[jeff605Participant]

Hi Susie, had a slight reaction to the first years jab, bit feverish and felt rough for a day or two, but since then have had no significant reaction at all Had this year’s last week. So maybe it’s one of these things that seems so common with Myeloma where we are all different, but I would go with the consultant’s wishes, mine was the same, quite insistent that I went for it. Jeff

[jeff605Participant]

Rebecca,found the 38degrees petitions on the drugs and signed them all!!! Best wishes Jef

[jeff605Participant]

Nick, what a struggle you have had! I sympathise as I have endured back problems with two vertebrae more or less disappeared together with 5 1/2″ in height Have you lost any height? I had a vertobroplasty over a year ago which has lessened the pain and I can now walk a few hundred yards – big improvement so hang on in there! I have been very fortunate and have seen a gradual decline in P/ps and am now well down in low single figures, I declined a set for several reasons and luckily the chemo (3 different lots) has given me pretty tolerable side effects. You have had a hard time getting there, long may it continue Jeff
Jeff

[jeff605Participant]

Dusk, I think you are right about a campaign across all the
Cancer groups , it would be that more a powerful representation. I would suggest a petition similar to those set up by 38 Degrees, which have wide veiwing on the internet.( Ive signed several). These attract attention from those not directly involved too. Unfortunately due to family pressure mainly my middle daughter who had a stroke last year and is taking a lot of my time up visiting, etc., added to my lack of energy and strength in the mornings – a new side effect that has crept in – I couldn’t give it the time and effort required. Any volunteers out there?
Alex, I am in the same position, up now, but pretty nacked. So soon be going like a train for two days, by Friday will be right down and wondering why I’m bothering! Then I suddenly remember its just the steriod effect . Good fun or what !!

[jeff605Participant]

Point taken, letter to Sir Allan Duncan to be composed and sent forthwith!! I shall wait until steroids wear off though.

[jeff605Participant]

Alex, please don’t think that I unaware of the political aspect of these problems. However I do feel that blaming/accusing individual politicians is a waste of effort, which hopefully can be better applied. What political party has ever carried out what they promised when seeking power. I would add that I am actively supporting the campaign against TTIP.I have a daughter who had a stroke, when in hospital lately was moved wards 9 times in 10 weeks by some bean counter so I don’t like them either!!, My friend that has just died was one for who palidomide had stopped working with nothing left to try. Anyway I just hope if we work together we may be able to influence decisions

[jeff605Participant]

Can I suggest that we don’t get involved in political personal slurs however well intentioned, I can’t see the value to the campaign against the actions being taken concerning the withdrawal of the drugs Jeff

[jeff605Participant]

Hi, talked about this with my consultant last Thursday -good news was p/ps down another point now at 1.7!- saying how concerned we all are. She was – and she is one I trust – not to be worried, they were confident that they could deal with remissions and saw no real cause for concern. She is not one to mince her words, she tells you as it is. Has anyone discussed it with a consultant? Lost a good friend this weekend, he had run out of options, such a nice man, I shall miss his cheerful support. Although quite ill and suffering, he was always more worried about me than himself when we met at the clinic and when he visited me. Sad. I hope my comments bring a little piece of mind. Best wishes Jeff

[jeff605Participant]

Hi Ellen thanks for the information, looks like we just have to hang on and hope for the best. If there is anything we can do to help influence the decision making please let us forum users know. Jeff

[jeff605Participant]

Hi All, well this has really stirred things up hasn’t it? I’ve contacted Myeloma UK and asked them if they can explain exactly where we stand in the light of these decisions, as I for one am not fully conversant with whats been decided – I just know it’s not good news. I will feedback any answer and information I get. Try not to get too down over this, easy to say I know. Best wishes to all Jeff

[jeff605Participant]

I don’t know if Myeloma UK could give us some guidance on how these decisions will affect our future treatment, it is certainly very disturbing information with huge implications on our future treatment and survival. I will look at contacting Myeloma UK to request further details. Jeff

[jeff605Participant]

Hi Tom, I am in the same position as as yourself, on Revlimid and Dex, which is working well at present. As you say, devastating that what is probably the last fall – back drug has been put out of reach to us. It has kept a friend of mine going for several months although it has now ceased to work for him. It’s even more annoying that this is a cost – based one, rather than the effectiveness of the drug. I wonder if there is anyway we can protest this decision ? Jeff

[jeff605Participant]

So sorry to hear of Colin’s passing, as I know even when you expect it it’s still. so hard. Jeff

[jeff605Participant]

Hi, Ben.When I was diagnosed the S.C.T.cut off point was just past my age although I was told I could still have one ( this age has since changed I believe). I had researched the procedure, realised how arduous and lenghty it would be, talked it over with the consultant and family,and decided it wasn’t for me. History has proved it to be probably the right decision, having since lost my wife suddenly due to unsuspected lung cancer, and a daughter having a cancer followed by a brain bleed some 18 months ago which she is still very poorly with. Fortunately the chemo seems to be working well now I am on Revlimid, having brought me into partial remission. Velcade – I was on this for 6 months, initially it slowly brought my p/ps down but then plateaued. Side effects were hair loss – I came off it before this was serious – and periphial neuropathy in my feet and hands, which I still have, slowly decreasing, once more to a nuisance level rather than serious.Hope this helps, good luck with the velcade, Jeff

[jeff605Participant]

Interesting subject and one I have wondered about. At Leicester I see one of 5 consultants, and occasionally a registrar, these vary, this so far hasn’t been a problem. The consultants are all pretty good – although I do have favourites – and seem to have a good knowledge of my case and my problems. I believe they have a case conference the day before the clinic. I keep meaning to ask what the set up is, i.e. is there a myeloma specialist among them. My treatment sofar has been good, 3 sets of chemo drugs tried. referral for back problems quickly organised, questions answered, letters forwarded. What the classification of Leicester is I don’t know, and haven’t as yet worked out how to find out ! Regarding accessability to treatment, I was offered an S.C.T.. which I declined, C.D.T., Velcade, and am now on Dex – which is why I’m writing this at 3 oclock in the morning !! – and Revlimid, which I am pleased to say is working well.
I have read several good reports on Marsden, and the treatment given there. hope this helps and the relapse is a long way off. What a b—–r this disease is !! Jeff

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