Vicki, I am so so sorry to read your post, as Helen said I think that we all dread hearing what you have both been told. I truly hope that you can get Colin home to familiar surroundings. My thoughts and prayers to you both.
Regards
Tony F

Hiya Maureen, I was really pleased for Lawrie, he really wanted to do something for Myeloma, he did well.
How are you guys doing? I don’t get onto the forum too much seem to be very busy, we restarted a support group in Leicester at the beginning of the year, it seems to be taking up lots of our time.
As for me, I had my SCT just under 30 months…[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 Susie,

I find I feel generally unwell after the Zometa infusion for a few days and it also upsets my digestive tract. This last cycle the Nurse let it run through in five minutes and two weeks later I am still not right. Makes me wonder if it is worth it?
Cheers

Karen

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 robbojnn,

I like you have been having endless problems with my teeth and gums since my sct, though you sound to have worse, I know I am on my way, they get worse by the day. I too get a bit of esa, but be careful what box you tick, I ticked the box (it is very confusing), my dentist gave me a deep cllean and waivered (sp) the cost (approx…[Read more]

Hi All,
Just about to start 6th cycle of VTD and have tolerated treatment reasonably well although the side effects create their own challenges. I have had a good response and have been referred for consideration for a SCT.
So next big hurdle we have to face is the decision on next steps for treatment. Other people posting on the forum seem to…[Read more]

Hi Tony,
Sorry bit late replying, but just on a catch up. Reading your post really took me back to the shock of diagnosis of something I had never heard of, at first I thought skin cancer!!
Looking at the date you posted, things may have moved along, so I will finish.
Wishing your wife and your family the very best, at the worst of times. This…[Read more]

Hi all,

Wow Dorothy, 11 years 😀! Good luck for the 25th. Are they your own stems? Have they been in storage? Hope I am not being too nosey, just that I have some in storage for my next SCT, at my next relapse. Best wishes.

Just off to pile some coconut oil on, I definitely think there is some sort of connection with the MM and nail.

Regards to…[Read more]

Hi Andy,

Well jel!1

Enjoy your hols, and have a beer or 2 for me (hic)

Cheers

Karen 🙂

David,

Glad to be of help, I agree, it really does help discussing with other MM sufferers.

I often wonder that, was it because it was not as bad as first thought, or there was not enough benefit to be gained to make it worth it. I am putting it on my list of questions for my consultant, she will have had a report off him, I see her next…[Read more]

ps, sorry David, I sent without checking spelling etc!

Karen

Hi David,

Thanks for your reply.

About my Vertbroplasty, it went well, though the surgeon/consultant, said it was a challenge! I admit to being very nervous, but I was knocked out, thankfully as lying on my tummy was very uncomfatable. I came round bout 3 hours later, they gave me lunch and painkillers, though I do not remember any pain. I had…[Read more]