Hi Sue
Your probably best speaking to your haematology team regarding levels and forward treatment plan. There are also the nurses on the Myeloma UK Helpline who are very helpful if you’ve not already spoken to them.
Hope this helps.
David
Hello myelomamum
Sorry to hear about your myeloma diagnosis. I’m sure it’s been a difficult time for you.
I’ve met a lot of myeloma patients through our local myeloma support group and can tell you that your story is far from uncommon.
The average age for myeloma diagnosis is 71 so you have age on your side and getting fit is probably one of the best things you can do.
My own myeloma journey started in 2012 when I was 58 with plasmacytoma pressing on the spinal chord which was sorted with radiotherapy and pps of 57 which came down rapidly after chemo treatment.
I agree with what rabbit says about side effects, it’s very hit and miss. Fatigue, mood swings, sleep problems, fluid retention, neuropathy are some of the common problems. You may be lucky and sail through but the side effects are usually temporary. The best advice is not to suffer in silence and speak to your haematology team early on if you have any problems.
There are plenty of new drugs now which are very effective, so remaining positive is the best thing. Expect 12-18 months of treatment and then quality of life will hopefully get back to normal. There is plenty of help available, eg Macmillan, but you have to ASK.
Hope this helpful.
David
Hello btu
Sorry that you’ve not had a reply to your post, but good luck with your induction treatment.
I’ve met quite a few myeloma patients through our local myeloma support group here in the North West, and the simple answer to your question is …. it varies between patients, everyone is individual. Some seem to sail through induction treatment with little or no side effects, others seem to struggle.
I’ve had three out of four of your drug combo, the V+C+d, at first line in 2013 and second line in 2019. For me the side effects did increase with each cycle and I was glad to get to the end of eight cycles. Good news is that most do ease quickly after treatment is finished.
Hope this helps.
Davcid
Hi Joverson
Sorry to hear that you are having problems with your treatment.
There are quite a few patients in our myeloma support group who have had Dara without any problems, but I know of one who did, so you may not be the only one.
What seems odd is that you presumably had the Dara injection for a number of months as part of the DVd cycle of treatment before going onto maintenance. So far as i am aware the maintenance jab is the same.
So just wondering if there is any difference in where the injection is being made up, or supplied from.
My only suggestion, apart from carrying on and hoping that it improves , is to have the Dara given by drip rather tham injection and see if this makes a difference.
I’m now on Dara maintenance cycle 57 withno real problems.
Hope this helps.
David
Hi Alexandra
Thanbk you for your kind words.
Pleased to hear that your treatment is going well.
David
Hi All
Quick update from me.
Now starting cycle 55 of monthly daratumumab maintenance. Bloods and myeloma proteins all normal.Just the usual side-effects for a few days after treatment.
Hope this helps
David
Hello spectralis
Sorry that you have felt the need to post on this forum and that you’ve not had a response.
I’m a support group leader here in the North West so have met quite a few myeloma patients over the years.
I’m no expert but I think that not everyone automatically goes on maintenance after a stem cell transplant.There could be a number of possible reasons. I had mine in 2014 and was drug free for five years. The maintenance regime seems to depend on whether you are part of trial or which induction treatment you had before SCT.
If you have responded very well to the SCT and your myeloma levels are very low this might be another reason why you are not on maintanance.
In any csse, I would have expected your consultant or Clinical Nurse Specialist to have explained all this to you. Similarly you should be having regular follow up appointments to monitor your bloods. It may be worth taking someone along with you at your next appointment for some support.
If you can’t get any satisfaction you could always ask for a second opinion.
Hope this helps.
David
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
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
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
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
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
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
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
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
