to hear that you have recently been diagnosed with myeloma, and are now having to decide on treatment options.

If you look elsewhere on the Myeloma UK Forum you should find quite a lot of posts relating to Stem Cell Transplants, and it would be worthwhile chatting with one of the nurses on the Helpline.

I had my own SCT at the age of 60 in 2014 which was very successful and gave me six years remission, and was offered a second at the age of 67 which I did not go through with, and with hindsight was the right decision.

The consultants will have a pretty good idea of whether they think you are eligible but you could always ask for a second opinion which I did. Age is important as you say, but also overall fitness and other medical problems. There seem to be plenty of 70 year olds running in marathons these days.

When I was offered the choice of a second SCT I drew up a spreadsheet of pros and cons, with weighting,in a methodical way. This helped me to decide, and I also spoke to different myeloma specialist. It comes down to a very individual decision, depending on individual circumstances, as well as the various pros and cons.

As a support group leader in the North West, I know a lot of patients who have had SCT and the outcomes have been overall positive.

Hope this helps.

David

[davidainsdaleParticipant]

Hello Fred

Thanks for sharing your story which will give all myeloma patients and carers a lot of encouragement.

As they say, myeloma … it’s a marathon not a sprint!

David

[davidainsdaleParticipant]

Hi Morwenna

Sorry to hear that you have been diagnosed with myeloma and have just started treatment. You don’t say which drugs you are on, but in my experience from knowing lots of patients in our myeloma support group, the side effects are very variable and individual.

The patient information leaflets which are available often give a long list of possible side effects so its not surprising if one or two of these are present.

Very often the side effects disappear after treatment has stopped. Loss of taste is quite common for those on myeloma treatment. If you are worried then you could try the Myeloma UK nurse helpline or GP for a second opinion.

Hope this helps.

David

• This reply was modified 7 months, 1 week ago by  davidainsdale.
• This reply was modified 7 months, 1 week ago by  davidainsdale.

[davidainsdaleParticipant]

Hello glenc

They say that myeloma is a marathon, not a sprint, so it’s probably best to take each day as it comes and not to worry unnecessarily.

I had my Stem Cell Transplant back in 2014 but had family at home to help. Fatigue is probably the main issue whilst you recover, and avoiding any infections. I think that the hospital team would only let you home if they thought that you were well enough to manage on your own, and it is likely that some support might be available through your GP and district nurse, depending on where you live.

I would also suggest making contact with one of the local myeloma support groups if there is one in your area and Macmillan who are both good sources of advice.

Good luck with your DVTD treatment.

Hope this helps

David

[davidainsdaleParticipant]

Hi All

It’s been quite a while since my last post on this forum so I thought it would be a good time to give an update. ( First diagnosed with myeloma start of 2013 ).

Now on Cycle 44 of Daratumumab monthly maintenance. Bloods, paraproteins, organ function all normal. I’m doing well, just the usual few days of dexi fatigue after treatment, Neuropathy continues to improve slowly and doesn’t really affect quality of life. Treatment is proving very effective. Second set of 24 cycles of Zometa completed – hurrah!

At my last monthly appointment I asked if they would do a glucose/diabetes baseline check to save me hanging on the phone for a GP appointment. I believe that patients on long term dexi may be at risk of developing diabetes. Results came back normal so it was useful to have a baseline check.

As ever, hope this helps.
David

[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

[davidainsdaleParticipant]

Hi Dave

Thanks for sharing your experiences of the DVd-T treatment. Good to hear that treatment has been succesful and you are improving. Good luck with you future treatment.

David

[davidainsdaleParticipant]

Hello laflack

Your are best asking your medical team, but from what I know about it I think the answer is probably yes.

Hope this helps
David

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