[susieParticipant]

Hello Helen

Gosh you have been through it. I know what you mean about getting really uptight before clinic/treatment appointments. It almost makes me ill, yet the clinicians etc never appear to appreciate how we feel do they. I’ve also got quite uptight since it was announced by the CDF that they are dropping 2 of our drugs.

My PP’s were 14 on my appointment last week so they don’t seem as though its going to plateau. I was monitored for MGUS for about 3 years when my PP’s averaged 30, and my consultant said its possible the PP’s will plateau at that figure. He also said he wouldn’t look to treating until I got to 40, (diagnosis number was 63) unless I had symptoms. Personally I think 40 is rather high to wait but then I am not the doctor. He said my next treatment will be Velcade once a week. I certainly don’t look forward to that. As you say a 3 hr visit for a 5 minute injection

Take Care

Love and best wishes

susie

[susieParticipant]

Hello Andy

How lovely to have you back with us. I know how ill you have been, so give yourself time and your strength will improve.

I have always remembered the help and advice you gave me at the start of my MM journey.

Love and Best Wishes

susie

[susieParticipant]

Hi Karen

Thanks so much. I have clinic appt next week so will find out what my PP’s are doing.

Unfortunately I’m not entirely happy with my consultant etc so I may ask for referral to another hospital. They have failed to give me advise over things and inform me of some changes on the trial I’m on.

I do wish you a speedy recovery from your SCT, and that it gives you a very very long remission.

Best Wishes

susie

[susieParticipant]

Come on everyone. Do sign Rebecca’s petition on 38 Degrees. We need to all band together to keep this in the forefront and not let people forget, otherwise it will be forgotten and we’ll never get these drugs back.

[susieParticipant]

Hi Rebecca
I’ve signed that. What about putting it on change.org as well. I feel we need to bring this drug scandel to the forefront. It’s all cost of course, but when you see NICE has just approved a drug for pancreatic cancer which will give those patients 2 extra precious months yet they deny blood cancer patients proven effective drugs. Why because it actually must work out cheaper.
Susie

[susieParticipant]

Dear Andy.

Do get well soon. You have been such a help and support to a lot of us. You deserve the best.

Lots of Love

susie

[susieParticipant]

Well I have already sent emails to certain politicians. I don’t expect any response, I’m just a tiny minion, but it makes me feel I am doing something.

One sees Jeremy Hunt bringing in the 28 days to a definitive cancer diagnosis, when at the same time they deny patients some cancer drugs. Doesn’t equate to logic the way I see it.

I know M UK will do all it can to get these drugs available for us, but I do feel we should all be raising a voice in one way or another.

[susieParticipant]

Jan. I just wanted to say how well you have put it. We have to stand up as one body to try and get this decision overturned. It’s bad enough to cut one drug but two ! If Scotland and Wales can have these drugs let them explain why not in England.
I shall be emailing a lot this w/e. Health Secretary, David c and my local m p .
Come on everyone the fight must start.

[susieParticipant]

Just a further thought. That lady from Nigeria that had £145.000 worth of nhs (maternity) services would have got almost 19 cycles of Revlimid.!!!

[susieParticipant]

I feel the same as all the previous posters. I’m absolutely gutted. I don’t understand that pom appears to be available under the NHS in Scotland and Wales, but in England it isn’t.
I shall be emailing my MP and anyone else I can think of. However this is going to take everyone bombarding the officials until they give in. I’m sure Myeloma UK will do all they can to help us.

Has anyone started a petition on change. org ?

[susieParticipant]

Hello Helen

Thank you so much for your reply. I find it a real comfort to “talk” to people who know what its like. I do go to a support group but we’re on summer break at the moment until the end of Sept. I do know I will get over how I feel at the moment. You have to don’t you.
May I ask how high your PP’s went before they started you back on treatment ? And how you found the Velcade compared to the lenalidomide ? ( I know everyone reacts differently)

Once again my thanks

susie

[susieParticipant]

My Dear Vicki

I was so sorry to see your very sad news. Colin is at peace now. My thoughts and prayers are with you during this very sad time.

susie

[susieParticipant]

Hi Peter and welcome. You will find some very helpful, knowledgeable folk on here. I know when I was at the start of the MM life I found it so helpful and comforting to speak to people going through the same hardship.
I wasn’t having Velcade but was on the Myeloma X1 trial and on Revlimid, Dex,and Cyclophosphamide. I always found the dex made me breathless and my ankles used to swell. It was a horrible feeling but it does wear off.
Where are you being treated ?
Best Wishes
susie

[susieParticipant]

Hi Andy

Well done. So pleased for you. Hope it keeps going like that for a very long time. You deserve it.

Best wishes

susie

[susieParticipant]

Hello. I’m sorry you have had to join this forum, but welcome. You will find lots of knowledgeable folks on here.

Wasn’t on thalidomide myself, I am on the myeloma x1 trial and was randomised to Revlimid, so I can’t speak from experience. However everyone reacts in different ways, just as myeloma is a very individual disease.

I suggest you phone the information specialist nurses on Monday. They’re brilliant and so so helpful. I’m sure you will find them helpful.

Best wishes

susie

[Author]

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