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…[Read more]

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

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…[Read more]

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…[Read more]

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

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…[Read more]

Best Wishes

susie

I would be interested to learn if anyone takes Curcumin and if so, do they find it does help control their paraprotein levels and at what dose.

I’ve been reading about it some having success and have spoken to my consultant about who thinks it’s worth a try. I have two more cycles of treatment to go and thought I would start it when…[Read more]

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

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

susie

All beyond me.

susie

I’m at first relapse and about to start cycle 5 of Velcade. Melphalan, and Pred. After two cycles my PP’s dropped from 54 to 28 and are now 15. Responce is certainly slowing down. The consultant told me today its unlikely to drop much further and next remission will not last as…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

I’m half way through my 3rd cycle of velcade, prednisolone and melphalan at 1st relapse. It’s affecting me very badly and I’ve spent the last two and a half months feeling awful. It certainly doesn’t help living on my own, its on my mind the whole time and its made me so depressed with panic attacks. My GP has started me on citalopram but said…[Read more]

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

I will try the info nurses and see if they can suggest a way forward.

I didn’t get his name. He was Indian/Asian and didn’t speak particularly good English.

I shall ask to see my named consultant but whether they will comply I don’t know. Will give it a try.

Thank you for your good wishes

Best wishes

susie

I just wanted to thank you for responding to my thread.

I still feel disturbed by the whole thing and I dread going on Thursday for my velcade but it has to be done.

May I ask, when you changed your consultant how did you do it and did you move to another within the hospital you were being treated at or did you go to another hospital…[Read more]

I’m in need of some advice or opinions please, as I don’t quite know how to move on. Here is my concern.

I have been first monitored for MGUS then when it progressed to active myeloma for about 7 years, always under the same consultant, in who I had a good relationship and complete confidence in. He sadly retired some six months ago and…[Read more]

Myeloma treatment is meant to be a joint enterprise between the medical team and the patient. I was on the Myeloma X1 trial when first diagnosed and found the cyclophosphamide did not…[Read more]

Very sorry to hear of your reactions to the drugs.

All I can say if it helps, I have just completed cycle 1 of velcade, prednisolone and melphalan at my first relapse. I have found that 24 hours after the velcade I have developed the most intense heartburn/reflux I have ever experienced. This is inspite of 30mgs of a PPI. It mekes me…[Read more]

Had my 4th velcade today. My Neuts are now 1, however they went ahead and gave the jab. The doctor said she checked bloods and protocols and they only delay the next jab if Neuts go down to .75. The remaining bloods aren’t too bad.

I have a rest week before I go back to the hospital, so I just have to make sure I don’t pick up any…[Read more]

I’ve had a read of it. I’m pretty obsessional on cleanliness and oral care anyway. I get the impression the time to start worrying is if it drops to 1 or below, so I hope it doesn’t do that before I go next week. I’m a right worrier.

Enough of me though, how are you doing.

susie

What experience has anyone had with Neuts at this level. I’m rather concerned.

Best wishes to all

susie

I’m feeling bit better today, although I still feel very weak and wishy but if this is all I have to put up with, I shall not grumble. I can only assume yesterday was me coming off the pred.

I’m off tomorrow for my second Velcade. Fingers crossed.

Best wishes to all

susie

I just wondered if anyone has been on these drugs and how they felt after taking them ?

Best wishes

susie

I must say I’m very anxious at the thought of taking such a high dose. With my induction I had Dex 20mgs and found that perfectly tolerable. This just seems somewhat ridiculous.

Many thanks again and best wishes to you

susie

Best wishes to all

susie

Had my assessment today and will have my first Velcade tomorrow. I’ll pick up the other drugs at the same time. I’m very, very nervous at the thought of starting all these drugs again. My last lot was RCD and made me feel like death for the first 3 months till my body got used to them. My main worry is the Melphalan but I was told…[Read more]

I am coming to terms with the fact I have to have more treatment. I hope it doesn’t affect me too badly. My spine has been very bad lately and I wonder if its…[Read more]

I’ve been really down since tuesday. It’s the melphalan that’s getting me so anxious, and I’ve had episodes of quite severe anxiety. So this morning I rang my gp to try and get some low dose valium, just to calm me down a bit. I’m sure my anxiety is fueled by me living on my own.

Anyway here’s a tale to show the…[Read more]

I live alone and my induction treatment ( Myeloma X1 RCD ) hit me hard in the beginning and scared the living…[Read more]

I was on the same trial though I didn’t have a transplant. I was offered maintenance and it took me a few months to decide not to have it. I’ve had 2 1/2 years drug free and feeling very well. I feel it’s allowed my body to fully recover and hopefully when I relapse, the disease may be more sensitive to the drugs. But that’s just my own…[Read more]

Thanks so much for your reply. I found it somewhat reassuring.

My PP’s were 64 when I first started treatment. I had been monitored for MGUS for about 3 years with a PP of around 30, when suddenly it shot up and I developed excruciating leg pain (sciatic type) from what turned out to be a large sacral plasmacytoma. My bloods have been…[Read more]

That’s interesting. I’m in biochemical relapse, have no symptoms and feel well. My PP’S have risen very slowly since I finished treatment over 2 years ago. They were at 48 some 2 weeks ago and the hospital has been saying all along when they get to 50 they will do imagining and maybe a bone marrow.

I can’t understand them…[Read more]

I would be very interested to hear what level paraproteins were before treatment was commenced, especially at first relapse.

Best wishes to all

susie

Welcome to this site and sorry you’ve had to join us.

I had Revlimid and Dex as part of the Myeloma X1 trial. That was in 2014/15. With the first two cycles I did find it made me feel rather rotten although I’m sure a lot of it was down to anxiety. I knew little about Myeloma and its treatments, or what side effects were common.…[Read more]

I shall be starting velcade in the next few months. Can anyone tell me whether you have to have bloods done before each injection ? Also does anyone get their bloods done at your GP surgery to save a hospital visit.

Thanks and best wishes

susie

I will be starting Velcade in the coming months. Can anyone tell me whether bloods have to be done before each injection ? Does anyone get their bloods done at their GP surgeries to save a hospital visit.

Thanks and best wishes to all

susie

I do wish you all the very best on your new trial. You deserve it.

Best wishes

susie

So don’t be worried. You will be monitored regularly for any disease progression.

Best wishes

susie

Thanks for that. I must have missed it. I’ll have a look. It’s good to know its there.

susie