[davidainsdaleParticipant]

Hi Taff

Sorry to hear that you are having problems at the moment. Sounds like you are having a bit of a rough time of it.

Hope they can sort you out soon and quickly get you back on the road to recovery.

All the best

David S

[davidainsdaleParticipant]

Hi Bob

Sorry to hear that you have been diagnosed with myeloma and are having bone problems which seems to be quite a common complication with myeloma.

I would certainly recommend speaking to one of the nurses on the Helpline. They are very knowledgeable and friendly and it is their job to help patients and carers affected by myeloma.  I would also suggest contacting one of the local support groups if there is one in your area. It is always good to speak to someone else with first hand experience and who may be being treated at the same clinic as yourself.

Hope this helps

David

[davidainsdaleParticipant]

Hi

Glad to hear that things are starting to improve.

There may be other people you can ask for help beyond the medical team at the hospital. Your local Macmillan Centre may be able to offer assistance and there are plenty of Myeloma patient support groups around the country , so hopefully one will be nearby, or there are the Patient Infoday conferences run by Myeloma UK

I personally found it really helpful talking to other myeloma patients and swopping notes.

Regarding the dexamethasone ( and other drugs ) it is not so easy to compare one person’s experience with someone elses.  I recall being in clinic and spoke to a chap who said that he could climb Everest after taking the dexi tablets,I said that I felt washed out. Only later did I find out he was taking 10 a week and I was on 80!

Hope this helps.

David S

[davidainsdaleParticipant]

Hi

Sorry to hear that your husband has myeloma and is finding the treatment difficult to cope with. It must be very hard on you both.

They say that myeloma is very individual and everyone is different. I didn’t have too many problems myself with the various types of treatment ( CTD) but there is no harm in asking for a second opinion – I don’t think this will offend anyone or speaking to one of the nurses on the Myeloma UK Helpline who are very knowledgeable.  Chances are that they will have come across someone else taking the same combination of anti-depressants and myeloma drugs.

Hope this helps.

David S

[davidainsdaleParticipant]

Hi Brian

Presume that you have investigated the costs of going privately. I may be wrong, but I seem to recall seeing somewhere that the cost of Revlimid was £64 per tablet.

Hope this helps.

David

[davidainsdaleParticipant]

Hi Taff

Sorry to hear that you have had a rough time of it recently.

I had radiotherapy on my back 4 years ago, no real problems with it I have to say except for the short term suntan and the ever present fatigue. It seemed to do the job of dealing with the plasmacytoma in my spine and the accompanying back pain.

Hope you have a speedy recovery.

All the best

David

[davidainsdaleParticipant]

Hi Beth

Sorry to hear about your father’s diagnosis of myeloma. Hope you are coping.

There’s lots of information availbable from Myeloma UK.  I would also suggest speaking to one of the nurses on the helpline if you have any questions, or attend one of the Infodays or make contact with a local myeloma support group.

I agree with everything Greg says above and how difficult it can be when myeloma first raises it’s head.  As a patient myself I was first diagnosed in 2013 and had a bad time to start with but quality of life is now much improved. They say that it is a very individual disease so it is sometimes hard to compare one person’s experience with another. On the positive side there are lots of treatment options available and new drugs on the horizon. They also say that having a myeloma is a marathon not a sprint.

Hope this helps.

David

[davidainsdaleParticipant]

Hi Nippy

Your best speaking to the nurses on the Myeloma UK helpline, they are the experts in this sort of thing or your local healthcare team.

They say that myeloma is very individual and I am sure that you can find all sorts of posts on various website with lots of people have different pps at various times. I am not an expert, the numbers can go up and down but what seems to matter most is the overall trend ie how fast it is changing and overall health.

Hope this helps

David

[davidainsdaleParticipant]

Hi Lynne

I had the same side effects usually known as ` zometa flu’ the first time I had the infusion but it quickly went away and not had any real problems with zometa since then for the next two years, having now completed treatment.

They say that the best advice is to drink plenty before and after the infusion, other than that I always thought that my skin became more sensitive a week afterwards for a couple of days, but it may have been coincidence.

Hope this helps.

David S

[davidainsdaleParticipant]

Hi Ian

Sorry to hear that you haven’t had any luck yet with treatment options, it does seem to be hit and miss, what works and what doesn’t.  This seems to be the nature of myeloma.

I don’t have any direct experience myself of the drugs you mention, but wish you luck with your treatment.

Have you tried the nurses on the Helpline, they are usually pretty up date with all these new treatments?

All the best

David S

[davidainsdaleParticipant]

Hi Taff

Sorry to here that you are suffering, it sounds like a real roller coaster up one day and down the next.

It is often difficult to know if these periods of aches and pains are due to the myeloma, the side effects of treatment, old age, normal ailments that everyone catches or in my case self inflicted from too  much DIY.

I hope they can sort you out quickly and that good health returns.

All the best.
David S

[davidainsdaleParticipant]

Hi Taff

Good to hear that you have finished treatment.  I think that all the travelling and hanging around for appointments is pretty tiring without having to cope with myeloma.  Hope that you now have a good long period without further treatment.

I certainly felt tired for quite a while due to the chemo and radiotherapy but life gradually does improve but I found that I had to work hard to keep active and eat well.

Coincidentally, I also went to a wedding just 3 months after my stem cell transplant in 2014. This was my daughter and we now have a baby granddaughter just 5 months old.

Hope this helps

David S

[davidainsdaleParticipant]

Hello Peter

I am a physicist also ( wonder if there is any connection ) and have been through a similar process of thinking about levels of accuracy, calibration and limits of detection for the measurement of paraprotein levels.  It does make me wonder when results are sometimes quoted to two decimal places and patients get worried if it has gone up by 0.01 or 0.02 – any thoughts?

I am aware that in our area bloods are from time to time sent to different labs so this must inevitably introduce a degree of bias and uncertainty.

The best advice may be to leave it to the medical experts to interpret which after all is their job!

Hope this helps.
David S

 

[davidainsdaleParticipant]

Hi Taff

Hope the radiotherapy goes OK for you.  I had it on my spine. Apart from all the travelling and hanging around in hospital which you have to accept as part of the job, it went well.  Ended up with a nice square shape sun tan for a few weeks on my back, but this soon faded. I seem to recall that calomine lotion held to ease the itching.

Good luck then with the next round of treatment.

David S

[davidainsdaleParticipant]

Hi Viv

Sorry to hear that you may have myeloma.

There is plenty of useful information on this website, and from the nurses on the helpline.  They say that myeloma is a very individual disease so it can often be difficult to find out how it might affect each of us as individuals.

There are a number of patient info days around the country which are well worth attending, there are also local support groups which can offer a friendly ear.

I was diagnosed in 2013 and was fairly poorly at the time.  Pleased to say that the treatment has been successful and quality of life has much improved. The sun is shining today on Merseyside so what more can we ask for.
Hope this helps.

 

David S

[Author]

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