[cjleedsParticipant]

Hello Kar, I have lambda light chain myeloma diagnosed october 2023 and treatment started march 2024. I was certain that a stem cell transplant was the way to go and told my consultant that when they wanted to start treatment. More than one consultant at my clinic (Leeds St James’s) advised me that DRd was a better choice for me taking outcomes and risks as well as effective treatment into account. To be totally fair they said they would go ahead with stem cell transplant if I insisted but they advised that DRd was better for me ( I was 70 with no other serious illness ,now 71 ). So you can see why it’s such an individual choice regarding both age and myeloma type.
Now on cycle 10/11 DRd has its downsides diarrhoea (lenalidamide caused bile acid malabsorption, now effectively controlled with cholecystramine) and the well documented ups and downs of dexamethasone.
I’m so glad I followed my consultants advice about treatment and count myself fortunate to attend on of the top centres in the country.Its such an individual choice and journey so I wish you and your husband well . Keep looking on the forum some incredible people post about their own experiences on here.
Regards Colin

[cjleedsParticipant]

Much appreciated and as there is a brand they stock at over £50 a bottle no one could accuse you of pushing their stock price up
Again thank you . The best thing about this forum apart from realising you are not alone is the great tips people share about things that work for them and are often worth trying even though myeloma is such a diverse disease
Colin

[cjleedsParticipant]

Rabbit ,I would welcome any advice as to brand of CBD oil from H&B. I notice they stock different brands with a range of prices. I understand that recommending a brand in the higher price range is difficult and I personally would find it so . So no pressure if you would rather not but I would prefer take a punt on a brand which works for you as opposed to a random pick.
regards
colin

[cjleedsParticipant]

Rabbit,
That seems like something to try in my situation too, so it’s a thank you from me as well
Colin

[cjleedsParticipant]

Hello, I take 40mg of dexamethasone once a week as part of DRd treatment. I take it with breakfast 3 weeks out of 4 . My oncology clinic which administers the daratumumab injection and zometa infusion 1 week in 4 has recently moved my clinic time from mid morning (11am) to 2:30 pm. As I have to take the dexamethasone with paracetamol and an antihistamine 1-3 hours before this it has moved my dexamethasone time to post lunchtime. However the effect of the medication hasn’t changed my sleep pattern much . That evening /night is usually 2am bedtime,asleep around 3:30/4am awake 6/7am.This improves over the next couple of days to be replaced by dexamethasone down tiredness. I often fall asleep in my armchair after lunch for the next day or so.
Regards
Colin

[cjleedsParticipant]

Thank you for your reply Rabbit,
You make some interesting points. With regards to my treatment delay of four months , I didn’t really think of this as a problem at the time. I assumed that the free light chains were monitored and allowed to rise as I was feeling well and the kidney problems regarding high creatinine were only noted after monthly blood tests on two occasions ( it was after the second occasion that treatment was recommended ).I did wonder at the time if the delay was also due to the fact that DRd as a first line alternative to stem cell transplant was only given the go ahead by NICE in october 2023. Having said all that my latest free light chains are 34. To be fair to the consultant I initially raised the possibility of BAM with ,the diarrhoea was controlled to a certain degree by loperamide, and so I wimped out on pressing my conviction that it was BAM. You make an extremely valid point about learning as much about our conditions as possible and this site with its many contributors is invaluable,
kind regards
cj

[cjleedsParticipant]

Hello rabbit
Thank you for you reply my consultant at St James’s in leeds doesn’t seem unduly concerned about my weight loss I was just a little concerned because I expecting to have a weight gain with the dexamethasone . I think I should view it as a bonus I haven’t been at my current weight since my thirties and my creaky knees are certainly appreciating the reduction in load!
regards clj

[cjleedsParticipant]

Hello again everyone,
I am now coming to the end of my second cycle of DRd treatment and it’s not going too badly I don’t think . As mentioned on this forum the two most challenging aspects for me have been constipation caused by the lenalidamide I think for which I take a stool softener (I am using laxido at the moment ) which seems to help ( and eating lots of fibre such as all bran ) and the dexamethasone is definitely a challenge. My treatment day is tuesday so I find that I’m wide awake and unable to get much sleep tuesday and wednesday nights then I tend to come down and sleep a lot until saturday when things start to improve again. I’ve quickly learned to nap when i need to. I’ve lost over a stone in weight since starting treatment but other than that things are going ok I think , some backache which is manageable with paracetamol

[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

[cjleedsParticipant]

Hello Emmy ,
I was diagnosed with lambda light chain myeloma last August following a routine blood test. My situation is totally different from yourself however as I am a relatively healthy 70 year old. My lambda light chain levels were 481 and kappa 6.3 ratio 0.013. Bone marrow showed about 60% abnormal plasma cells and I was classed as an active smouldering MM. My creatinine levels since that time however have been very up and down and are now staying above normal range and my serum light chain levels are continuing to rise , now over 1800, and haemoglobin dropping slightly. It has been decided time has come for me to start first line DRd treatment ( because of the kidney problems) which I will be doing soon. I will post on here how this goes.
Sorry for the rambling reply which probably doesn’t help you very much but I wish you well. I find people on this forum are very helpful and supportive.

[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

[cjleedsParticipant]

Hello , I’m another newcomer to the site and I’m in the process of being diagnosed. I’m 70 years old and my problem was found when I had free light chains in my plasma and urine . I have just had a bone marrow biopsy this morning which was uncomfortable but not too bad . For me the most painful part was the aspiration rather than the bone sample bit. I find reading about people’s experiences with the disease is a real help in allowing me to come to terms with what the future may hold so I just wanted to introduce myself and say thank you to everyone who posts on this forum.

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