[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

[davidainsdaleParticipant]

Hi Sean

Sorry to hear that your father has myeloma, it seems that you have your hands full just now.

Here in the West Lancs and Merseyside area there are plenty of voluntary and professional organisations who could help and give advice, hopefully the same in your area.

I suggest that you contact your nearest Macmillan centre who will know all the right people and who may be able to help. Your Cancer Specialist Nurse at the hospital should also be able to offer advice.

Hope this helps

David

[davidainsdaleParticipant]

Hi Malcolm

Sorry to hear that your wife has been diagnosed with myeloma, it’s something none of us want to hear, and hope that she responds well to treatment.

I can’t off any meaningful response to your questions I am afraid except to say that regarding your first point about mouth problems. If you have not already done so, then I suggest speaking to Ellen or one of the nurses on the Myeloma Helpline. They are very helpful and have probably come across most of the side effects and would be a good source of advice.

Hope this helps
David

[davidainsdaleParticipant]

Hi Cazzie

Glad to hear that you have recently completed your stem cell transplant and feel well.

I had mine in February 2014 ( age 59) but like you my pp levels stayed elevated for a few months and then dropped to below detection level for about 5 years before returning and rising slowly, now back up to 10.

I hope that you find yours drop further as well.

Hope this helps.
David

[davidainsdaleParticipant]

Hi Les

Great to hear that you have found a treatment that is working, it does seem a bit pot luck which ones work and which don’t.

Sorry I can’t offer any response to your question, but I was wondering if the Darzalex ( Daratumumab) you were having was part of the triplet combination of Darzalex, Velcade and Dexamethasone which was recently mentioned by Myeloma UK on this website as having been approved by NICE – and also how long is each cycle?

David

[davidainsdaleParticipant]

Hi Amme

Your question is one that I have been thinking about myself having relapsed after my first SCT in 2014 but not yet on further treatment.

I know of several patients who have successfully had a second SCT, and one even a third. Clearly your clinical team is in the best place to advise on your individual circumstances but it seems to be that age and general health, apart from myeloma, are key factors to take into account.

In our area of Merseyside there are agencies which could provide short term support to a family during hopsital treatment, this may be something you could explore in your area – Macmillan might be a good starting point.
Hope this helps.

David

[davidainsdaleParticipant]

Hi Francis

My story is similar to Rebecca’s. Symptoms started to appear late 2012, bad back pain, diagnosed with IgA myeloma and pps of 55 three months later, then radiotherapy, CTD followed by a stem cell transplant early 2014. I lost 4 inches in height due to spinal compression and had a fairly torrid 18 months. That said, I am now over 6 years down the line and have a fairly good quality of life all things considered, but have to be sensible in what I due, fatigue is probably the biggest issue for me.I had to retire from work earlier than I would have liked but now have time for holidays and endless projects in the house. pps are creeping back up slowly so further treatment not too far off.

I would certainly recommed going to one of Myeloma UK’s patient infodays. These are very good as are the local support groups where you can meet and chat with others similarly affected. I am based in the North West near Liverpool and we have a good range of support servcies here including things like Macmillan.

Even since I was first diagnosed, there are lots of new treatments coming out so the outlook is optimistic. Myeloma UK do a great job on our behalf lobbying the powers that be to get these new drugs available for our clinicians.

As they say, it’s a marathon not a sprint.

Hope this helps
David

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