[davidainsdaleParticipant]

Hi Jan

Forget to say that BBC1 on Wednesday 1 June at 9.00pm The Big C & me follows a lady in Wales who hopes a stem cell transplant will beat her disease.

Hope this helps.

David

[davidainsdaleParticipant]

Hi Jan

I am 2 years post transplant and doing well. There is lots of advice out there but I strongly recommend the info guide available from Myeloma UK, this was an invaluable source of information to me. There is also a great video clip about stem cell transplant on this website and there have been a couple of webinars about the topic which are available on Youtube.

That said, I found the single most helpful thing for me was going along to a Patient information day and speaking directly with another patient who had been through it all. There may also be a local support group nearby.

Good luck and I hope this helps.

David

[davidainsdaleParticipant]

Hi Claire

Sorry to hear that your husband has myeloma.

My story is similar to that above, it all started with a bad back and then wheel chair for six months. Now 2 years post SCT and quality of life is much improved.

Myeloma UK has lots of information available. I found that going to the patient information days really helpful, especially talking to other patients. There are lots of local support groups in the UK and you might find these a useful source of advice as well. It was 8 months before I spoke to anyone who had myeloma and just being able to compare notes with someone else is so worthwhile.

Good luck with your move to the UK. My daughter lives in York, a really nice place but busy in the summer. The sun is shining in Liverpool today here on the other side of the Pennines so I shall sign off to do some gardening.

Hope this helps.

David

[davidainsdaleParticipant]

Hi Pam

Thanks for your comments. So far as I am aware, maintenance treatment ( which I think is only available as part of a clinic trial ) is not automatically offered after SCT.

If there is a local support group near you there may be other patients who you could talk to.

From what I have seen and heard, there are pros and cons and in the end it comes down to personal choice. For me, it is nice to be drug free post SCT, apart from the over the counter medicines for the odd cough and cold!

Fatigue and lack of stamina have been the main problems in recovering from SCT.

Hope this helps.

David

[davidainsdaleParticipant]

Hi jazmax

It must be a difficult time for you. Maintenance treatment post SCT is not something that I have been offered.

It is still early days after your SCT, in fact my pp levels stayed the same after my SCT and then dropped rapidly after a few months.

Myeloma UK did a very good webinar broadcast on maintenance treatment a few months ago. You can find it by using the search engine on this site or looking on Youtube. This may address some of your queries. If not then try the Helpline.

Hope this helps.

David

[davidainsdaleParticipant]

Hi dazz

Sorry to hear that you have MM and wish you luck on your journey. You will find plenty of helpful advice here on the forum.

It is hard to answer your question without knowing more of your diagnosis since it is true what they say about myeloma, everyone is different and reacts to the treatment differently. I think it is probably fair to say that most patients do find that there quality of life is affected at some point.

Staff from Myeloma Uk are available on the helpline and are always willing to give advice. There are also the local support groups which are well worth attending if you have one near you.

Hope this helps.

David

[davidainsdaleParticipant]

Hi Val

Nothing prescribed by the medics for me post SCT.

It may be my imagination but I find Minavex helps keep some of the bugs away. You can buy it from the chemist,one spoon a day, it is usually for children!

Hope this helps.

David

[davidainsdaleParticipant]

Hi Colin

Don’t know if you have seen any of the Myeloma UK webinars but there was one on `Maintenance Treatment and Myeloma’. You can find it on this website by typing in Webinars into the search engine which will then direct you to Youtube. This may answer some of your questions. The other suggestion is to maybe speak to someone at a local support group.

Hope this helps.

David

[davidainsdaleParticipant]

Hi Susie

As Ann says, I don’t think it is automatic, just because you have MM. You need to make the case, for me lack of stamina, fatigue from the chemo and spinal damage limit my mobility, particularly towards the end of the day when I get tired. Your specialist nurse,local Macmillan centre or benefits advisor should be able to help you fill the form in and,or provide a letter of support.

Hope this helps.

David

[davidainsdaleParticipant]

Hi Susie

I’ve also noticed a trend towards Facebook, personally I prefer the MUK discussion forum for the more formal stuff, not least because it has a good search engine if you are looking for something in particular.

Glad to see Andy is still doing well.

All the best

David

[davidainsdaleParticipant]

Hi

From what I have seen on the forum, skin rashes post stem cell transplant are not uncommon. My own theory is that the bugs which are ever present start to take advantage of the body’s reduced immune system. Two years on and I still suffer periodically. It comes and goes. I find that epiderm which you can buy over the counter at the chemist does seem to have a calming effect.

Hope this helps.

David

[davidainsdaleParticipant]

Hi Val

It seems to be very easy to pick up bugs after having treatment for myeloma, presume that the immune system takes a bashing. Once you have a bug then it takes a long time to clear. People say that planes are a good place to catch these bugs and infections, particularly on long flights – don’t know if it is true or just rumour. Hope things improve soon.

David

[davidainsdaleParticipant]

Hi

I would support Jan’s advice, I had a nasty cough and cold bug over January and February which took a good few weeks to shift, nothing life threatening but has left me feeling washed out. Why take the risk of catching something when young family are likely to shake it off in a few days anyway? I think having MM and the treatment makes on more prone to catching these bugs. Also, I wish some members of the public on trains and buses would learn to use a tissue rather than sneezing and coughing over everyone else!

Hope this helps.

David

[davidainsdaleParticipant]

Hi Les

Hope all goes well with your Stem Cell Transplant. I had mine 2 years ago in Liverpool. I was out in just 16 days and looking back probably had a fairly smooth run through the treatment, up and dressed every day and managed to avoid any mouth problems. The advice on this forum to suck ice cubes or lollipops when you have the melphalan seems to work well.

I had my treatment at 60 years old and prior to diagnosis was reasonably fit and active. I was surprised how long it took me to recover from the stem cell treatment, certainly a couple of months, even now fatigue and stamina are still issues for me. It helps that you have the summer to look forward to and get and about. Just 2 degrees and heavy rain/sleet outside as i write this from the North West!

Hope this helps.

David

[davidainsdaleParticipant]

Hi Nippy

Sorry to hear that your sister has been diagnosed with MM, it can be a very difficult time at the beginning. Jan’s advice above is absolutely spot. I followed a similar path myself, diagnosed at 59 radiotherapy, chemotherapy and then stem cell transplant. Three years down the line quality of life is much improved.

I would recommend asking the helpline for some of the booklets which are relevant, they are really helpful. Also taking to other patients can be very supportive, there may be a Myeloma support group near to where you live?

They say Myeloma is a very individual disease and that it is a marathon not a sprint.

Hope this helps.

David

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