[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

[davidainsdaleParticipant]

Hi Taff

Yes it can feel like a rollcoaster at times, up one day and down the next.  Hopefully for you there will be more of the good days.
Fatigue seems to be a common side effect of the treatment.  There is plenty of advice out there on how best to manage.  Here is a link to one of Myeloma UK’s infoguides or maybe speak to one of the nurses on the info line.

Fatigue Infosheet

Hope this helps.
David S

[davidainsdaleParticipant]

Hi David

Sorry to hear that you are not well just now.  I had Melphalan as part of SCT but I suspect that the doses given outside of SCT are very different.

There is some useful information on this website under the heading of ` drug finder’.  To save you looking here is the link.

Melphalan, Prednisolone and Thalidomide (MPT) Infoguide

The nurses on the Myeloma Info line are very helpful and well informed so why not give them a ring.

Hope this helps.

 

David

[davidainsdaleParticipant]

Hi Taff

Good to hear that you have finished the CTD and have had a great response.  It can be a slog towards the end of cycle 6, but as they say no gain without pain!

For me, quality of life started to improve a lot once I had finished the CTD and the side effects of the treatment start to wear off.

Good luck and keep well.
David

[davidainsdaleParticipant]

Hi Taff

Sorry to hear that you are having a rough time at the moment.  This cold winter weather we having is probably not helping, but the snowdrops are coming out so spring and some warm sunshine are not too far away.

Hope that things start to improve once this round of treatment is finished.

I was at a talk last week given by one of our local Macmillan GPs who said that there seemed to be a lot of evidence that trying to keep fit,well and active pays dividends in improved health and well being. Not easy I know when you are not feeling well.  It seems like chicken and egg in some ways, if this makes sense.

As Simon says above, your not alone and there is plenty of help out there to provide support when things aren’t going too well.

As an aside, our local support group here in West Lancs and Sefton has got off to a good start this year.  I know that patients and carers find it helpful to come along and chat over a cuppa about how they are doing.

Hope this helps.
David

[davidainsdaleParticipant]

Hi,

Your clinical team are probably the best people to advice but in the meantime why not have a word with one of the nurses on the Myeloma UK Helpline.  They are really friendly and very knowledgeable.  There may also be something in booklet form which may be of interest.
Hope this helps.

 

David

[davidainsdaleParticipant]

Hi, I am now 4 years post diagnosis and doing well after a fairly difficult start.

There is plenty of advice available from Myeloma UK and I found that the Infoguides were a real help. I would also recommend attending one of the patient infodays or going to a support group meeting if these are going on in your area.

The nurses on the Infoline are very knowledgeable, approachable and friendly.  They are there to answer any questions about Myeloma you might have.
Hope this helps.
David

[davidainsdaleParticipant]

Hi Ian

Zometa appears to quite common as part of initial myeloma treatment. I had it for two years after which my consultant said that there was no evidence that staying on it for long had any beneficial effects.

That said, this practice does seem to vary around the country from hospital to hospital from what I have seen and heard.  Maybe it is down to individual patients.

For me, like Jan, I had the Zometa flu after the first infusion but after that had no problems at all.  I suspected that after a week or two my skin became more irritable for a couple of days but then passed.

They say that a good tip is to drink plenty of fluids before and after you have the Zometa which helps the kidneys.  May be something to check with your medical team or the nurses on the helpline. The other common piece of advice is to check with your dentist if any work is needed and get this all out of the way before you start the Zometa.

Hope this helps.
David

[davidainsdaleParticipant]

Hi Sue

Stem Cell Treatment like you in 2014 and fortunate that my quality of life is much improved.

I don’t know if I can offer much help or advice except to say that the vast range of medication we have during treatment ( I was on 40 tablets a day at one stage ) is bound to have some side effects.

I have found that skin irritation and muscle weakness to be a recurring problem but on the positive side the effects do seem to be getting less as time passes and I recover my fitness. I did have eye problems due to fluid retention in the eye ball which I think was caused by the steroids, but this quickly got better once I stopped.

It may be worth having a word with the Myeloma Helpline staff who have probably come across most of the side effects experience by patients over the years.

Hope this helps.
David

[davidainsdaleParticipant]

Hi Taff

Good to hear that you have responded well to the treatment and the myeloma is under control, just the colateral damage to sort out now.

It may help you to know that you are not alone in having mobility problems, it seems very common with myeloma unfortunately.  I was pretty much in a wheelchair for six months myself and unable to move due to spinal collapse and spinal cord compression. Glad to say that quality of life for me is much better now but it took a lot of time, effort and patience to build up the strength in my muscles and get back on my feet again.  Google maps is great for tracking progress.  50m one day, 100m the next and so on.

Macmillan have lots of usual things going on so it might be worth asking them what is available to help you above and beyond what the NHS has to offer.

Acid reflux also sounds familiar, with me it is self inflicted if I have a beer or glass of wine in the evening. I find that a glass of milk usually sorts it out, if all else fails I have a stock of Lanzoprozal which work well.

With luck, we will have some fine weather and daffodils soon.

Hope this helps.
David

[davidainsdaleParticipant]

Hi Lennie

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

It may help to have a chat with one of the nurses on the myeloma infoline.  They are very helpful and know a lot about myeloma, so will be able to give you some advice or send you some information.

Hope this helps.
David

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