Thanks everyone.

Well cycle 21 is underway and I’m all Dexed up. Tablet 1 of my 21 Pomalidomide tablets has been washed down not with beer I hasten to add but water. I’ll raise a beer and wish good luck to cycle 21 on Friday. We’ve got a busy day Friday Steph and I we’re lunching with Ian and Maureen Sinclair, from this forum, and then Friday…[Read more]

Hi Liz.

It’s my Dex night so I sometimes come around here to check how everyone is getting on. I used to be around more often but I found the forum website a bit difficult and slow after it got “updated” though it’s behaving itself tonight.

How is Kev getting on? Did he have the second round of DTpace?

You mentioned Kev’s neutrophils being 0.6…[Read more]

Hi Vicki &Colin.

Congratulations to you both. I hope you both had a fantastic day.

Wishing you plenty more days together that are filled love and joy.

Every day is a gift.

Lots of love to you both Andy xx

Hi Helen

Belgium was brilliant. The weather was great, the beer was great, and the natives were friendly.  I’ve been going regularly since 2002 initially it was with my running club mates. We’d do a race the first day we were there and then spend the rest of the time rehydrating lol. Must of been around a dozen times now. No more trips planned…[Read more]

Hi Liz.

I was tried with DTpace in 2012. After five days in hospital hooked up to all the infusions and the constant beeping I was later given a BMB which showed that most of my bone marrow had been wiped out though not the myeloma so I didn’t get a second cycle. It seems DTpace is like marmite it either works well or doesn’t work at all. There…[Read more]

Hi Vicki.

When nothing was working for me I was tried with DT-pace. It meant a five day stay in hospital whilst I was infused with a concoction of drugs. I think I had five drips going into me 24/7 after the first cycle, usually you have two or three, my bone marrow was nearly wiped out but the myeloma was still hanging around! So that was the…[Read more]

Hi Vicki.

When nothing was working for me I was tried with DT-pace. It meant a five day stay in hospital whilst I was infused with a concoction of drugs. I think I had five drips going into me 24/7 after the first cycle, usually you have two or three, my bone marrow was nearly wiped out but the myelobeen ma was still hanging around! So that was…[Read more]

Hi Vicki.

Sorry to read about Colin’s woes. When I have my regular stays in hospital at the beginning of every year, it seems that way anyway, with high temperatures and high infection markers, CRP I think, they almost never discover the cause. You can also have infections without a high temperature – something I learnt recently.

As you may know…[Read more]

Hi all.

I can relate to the tiredness sometimes I struggle to get out of the bed. My best part of the day for doing things is before 2pm after that I just can’t be bothered! Sometimes have a nap in front of the TV at teatime but fortunately I’ve never needed to have a proper sleep in bed or a duvet day yet.

Every day is a gift.

Andy xx

Hi Kaz.

The first few weeks of most treatments are hard as the body copes with the poisoning it’s undertaking. If it persists or gets too much for your mum the medics will reduce the dosage of the drugs. The big thing to balance is quality of life over treatment especially in the elderly. That applies to your mum too Sarah.

Every day is a gift.

Andy xx

Hi Helen.

I started cycle 20 yesterday. Get my definitive update on how I’m doing on the 14th July. Had a few little problems colds etc. for some reason my catheter has started to block regularly after three years of no problems.

Funnily (not funny really) enough I had just noticed I was getting headaches the past week! They’re not bad just a…[Read more]

Hi Helen.

I was great to see you at the info day and have a catch up. I think the info days are brilliant and I think everyone, who’s able, should at least attend one. The information and advice is invaluable in my opinion.

It sounds very peaceful at your holiday home no modern technology to disturb the peace and quiet well until the diy tools…[Read more]

Hi Helen.

Sorry to read that an Allo has been ruled out for you too. We need as many options as possible and it’s always worrying when one is ruled out. The most important thing is that Pomalidomide is working and your feeling well.

Hi Vicki.

What was the reason given for not offering Colin a second SCT? Was it due the length of the…[Read more]

Hi Jill.

Glad to hear your mum seems to be tolerating Pomalidomide. I hope her blood tests come back showing it’s working. I found it had a quick effect on my PPs. Dex is the devil drug in the battle against myeloma.

Every day is a gift.

Andy xx

Hiya Mavis.

We had a great time in Greece. I had a problem with my back/hip the last couple of days and found it very painful. It was worrying with a the usual fears going through my head. I had my regular blood test and drug pick up appointment when we got back and got my back checked out whilst I was there. Fortunately it turned out to be…[Read more]

Hi Stanley,

I too have found my hangovers have diminished somewhat.

I was told at a consult with Prof. Jackson when I went to see him in 2012 when all my treatments till then hadn’t worked and auto and allo sct’s had been ruled out to go out and enjoy life as much as I can. We’ve followed his advice . In our position it’s do it now because you…[Read more]

Hi all. weekly Dex

Me inspirational now there’s a first 😇

Well cycle 18 had a little sting in it’s tail. Had quite bad leg cramps last night for about an hour. Strange place too on my shin. I get cramps quite regularly at the end of cycles have done since I started Revilimid in 2012 and has continued with Pomalidimide. Guess I’m not drinking…[Read more]

Hi Dawn,

It can be daunting especially when you’re just setting out on the myeloma journey. Every blood test is approached with trepidation. It does get easier I don’t even ask about my results anymore because I know if I have a problem they will call me as they did my last test with my phosphate being low.

Hopefully CDT will do the trick for…[Read more]