[susieParticipant]

Hello Helen,

I am so sorry that it seems your myeloma appears to be causing you long term problems. I so hope the interferon works for you. Keep fighting Helen. I shall be thinking of you.

Love susie x

[susieParticipant]

Hi Tom.

Just to wish you all the best for your new treatment. I hope it works well for you and you’re able to achieve a long remission from it.

Love

susie

[susieParticipant]

Hi Tom

As asked. I’m on my 2nd relapse and started iRD last week, which I will stay on until it stops working apparently. So far it hasn’t caused me too many problems but whether there will be a build up effect time will tell. I can’t say I relish the thought of being on so many drugs for a long time.

My treatment at 1st relapse was decade, melphalan & pred. I plateau at 11 on Pop’s. As soon as treatment stopped they started rising.

So there you are, my story so far.

All the best Tom

susie

[susieParticipant]

Hi Tom

Lovely to hear from you after so long, tho I’m sorry you had cause to join us again. It seems so long ago I joined this myeloma family and you were there giving help and advise. It certainly helped me so much at a time when I knew little about my diagnosis and I was so frightened. So I do thank you for that and I wish you all the best.

susie

[susieParticipant]

Hi Pat,

I am so pleased for you that they are going to try Daratumumab for your hubby, I can understand the boost it must have given you both. This disease is the pits isn’t it, although I keep saying to myself I could have something worse.

I’ve just started my 3rd line treatment of iRD, so have a while till I know if it’s working well. So far it doesn’t seem to be affecting me much. Whether that’s good or not remains to be seen.

I wish your hubby all the best.

susie

[susieParticipant]

Hello Michael

Thank you so much for that update. Very interesting.

I have started my rid so I have to hope it works well. Apparently I stay on it until it stops working. What has surprised me is the Revlimid is being delivered to my home by a
Private pharmacy. The trust apparently saves VAT costs because HMRC says private pharmacies can claim back VAT but hospitals can’t. How unfair is that.

Best wishes to all

susie

[susieParticipant]

Hi Helen, How good to hear from you again. I am so sorry that you appear to be relapsing but it does seem the medics still have a variety of drugs still available for you. I wish you all the best with them.

I haven’t actually started my iRD yet. I had a clinic appointment this week gone and my new consultant ( lovely man he is ) said they will ring me within in the next 2 weeks with appt to collect drugs etc. I did get him to agree to 20mgs of Dex instead of 40 as when I was on it at induction it caused so many side effects. I just hope there is no interference from NHS England stopping the ixazomib which happened to Michael it seems.

It seems awful to me that I feel so well (bloods fine) and my only problems is paraproteins. Ah well.

My very best wishes to everyone. Keep up the chat on here.

susie

[susieParticipant]

Hi all.

I’ve been onto the Indian website and am totally amazed at their prices compared to that payed by NHS England. Why on earth they don’t precure drugs from india i dont know, Europe I suppose. They are an absolute fraction of what the NHS pays. Let’s hope that when we are out of europe someone will go down that road. It could open up such hope for us all coz NICE would have no excuse to deny us drugs because of cost.

Best wishes to all.

susie

[susieParticipant]

Hi Andy

So nice to hear from you after so long. I hope you are doing well.

Your advice to me in my early days of M M were so helpful and I was very grateful so thank you.

I’m heading to my 3rd line treatment but i’m enjoying being drug free.

Keep in touch Gary.

Best wishes to all

susie

[susieParticipant]

Hi Jan

I’m so sorry to hear of your relapse and do hope the present treatment becomes more tolerable for you. I had Revlamid for my induction and it gave me many awful side effects for the first 2 or 3 cycles, but they seemed to ease off from then on. So I hope the same happens for you. It did however work extreemly well ending with zero PP’s

I’ve just finished treatment after my first relapse. It was Velcade, Melphalan and Prednisolone. It worked well for the first few cycles then started to plateau, finishing at pp-11. However my pp’s started to rise as soon as treatment stopped. My next lot will be the same as you’re getting.
I dread the Dex. Had it with the Myeloma 11 trial and as with others didn’t suit me one bit.

Very best wishes to you

susie

[susieParticipant]

I too, do not like the new site. I find it drawn out to navigate to the page I may want. I have no intention of signing to Facebook so I’m sure we miss out a lot. I know Andy went there. Each to their own of course.

I don’t know if it’s me, but I somehow feel this whole thing appears to have ” quietened down ” since Eric left. The info nurses are of course brilliant as always. I depended a lot on this forum, coz my haematology unit gives little or no emotional support.

Best wishes to all

susie

[susieParticipant]

Hi Teresa

Thanks for replying.

I think you’re very wise to try and forget the myeloma. I wish I could. Living on my own doesn’t help I suppose. I also use Macmillan forum,it seems to be expanding.

I hope your hubby remains well.

susie

[susieParticipant]

Hi David

How nice to hear from you and thanks for replying.

It’s such a shame the forum is not being used as it once was. I know I learnt so much about everything to do with MM when I was first diagnosed in 2014. I’ve just finished treatment at my 1st relapse. Unfortunately the VMP hasn’t held my parapeoteins down and they’re rising already. So I don’t think it will be long before I start treatment again.

I hope you’re keeping well. Let us know how you are getting on.

Very Best Wishes

susie

[susieParticipant]

Hi Richard.

I’ve just started taking curcumin in the hope it will keep my PP’s at their present level.
You say you have been taking large doses of curcumin, can you tell me what dose you’re taking, and where you get high dose curcumin. It’s a real minefield finding the exact curcumin dose, instead of turmeric strength.

Best wishes

susie

[susieParticipant]

Hi All,

I’ve started taking Curcumin today. I got them at “just vitamins” and hope they work, not only in the hope that it keeps my PP’s down at present levels, but also for my quite severe arthritis which has been very painful (spine) since I did some gardening. Most of my discs have gone together with vertebral slips almost cripples me at times. Dr’s don’t seem interested though.

While I’m here can I ask a question related to relapse. When other’s here relapsed did you get scans (MRI or CT) before you began treatment. When I asked about it I was told “no point you need treatment anyway”. My last CT was nearly 2 years ago since when I relapsed. I wonder if this was a cost cutting thing.

My Best Wishes

susie

[Author]

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