My condolences to your family.

As many have said on here,Scott always seemed to be beating the odds,I remember him talking about SCT although kidney functions were not great.

He gave lots of people hope and this is what this site is about,hope for a cure plus watching people who seem to be full of hope and beating the odds,Scott is one of many…[Read more]

I’m so sorry to hear your news about your dad. He always sounded so positive about life and his treatment. My condolences to you and your family.
Jan W

Hi Helen

I always used to rely on my relatives for my knitwear, but unfortunately they all had to give up knitting due to arthritis in their thumbs and the weight of a garment just made the pain worse. I’ve tried to learn how to knit on many occasions over the years, but with no success.

My light chains are still going up and down, with the…[Read more]

I’ve been on multi B vitamin tablets for the last four years. Haven’t a clue whether it makes any difference. I also read the report on myeloma patients with lack of B12.

Jan

Hi Helen.

Well the Professor gave his considered opinion and SCT has been ruled out again with the same reasons as before due to the hammering my bone marrow has had due to the constant chemo. So even the my blood tests have been good they must lack in certain areas. I’ll have to get the full report from my consultant next time I see her.

I’m…[Read more]

Hi Vicki.

Just been catching up on the forum as it’s my DEX night! Though recently I’ve been managing to sleep on my Tuesday Dex nights not tonight though.

I find it strange your consultant seems to work in isolation. My consultant regularly has meetings, probably conference calls, to discuss her patients and treatment options with other local…[Read more]

Hi Susie.

Sorry I do know much about vironostat other than it’s in a new class of drugs that are being investigated and undergoing several trials.

The trouble with myeloma is it never leaves you and unless you get the top rated remission ie no detectable myeloma you will probably not return to pre myeloma fitness. The drugs we take damage our…[Read more]

Hi Val.

When I was diagnosed I was told six cycles of chemo, CDT, then SCT. Well I’m still on chemo and SCT has just been ruled out again! Oh I was diagnosed October 2011 that’s three and a half years of chemo.

Everyone’s journey with this disease is different never count on anything going to plan.

As far as I know it’s up to you where your…[Read more]

I was diagnosed with smouldering myeloma may2014 I had pains in legs arms and ribs doctor told me it was not myeloma related  had Mir scan and full body X-ray no bone damage found  I then asked for a second opinion and was sent for a pet scan on February 10th 2015 found lesions in pelvis spine and ribs start treatment tue10 March on myelomax1 t…[Read more]

Hi Helen

You certainly keep yourself busy with the wedding and now a holiday cottage, together with a house move. I’m exhausted just thinking about all of the work involved! At least the holidays should be relaxing.

That’s great news about Pomalidomide working for you, with your light chains reducing well and your neuts looking a lot…[Read more]

I was shocked to hear of your dads passing. My deepest sympathy to your family

Jean

We also have the Braun ear thermometer. My DIL brought a wand thermometer – doesn’t touch the skin – just wave it across the forehead. She said it’s brilliant

Jean

Evening Beverly, I had exactly the same reaction as you have had, it turned out to be allupurinol that was causing my problems. So I was taken off it.
Regards
Tony F

Really saddened to hear about Scott, as Jane said, his posts seemed upbeat and optimistic. I hope you can manage with the grief and that you will make the most of everything he gave you. After all, you have a life to.

All the best for the future.

Richard

Hi Helen.

I’m having a Dex morning! A new one for me. So I’m nosing around on here to see how things are progressing.

So now the wedding is out the way the move is back on. The grass doesn’t have chance to grow under your feet! Have you somewhere in mind to move to? Have you already mentioned it and my chemobrain has forgotten it? lol

A holiday…[Read more]

Hi Maureen.

The rule I was told at the beginning of my myeloma journey was that before a SCT you needed at least a 50% reduction in PPs levels before it would be considered. I suppose that applies to the other ways myeloma is measured too.

There is no “normal range” though the closer to zero the better as been stated in this tread already good…[Read more]

Hi Kells.

Just come across your post and see you’ve not had a reply yet.

In my eyes saving money on premiums by not disclosing MGUS is pointless because if you ever have to make any claim your medical history will be examined and your diagnosis of MGUS discovered and your insurance will probably be null and void so all your reduced premiums will…[Read more]

Hi Roo.

I’ve been on thalidomide and and thalidomide based chemo since October 2011 with varying side effects. Mainly tiredness. Cyclophosamide is the one that caused me most problems with nausea, lack of concentration, effecting my appetite etc.  I’ve been on full strength treatment since diagnosis so have been open to all the side…[Read more]

Hi, although it was a couple of years ago when I was on the myeloma XI trials, I felt exactly the same as you, but it did vary through the cycle, I put the blame on the treatment not the myeloma.i know it’s easier said than done but I tried to rise above it! Going walking helped!
If it’s any consolation it won’t last, the treatment bought my pp’s…[Read more]

Hi there,
I’ve just had a bout of itchy red marks like small blisters on my feet. They are an indication of Shingles in my case. As for Neuropathy on my feet, I did have that whilst on Velcade but that has all but gone now. As for the schingles, I was given anti viral tablets whilst under treatment and my consultant said if I ever get cold sores…[Read more]