[susieParticipant]

Hi Teresa
That’s really interesting and I shall bear it in mind when I next require treatment, which I hope will be a long time from now.

I’ve heard good things about Southampton Hospital so sounds though your hubby is getting the best care.

I wish him all the best

susie

[susieParticipant]

I’ve just finished 8 cycles of VMP, and my PP’s have plateaued at 11 which I must say I am disappointed in. I had at least hoped it would get down to a single figure. There has been no mention of continuing treatment.
I understood the maximum Velcade one can have is 12 cycles (NICE protocols ) Also that maintenance is not approved in the UK unless you’re on a trial.
I would be interested to hear how you’re getting maintenance offered and which hospital you are at.

susie

[susieParticipant]

Hi,

I am on my 8th & last cycle of velcade, melphalan, & prednisolone and I too have plateaued at 11, from 54. I am rather disappointed it hasn’t, at least, reached single figures. I haven’t found the treatment too bad after the first two cycles.

I intend to take Circumin, with agreement from my consultant, in the hope it will keep things in check. If it works all the good, if it doesn’t no harm. It’s such a shame that maintenance is not approved in the uk. Rather short sighted I think.

Rebecca- I hope your dad gets a long time before things become active again. Take care.

susie

[susieParticipant]

Hi Paula

I was very interested in your post. I have been reading up as much as I can about curcumin and myeloma, having spoken to my consultant about my starting it when I’ve finished my next and final cycle.

I would appreciate info on what is the best dose. I have seen a post on m beacon that “doctor best” make is a good one. I don’t know if you’ve heard of it. It certainly is a minefield.

All good wishes

susie

[susieParticipant]

Hi Denise

It’s normal to have fatigue whilst on chemo. It’s one of the common side effects of most treatments, depending to a degree, on which you are on.

Just listen to your body and rest if you feel so, but also try to take a little light exercise such as walking when you feel up to it.

Best of luck

susie

[susieParticipant]

Hi Michael

I”m doing well thank you. Things improved at the hospital and I now see my own consultant who is absolutely lovely. I have 2 more cycles to have of the MVP and apart from the first week of each cycle, when I have to take the tablets, I don’t feel too bad at all from Velcade. My paraproteins are down to 12 from 54 and light chains are down to normal limits.

Thank you for enquiring and best wishes

susie

[susieParticipant]

Hi Sue. Thanks for your reply. Were your paraproteins measurable when you started taking Turmeric and if so have they dropped as a result. Also what dose did you take. ?

Best Wishes

susie

[susieParticipant]

Hi Peter

Thanks so much for your reply. I was in a panic about the pain but luckily it gradually wore off by the end of the weekend.

I’m sorry you are still experiencing problems and I hope it settles soon. Take care

susie

[susieParticipant]

My hairdresser will not colour my hair either when I’m on treatment or for a long time after finishing.

[susieParticipant]

Maureen,

I was so sad to hear your news that Ian has lost his fight. My thoughts are are with you and your family.

susie

[susieParticipant]

Thanks for your reply Michael. I so agree it has to change but haven’t a clue how to achieve it. I get angry when I think about NICE, who are interested only in the financial cost in, it appears, the short term. For example in the case of ixazomib, an oral drug, do they consider the monies saved in reduced hospital appointments.

All beyond me.

susie

[susieParticipant]

Hi Ian

I’m at first relapse and my paraproteins have been rising very very slowly over the past two and a half years since finishing induction Revlimid etc.

The MDT at the main hospital apparently said I was to be treated again when the PP’s reached 50. It got to 54 and I was started on velcade, melphalan and prednisolone. I’ve just finished cycle 3 and have 3 more to go. It worked very well with the first two, but the pp’s seem to be leveling so I just hope its not becoming refractory.

Best wishes

susie

[susieParticipant]

Have you tried talking to your GP about your concerns. They might refer your dad for a second opinion.

I know how you feel though. I used to have a brilliant consultant who saw me threw MGUS then when it became active myeloma. I had absolute confidence in him. Sadly he retired at the beginning of this year. I am now in first relapse and am on treatment but each clinic is with a different registrar, some senior some junior. There is no continuity and I hate not knowing who I am going to see or if they know what they’re talking about. Actually the chemo nurses give me more confidence than the doctors. They haven’t yet been unable to answer a question. Brilliant girls.

I hope you get a referral. It’s those how shout that get things in the NHS of today, so good luck.

Best wishes

susie

[susieParticipant]

C & Gregg

Thank you so much for your replies.

I shall be phoning the info nurse about my having am extra week break. I don’t see it can make a lot of difference. My PP’s are down to 18 from 54, so one extra week surely can’t be detrimental.

Unfortunately I’m not near a Maggie center. Wish I was as I’ve heard such good thing about them. I did go to a support group at a different hospital about 20 miles away but I found them very “clicky” and there was no one from my one.

I wasn’t like this with my first treatment (RCD) it’s relapsing that has hit me so hard but no doubt I’ll get through it, we don’t have a choice do we.

Thanks again and my best wishes

susie

[susieParticipant]

Hello Peggy

I would suggest you call either 111 or an ambulance straight away. After 7 cycles of treatment,for your husband to suddenly start behaving in this manner suggests something is going on. Be on the safe side.

I wish you the very best and hope your husband is ok. Keep us informed how things go.

Best wishes

susie

[Author]

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