Hi Andy

Just read how low your pps are…..that’s great isn’t it. Sorry to hear about your back troubles. Keep a close eye on that eh…..Colin and I had stepped outside the mm bubble for a while but it seems his light chains have risen from 110 to 220 so we were told to start mentally preparing! Here we go again!

I so hope your drugs are…[Read more]

Hi Sharon

My partner Colin was diagnosed with mm in October 2011 with a transplant in November 2012. He has been in remission until June 2014 where his lights chains appear on the increase……we are hoping its a blip.

Having read your posts you do have a really complicated condition but do remain positive. Hard but it’s the only way…..can’t…[Read more]

Hi all

Thanks very much for your encouragement. Colin’s light chains started at 31000 so I don’t suppose they would let it go that far! We are still marvelled by the fact that he didn’t have any kidney damage so if there is any luck at all in this we were lucky then!

I’m really heartened to hear of the potential for a blip. Ellen the nurse is…[Read more]

Hi Vicki

I know it’s really worrying and stressful when you see light chain numbers increasing. However, hopefully it’s just a blip due to Colin’s recent virus on his holiday. My light chains usually increase by 200 following a cold virus, but six weeks later they drop again sometimes back to their original number and sometimes just slightly…[Read more]

Thank you all. All of your posts are very supporting. They in turn have made me encouraged and laugh…..I too must get my big girls pants on! I am not sure now whether Colin’s figures have been on the rise twice in a row or now. The comparison figure we got was something like 110 rising to 220. I’m really hoping it was as a result of Colin having…[Read more]

Hi,

Like others, I remember it well losing my taste during CDT and it took about three months after chemotherapy before my taste buds eventually returned to their usual levels.

My mother suffered from permanent loss of sense of smell and taste after a severe cold for over twenty years! She tried various remedies, joined discussion forums and…[Read more]

Hello Keith
Just caught up with this thread. Well done you. Glad to hear you are doing well post sct. The appetite took a long while for Colin. He has since started to eat normally and put on weight. He still gets tired on and off but he’s done well so far.

Hope all going well for you Tom?

Vicki and Colin x

Mike

Just wanted to say thanks for the post. My partner Colin was diagnosed in 2011, had sct in November 2012 and has been in complete remission ever since. But I feel nervy as time goes on, as we were told the average remission is 18 months…..it’s always good to hear of someone who gets a long remission. Long may it continue for you. It’s…[Read more]

Hi Susan

Just wanted to say I hope your results are good. As Mavis said your pps are low. Our consultant doesn’t say exactly what the results are just that they are ok, long may that continue!, just keep going and if there are things you believe in, carry on 🙂

Vick and Colin xx

Ali, hi, just caught up with this post! What a bugger I can’t believe this. Why can’t this mm just stay out of our lives, I’ve had one of those days when I’m having a downer on it…..Colin’s fine but I’m having a what if time. As regards your mum I don’t know what a plasmacytoma is….is that the same as when Colin had a fractured vertebrae at…[Read more]

Hi Helen, and all,

Sorry not tuned in for a while. Been trying to have a bit of normal life…..I thought not tuning in would make the myeloma bubble disappear but it’s always there in the background. Helen I’m so sorry to read that you have relapsed again. This blinking disease has no respect for anyone or anything. I keep reading about…[Read more]

Hi Lois

I think it’s a great idea about providing a book with hints and tips on living with myeloma. I don’t know how you are going to organise so many different comments from all of us, but perhaps you might consider placing the suggestions under various headings such as coping with myeloma, first line treatment, stem cell transplants,…[Read more]

Hi Helen

I think you have coped so well continuing to work whilst going through a second round of treatment, especially with the various side effects which you have suffered. It must be so difficult balancing your work, family and myeloma treatment. Hopefully occupational health will come up with a good retirement package for you to consider…[Read more]

Hi Helen

I’m really sorry to read that you have relapsed. Have your light chains jumped considerably, or are they slowly climbing upwards? You must be so worried and anxious about starting another treatment. It’s such a shame that you couldn’t have a longer period of remission for your body to recover before you start more drugs. Do you think…[Read more]

David well done you! That’s great news, your positive attitude is definitely the extra boost that follows the drugs. I truly believe the success stories are the inspiration we all need to keep going …..perhaps also a little vodka? 🙂

Vicki and Colin xx

Hi Andrea

Just wishing you all the best with your treatment , positive thought is so important, hard to do but keeps your chin up. Hope all goes well for you

Vicki and Colin xx

Oh Andy,
Sorry to hear you are going through the mill a bit. This myeloma is such a bugger…..affecting the blood is one thing but when it affects the bones ic completely another and that’s the real low baller of this damn disease. Hope things are starting to improve a but now. How come they didn’t spot the collapse coming?

Hope stephs ok too…[Read more]

Hey Tom,

Just picked up on the thread, glad you are doing well and feeling ok, there is no doubt about it, you are an inspiration. I will never forget the support that you gave Colin and I when we joined the site and continue to do, for us and all of the fellow cyber friends. Any idea when the next sct is? I might have missed it because I still…[Read more]

Hi all

Jus to chip in on the travel insurance. We insured with nowicantravel. They were great, very sensitive with the questioning and covered the myeloma! We have been back a week now, following two weeks in mauritius. I felt secure as we had good cover for us both! That said I can definitely confirm take the thermometer and antibiotics when…[Read more]