Hi Susie

Sorry to hear that you’re having problems with the Zometa. I was on Zometa for two years but the Drs stopped it 12 months ago saying that there was no benefit in carrying it on after two years.

I had the usual ` Zometa flu’ the first time I had it but after that no real problems. I did think that three or four days after each infusion…[Read more]

Hi Kay

Sorry to hear that your mum is feeling so unwell.

You don’t say what type of chemo your mum is on. There are lots of different drug combinations and dosages, so the effects can vary quite a bit from one person to another.

The best advice is always to speak to the doctors or nurses at the hospital or the Myeloma UK helpline, they are the…[Read more]

Hi Geoff

Good to hear that you are on the mend after a difficult few months. I was pretty much wheelchair bound for six months following diagnosis because the myeloma had caused spinal damage. Glad to say that my quality of life is now much improved following treatment – they say that myeloma is a marathon not a sprint so you have to keep…[Read more]

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

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…[Read more]

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…[Read more]

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…[Read more]

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.…[Read more]

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…[Read more]

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

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…[Read more]

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…[Read more]

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

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

Hello Mike

I recognise many of the side effects you describe, a bit light headed if i get up too quickly, irregular heart beat occasionally and chronic fatigue as well as skin problems which I think may be fungal infection. All of these are post stem cell transplant and probably part of the baggage which comes with Myeloma. Nothing too…[Read more]

Hi Shelagh

Sorry to hear that you and your husband are having a rough time of it at present.

I started with MM in 2013 and it was about 8 months for me post diagnosis before i met anyone to talk to who had Myeloma, and as you say it can be a lonely place to be in. I too had similar back problems, unable to move for about six months. Luckily the…[Read more]