[davidainsdaleParticipant]

Hi All

I thought a quick update on my treatment may be of interest.

Not too far off the finishing line now, I’m coming towards the end of Cycle 7 but have to admit that I am finding the side effects a real slog ( fatigue, bowels, neuropathy etc ). The side effects seem to vary day to day and hour by hour so difficult to plan ahead. Nothing major so hoping these will reduce once treatment finishes.

My pps continue to drop nicely, now 2.3 at the end of cycle 6 down from 18.9 at the start, so the DV-d is clearly working. My other blood counts go up and down during the cycle but are not causing any concern to the medics.

A second stem cell transplant later this year has been mentioned but I understand that there are ( financial ) restrictions on the timing of the four weekly Darzalax maintenance which may introduce added complications. Also the CASTOR trials don’t seem to mention this and it is not clear how much benefit I might gain – any views from anyone??

I’ll start a separate post about the monthly maintenance plan. I am hoping that once this starts I can return to some sort of normality and regain some of my normal fitness.

Local haematology unit has made a number of changes for COVID-19 but the usual myeloma patients seem to be continuing with their treatment plans.

Overall, I’m pleased with progress but it has been hard work.

Hope this helps.

David

[davidainsdaleParticipant]

Hi Peter

Good luck with your treatment, hope it goes well.

David

[davidainsdaleParticipant]

Hi All

Thanks Graham and Rache for your posts which are very helpful. I thought I would give a quick update now that I am near to the end of Cycle 3 of the DVd treatment regime.

My pps after two cycles have dropped from 18.6 to 5.8 which is very encouraging, and like Graham says the best Xmas present you could ask for. My whole blood counts are normal except the platlet count goes up and down each week between 200 and 50, presumably due to the Velcade.

The main issue is the fatigue which varies day to day. I do my best to keep active but sometimes it’s a bit of a struggle. No real problems otherwise except for a few which need managing like poor sleep, bowels, dry mouth, sore tummy from jabs.

Probably best summed up by the myeloma saying ` it’s a marathon, not a sprint’.

Good luck and Happy new year to everyone else on treatment.

Hope this helps.
David

[davidainsdaleParticipant]

Hi Becky

Sorry to hear that your dad is having problems, hope he gets sorted quickly and makes a full recovery.

The nurses on the Helpline are probably best placed to advise but I think the answer to your question is yes. In our local myeloma support group there a small number ( all men ) who have had similar problems.

I have just started treatment myself and have daily blood thinning injections of enoxaparin to prevent clots. So one assumes that this is something which the medics will have on their radar screen.

I honestly don’t know what the answer is but I try and do as much exercise as I feel I can cope with to keep the circulation moving.

Hope this helps
David

[davidainsdaleParticipant]

Hi Tony and All

A report in the Times Business section this weekend may be of interest. Glaxo are seeking market approval for a new drug Belantamab for myeloma patients who have already had three lines of treatment. Perhaps this is the one we have been waiting for? Here is a link:

https://www.gsk.com/en-gb/media/press-releases/gsk-announces-positive-headline-results-from-the-pivotal-dreamm-2-study-for-multiple-myeloma/

Hope this helps
David

[davidainsdaleParticipant]

Hi Tony

Sorry to hear that you have recently been diagnosed with Stage 2 myeloma, something none of us wants to hear.
Florence has already made some good points. It’s difficult to draw any conclusions from the statistics – Myeloma UK have published figures to the effect that a fifth of patients die within 60 days and that the average age of diagnosis is 71.

On the positive side, our West Lancs and Merseyside myeloma support group has two ladies who are now 22 years post diagnosis and one chap 18 years post diagnosis, with several more than 10 years on.

Age and general fitness seem to be factors in favour of a long remission.

I started my myeloma journey in 2012, aged 58 and like you have Stage 2 myeloma. First line treatment went well and expect to be starting second line later this year. Even since 2012 the number of treatment options and their efficacy has increased considerable, the hope is that it will become a chronic condition which can be kept under control.

Hope this helps.

David

[davidainsdaleParticipant]

Hi Susie

Sorry to hear that your experience at the local support group was not the best. I recognise only too well the value of being able to talk to other similarly affected.

Myeloma UK did at one time have a buddy scheme, and I think that this is still the case, which puts patients in touch with each other. It is certainly worth a call to the Helpline to see if anything can be arranged.

I thought it was only us chaps who qualified for the grumpy club!

Hope this helps
David

[davidainsdaleParticipant]

Hi Susie

Sorry to hear that you are feeling down just now, the whole experience can be quite traumatic especially if you are not getting support from the professionals.

So just wondering if you had considered going to one of support group meetings. I know that they are not everyone’s cup of tea, but I run the West Lancs and Merseyside myeloma support group. I can honestly say that those who come along to our meetings do find it valuable to meet others similarly affected and to swap stories in an informal atmosphere as well as trying to have some fun. Like you, it was 10 months after being diagnosed before I spoke to anyone with myeloma, so it was quite a lonely journey to start with.

Our group meets once a month but members don’t have to go to every meeting. If there aren’t any myeloma specific groups near you then there will probably be some haematology groups run by Mcmillan or one of the other blood cancer charities. Myeloma UK have a full list on their website.
Hope this helps.

David

[davidainsdaleParticipant]

Hi Rosary

Sorry to hear that you hav ejust been diagnosed with myeloma, but welcome to the club which no one wants to belong to.

I had a similar starting point to you, ie male aged 59, radiotherapy and chemo – that was six years ago in 2013.

There is plenty of advice and help out there, particularly from Myeloma UK. I would also recommend going to one of the patient Infodays and a local support group if there is one in your area.

My experience so far probably best summed up by `it’s a marathon not a sprint’.
Good luck on your myeloma journey. hope this helps.

David

[davidainsdaleParticipant]

Hi Lynne

Sorry to hear that your husband has myeloma and is suffering just now with the treatment.

The nurses on the Myeloma UK helpline are a great source of advice and I would certainly advise speaking to them. If it is anything to do with myeloma, they have probably seen or heard about it before, if not they will find out!

I was diagnosed in 2013 ( age 59) and had the CTD initial treatment which included cyclophosphamide.( 10 lots of 50mg once a week). I felt pretty rotten during the treatment, weak muscles- fluid retention – lethargy, but it is hard to pin down what causes what. I can say though that once the treatment stopped I did see a fairly quick improvement, certainly within a couple of weeks. I tried and keep as active as possible even if it was struggling to walk short distances.

I also think you have to be careful trying to draw comparisons because the dosages and timings can vary.
Hope this helps and your husband improves soon. Good luck with the stem cell transplant.

David

[davidainsdaleParticipant]

Hi, it’d David replying to your test email.

[davidainsdaleParticipant]

Hi Stuart
David here

[davidainsdaleParticipant]

Hi Frances

There was an article in the Times newspaper on 4 January this year about the possibility of Celgene being taken over by Bristol Meyers Squibb. They mentioned Revlimid and said that the likely expiry date of the patent was 2022. I think the staff in Myeloma UK keep in touch with these developments and are probably best placed to know if there are going to be any implications which affect us patients.

Hope this helps

David

[davidainsdaleParticipant]

Hi Bubblesqueak and Lyn

Thanks so much for your replies.

It’s good to hear that this second line treatment combination is receiving favourable comments and has a fan club already!

Hope that your paraprotein levels continue to fall.

David

[davidainsdaleParticipant]

Hi Les and Lynn

Just wondering how you were getting on with the Darzalax + Velcade + Dexi combination?

My pps have risen to 13.4 and at my consultant appointment this week he says he wants to get me started on this second line treatment. So something to look forward to over the summer?

Any comments welcome!
David

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