[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

[davidainsdaleParticipant]

Hi Paul

Sorry to hear about your diagnosis, hope that you are coming to terms with what has happened.

There is lots of useful information available from Myeloma UK either as booklets or downloads.  I found them very helpful.  I would also encourage you to use the Helpline, the staff are fantastic and it is their job to help patients like us – no question is too small.  If you are well enough I would also suggest going to one of the local patient information days and making contact with one of the local myeloma support groups.

Myself, I was diagnosed at the start of 2013 with a bad back which got progressively worst to the point I couldn’t move. Radiotherapy, chemo and stem cells followed and pleased to say that quality of life is much better for me now – most problems are self inflicted doing too much DIY!

They say that having myeloma is a marathon not a sprint.

All the best for 2017.
David

[davidainsdaleParticipant]

Hi Chris, sorry to hear that you might be back on treatment.

There seems to be plenty of positive news coming out on the drugs front which gives hope for the future.

There is a MUK Infoguide series on Velcade and myeloma – this might be a good starting point for you and probably answers some of the questions in your post.
Seasons Greetings and hope this helps.
David

[davidainsdaleParticipant]

Hi Neil

I would suggest having a look to see if there are any local myeloma support groups near to where you live.

There are now over 90 around the country so hope you fill find one suitable.  These provide an excellent opportunity to meet and talk to others in a similar position.  In the absence of a myeloma specific group there are plenty of haematology and macmillan support groups which may be able to help as well.  From a personal perspective as a patient I find these groups invaluable.

 

There are also regular patient information days held around the country which are great events to go to.  If there isn’t one close by there is always the option of combining this with a short break?

They say that having myeloma is like being in a marathon, not a sprint , so you have to keep going!

Hope this helps.
David

[davidainsdaleParticipant]

Good to hear from you. You are a hero. As if myeloma wasn’t enough to cope with…….

 

David S

[davidainsdaleParticipant]

Hi Nihal

There is a good information guide in the publications section here on this website which you might find helpful.  Here is the link https://www.myeloma.org.uk/wp-content/uploads/2013/09/Myeloma-UK-Serum-Free-Light-Chain-Infoguide.pdf

If you need a hard copy then I am sure the Helpline will be able to arrange this.

David

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