[cjleedsParticipant]

Hello,
I am 70 years old and newly diagnosed with lambda light chain myeloma. My consultant thinks it is time to start treatment as my creatinine level has gone to 180 which may indicate kidney damage.
Our initial discussion was around two treatment options DRd or the SCT induction route with DVtd followed by SCT .I realise I am getting into the older category for SCT but I am keen for this if it offers the best chance of longer remission and reading about the new DRd treatment it always says that it is a good option for those not suitable for SCT , seeming to indicate SCT is still the best option if offered . I would be grateful for anybody’s thoughts and also experiences of SCT in the over 70’s

[glencParticipant]

Hi. I will soon be going through DVTD treatment followed by SCT, but I am only 59. However my friend has just been through the same treatment with SCT earlier this year and she is 68. She is now in remission and doing well, although still very tired. She coped well with DVTD. The SCT was unpleasant but she feels worth it. I suppose you can only take the advice of your consultant about whether they think your are fit enough. Best wishes with the decision making. It’s very difficult. X

[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

[cjleedsParticipant]

Hello again,
Firstly a thank you to Glenc and David for their responses.
I met with one of the consultants at St James’s Leeds on Wednesday and although they agreed I am a relatively fit 70 year old they suggest that DRD rather than SCT would be best for me. They did say they would do a SCT if I absolutely insisted but both treatments offer potential remission for 5 years and DRD comes without the risks of SCT which they said was up to 2% or 1 in 50 at my age. Good news is my creatinine has fallen again but my free light chains are continuing to rise so looking at starting treatment in a month or two.
One thing I forgot to ask is about treatment options after DRD . I noticed from the website the sone have had Daratumumab as a second line after SCT but I need to ask what happens as a secondary treatment after DRD
Thank you all again

[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

[joversonParticipant]

I’ve relapsed and just started DVD . I’m finding the side effects very challenging.. and am wondering if this continues for the whole 24 weeks and also once on 4 weekly injections. At the age of 73 I have a small window to consider a 2nd SCT. My first one was very successful and I was over 13 years treatment free. If continuing on DVD was relatively side effect free I would prefer that option I think . Can Anyone with similar experience advise ?

[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

[chris55leesParticipant]

Hello joverson,

I was diagnosed in June 2012 and had my SCT May 2013 .I was on the Myeloma X1 clinical trial and received Lenalidomide maintenance
Until March 21.
September 21 I began DVD treatment .The results showed it was working however I was feeling bad .In December 21 my consultant recommended I have a break from treatment for heart and lung tests .I was off treatment for 5 weeks and tests showed my heart and lungs had not been damaged and I felt back to normal .When I resumed treatment there was none of the previous breathing problems.
In June this year I stopped Daratumumab treatment because I had relapsed.

I have now started a new treatment .

I did have bad experience Dbd but stopping a few weeks resolved it .

Obviously the DVd treatment didn’t work as long for me as others .I thought it would because my treatment had worked so well first time and given me a long remission.

I realize no every Myeloma patient is different .

I go to St James in Leeds and am so pleased with the treatment advice I have received since 2012 from the many Myeloma consultants there . My advice would be to listen to the consultants if you are at a centre like me if you are at a smaller hospital and maybe there is only 1 specialist ask for a 2nd opinion to help you make your decision.

Hope this is of some help .

Best of luck

Chris .

[chris55leesParticipant]

Hi Joverson

A few texting mistakes in the above

Dbd should be DVD

Line- I realize no every Myeloma patient is different should read

I realise every Myeloma patient is different

Good luck

Chris

[yebhitheekhai01Participant]

thanks

[cjleedsParticipant]

Started DRd after third injection and Dexamethasone I think my blood sugar went up ,after Dexamethasone high I was still tired getting up in night to go to loo and I’m loosing weight .ive had my fourth treatment but dexamethasone high still in effect. I’m seeing my consultant today but I’m worried that this may leave me unsuited to this longer life extending treatment anybody had a similar issue

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