[susieParticipant]

Hello Shytalk

Please don’t feel you are any different for feeling sad and scared, I’m sure we all feel that way at the beginning of this M M journey. I remember at the start of my treatment I was told by my consultant “most people sail through this treatment with no problems” So when I started treatment and felt so poorly I felt something was wrong. Like yourself I too live alone and all I wanted to do was talk to others who were further down the journey. This site was a real saver and I’m sure you will find knowledge and comfort here. Don’t hesitate to contact the MUK nurses too, they’re fantastic and so helpful.

I do wish you the best. Where are you being treated ? Find out if there is a support group near you.
Try to be positive, this is a disease that can be controlled.

Best wishes

susie

[susieParticipant]

Hi Mike

Thanks for your reply. Very reassuring that side effects appear limited for you. Maybe Velcade wont be so bad.

What were your PP’s when you started treatment. What dose of Dex do you have.

I hope it continues to knock your M M on the head and you’re soon into a good remission.

Best wishes

susie

[susieParticipant]

Hi Andy

Once again you put things into perspective for me and I thank you very much. I guess I was having one of those sorry for myself days. It’s just I have one doctor (consultant) telling me he wont start treatment until my PP’s reach 30 plus unless I develop symptoms. And another (specialist registrar) telling me they don’t wait for symptoms but start treatment just on rising PP’s, it’s now at 26. So I don’t know who to believe or trust. My PP’s ran at around 30 for several years before M M became active.

I’ve just read your other post. It seems you are having a good time having plenty of holiday breaks. I hope you keep well and enjoy your times away.

Take care & best wishes

susie

[susieParticipant]

Hi Andy

Nice to hear from you. How are you doing, well I hope.

I don’t claim any of the mentioned benefits. I struggle on with this back which may be daft, but that’s me.

Best wishes

susie

[susieParticipant]

Thank you all for your replies.

I hate to think I am approaching a time when I need a blue badge, Its like accepting I’m getting past it. I’ll see how it goes. People seeing me walk would most probably not see much wrong, but I’m in agony when I walk any distance, so much so I just have to sit for a while. I will do it via Macmillian.

best wishes

susie

[susieParticipant]

Hi Andy

Good to hear from you. It seems a lot that used to post here are now on facebook, which I am not.

Amazing, you on your 30th cycle, and seems you’re doing well and I’m so pleased for you.

Have good holidays

Best wishes

susie

[susieParticipant]

Hello jaylo

Welcome to the forum.

Try not to worry too much. You can be in the MGUS phase for years and some never become active.
I was MGUS for at least 4 years, with a paraprotein of around 30 and a bone marrow of less than 5%. It wasn’t till it went up significantly with a bone marrow above 10% that I was diagnosed as Myeloma. During the MGUS phase I was monitored with blood test every 3 months.

Hope this helps you a little. Ask your GP for a haematology referral if you’re very worried.

Best wishes susie

[susieParticipant]

Hello Sara

Yes Wycombe General in High Wycombe, where I’m being treated. Stoke Manediville Hosp as well. Is it yourself that needs treatment ?

Best wishes

susie

[susieParticipant]

Hello Sara

I was on the Myeloma X1 trial. Randomized to Revlimid arm. Not on treatment now but it worked very well and brought my paraprotein down really fast. I’m in Bucks, Wycombe actually. If I can be of any help feel free.

Best wishes

susie

[susieParticipant]

Hello Bridget

Sorry you’ve had to join us here. Try to only use this site for info, or Myeloma Beacon (an American one)

I too live on my own which made going through treatment very tough. Thankfully I had good support from close family and friends.

If you would like to put your email address on here, I’m quite happy to email you through your treatment. I know how much I wanted to talk to other Myeloma sufferers at the start of my treatment.

Best wishes

susie

[susieParticipant]

Thanks for that Angela. I’m going to phone my consultants secretary next week to ask for the letters. I’ve done this several times in the past and spoken to consultant. I get sent just the one. Strange thing is, when I was being monitored for MGUS I never had to ask yet always got a copy.
Maybe they’re cost saving on stamps. !!!

[susieParticipant]

Hi suenev.

I was on Myeloma X1 trial and was randomized to the same as you. I too had side effects, tho no rashes. I had the severe diarrhoea, visual problems, leg muscle cramps, breathlessness, and some others too. All I can say as the cycles went on I became more able to cope with these problems. They had to stop the cyclophosphamide in the end as it seemed to make me faint, and in the early cycles the drugs made me feel very ill.

It all was worth it though as it brought my PP’s down from 63 to undetectable. So stick at it. Revlamid is a brilliant drug for MM. It will all be worth it in the end.

Good luck to you

Best wishes

susie

[susieParticipant]

Hi Andy

I’m so pleased you are improving so well. Give the memories time I’m sure they will fade. Good luck with the intensive physio.

Best wishes

Susie

[susieParticipant]

I find it hard to believe that medical professionals and patient reps (who I understand are on the deciding panel) took Rev & Pom off the list. They are proven drugs with lower side effects than the older CHEAPER drugs. I believe that because they are so effective we would live longer and therefore cost greater amount of money in the long run. To show my point, at the same time a drug that gives pancreatic cancer patients 2 or 3 extra precious months was made available.

We just have to hope that NICE will, at least put Pom on their list.

Best wishes to all

susie

[susieParticipant]

It is brilliant M UK are fighting our corner. Don’t know what we would do without them. However, I doubt this government will take any notice at all so I won’t hold my breath.

[Author]

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