[phil47Participant]

Hi Rebecca,
I currently take AlphaCurcumin Plus from The Really Healthy Company who are a UK company. See my posting from 12 Sep as to as to the reasons for choosing those but it is a minefield! I did say in that that it “contained” BCM-95 but I now realise that is the “type” of Curcumin – also referred to as Biocurcumin or Curcumax I think.
Phil

[phil47Participant]

Hi Stanley,
Thanks for prompt reply. Yes I did mean 8g per day!
Regards
Phil

[phil47Participant]

I have just taken out an annual policy worldwide (excl USA) with World First for £134. The annual policy was only £4 more than a single trip policy to Dubai for 3 weeks! Last year an annual policy (inc USA) was cheaper than 2 single trip policies for a week in Vegas and a week in Egypt.
World First do use a different questionnaire to most the companies though and there are a lot more questions. They ask about blood counts, which the standard questionnaire other insurance companies use dont but they’ve still agreed to cover me even though my RBC is below normal range (would have bee £114 if normal), though they wouldn’t when my WBC count has been low. When they haven’t covered me I have used Avanti, Freedom and TravelTime.
Best Wishes
Phil

• This reply was modified 8 years, 8 months ago by  phil47.

[phil47Participant]

Hi,
I realise it is quite a while since any posting on this chain but I thought I’d keep it all together rather than starting a new one!
I had my 2nd SCT in Jan 15 and my pp is now undetectable for the 1st time since diagnosis 3.5 yrs ago. As i am not on any form of maintenance I have decided to give Curcumin a try as I felt it can’t do any harm. However, my Consultant chaired one of the Info days a couple of years ago and someone asked about recommended dose. He said there was no clinical evidence and therefore would not advise on this.
I have read up on this myself and read Margarets blog which suggested working up to 8g per day as Jan had mentioned in an earlier posting. However, there are many versions of Curcumin out there and I read the most effective are those containing BCM-95 and Bioperine which can increase absorption by up to 7 times over Curcumin alone which is poorly absorbed. The version I take which has all these ingredients is AlphaCurcumin Plus, which come in a bottle of 60 tablets each containing 250mg Curcumin and cost around £30. If I were to take 8mg per day this would be 32 tablets and cost me over £100 per week but because of the high absorption would I be overdosing (as well as rattling and skint!)?
I would appreciate any comments on how people who were taking it when this original discussion was set up 2 years ago are doing, and which versions of Curcumin they are taking, in what dose, and how that was decided upon.
I dont ask for much do I?!
All the best to everyone
Phil

• This reply was modified 8 years, 8 months ago by  phil47.

[phil47Participant]

Hi Neil,
I suggest you take a look at the thread posted by Nerys on the General section under the heading "Myeloma XI trial next step" (or similar). I'm back on 10mg Rev and 200mg Vor with no side effects and Vor will increase to 300mg next cycle all being well. It is a dilemma and its different for each of us but in my case, my Myeloma seems quite aggressive. At diagnosis my pp was 73 and BMB >90% and although CTD got pp down to 6.4 it began to rise immediately once CTD finished and had doubled by harvest time. It started to rise again in June (9 months post SCT) having remained stable on full maintenance treatment for a few months, and now maintenance is back early impressions are that it is stabilising again so in my case it's worthwhile but I think there are a number of things to consider. If its side effects you are worried about, I had none that affected me in terms of how I actually felt but I did have episodes of neutropenia but the that has been a problem since my SCT irrespective of whether ive been on treatment or not.
All the best with whatever you decide
Phil

[phil47Participant]

Hi Nerys,
I had my SCT in Sep 12 and was randomised to receive Revlimid and Vorinostat in January. I still had detectable paraprotein (9.4) but it was stable post SCT. However, although I felt no side effects from my maintenance treatment I became neutropenic at the end of the first 2 cycles and remained so for a month or so after the 2nd so my Vorinostat was stopped and my Revlimid dose reduced. I then developed a skin rash that they said was due to the revlimid but I wasn't convinced but they stopped my treatment altogether. My paraprotein then showed an increase on my blood test at beginning of July. Ive now gone back onto Revlimid at full dose with no side effects and we will see if that stabilises (or reduces) my pp levels. If it does that will convince me that maintenance treatment is worthwhile.
Hope all goes well
Phil

[phil47Participant]

Hi Rob,
Sorry it's taken so long to reply. Been out and about trying to enjoy the good weather and not been on the site for a while. Things still OK with me, managed a 6 mile run a couple of weeks ago and played golf last week. A few of us CAMRA members do a 5-7 mile walk along the canals reach week, ending up at a CAMRA recommended pub for lunch. My main problem is my neutrophil counts, they're all over the place and I'm regularly just below 1 but no idea why they fluctuate so much. Hope things are well with you.
Phil

[phil47Participant]

Hi Ali,
Thanks for the info. Yes, I have tried anti-histamines of one sort or another as my skin has generally been extra sensitive since my SCT and i think they do help a bit. Fortunately I've not had any physical side effects so its really frustrating about the neutrophils, I want to jet off somewehere for a holiday!
All the best
Phil

[phil47Participant]

Hi,
I got randomised to Revlimid and Vorinostat at beginning of Jan. It was with some reluctance as I had felt great since my SCT on no medication, but decided that if it could prolong my life I'd got to go with it. Blood counts dropped slightly for the first 3 weeks but on week 4 (when ironically you dont take anything) I became neutropenic, came out in chickenpox like spots, developed a temp and was admitted for 2 days. They didn't seem to think it was a drug reaction but a viral infection (probably chickenpox) but having read other patients testaments I'm not so sure. It is very confusing as to whether you lose your immunity after an autograft SCT or not! Apart from the blood counts dropping I have had no other side effects though, in fact I had more on Thalidomide. I'm now into week 3 of my 2nd cycle so I'm holding my breath to see if I have the same problems in week 4 as the first time around. At the end of the day people react in different ways to different drugs so it's impossible to predict. All the best with whatever you decide.
Phil

[phil47Participant]

Hi Vanessa,
I was diagnosed in Mar 12 aged 47 with a biopsy of 95% plasma cells and a pp of 73. After 6 cycles of CTD they'd got me down to 4% on biopsy and pp of 6.4. However, as soon as I stopped the treatment my pp started to increase again and so my SCT was made urgent. The last pp measurement taken before my SCT was 13.9 and I was keen to have more treatment to bring it back down again but they said it was not necessary (it may have been higher than that by the time I actually had the SCT). My first pp reading after my SCT was the same as before, but when I had my biopsy 100 days post SCT I was still at 4% and my pp was down to 10 (with no treatment since SCT). Despite pp still being present my consultant says I am classed as being in remission, the biopsy is the gold standard test, and my pp is still slowly dropping (9.3 last month) and i have now started maintenance treatment which has the possibility of reducing it further.
I can imagine how you and Stewart are feeling. I thought I was bullet proof, I had no symptoms other than a visual problem in my right eye whilst away skiing, which turned out to be a blocked vein due to the thickened blood. I was as fit as a fiddle.
However, hopefully Stewart will sail through his SCT. It seems the younger the better, I had only minor symptoms although I was expecting it to be terrible. Make sure he sucks loads of ice when he has the chemo (I did for 2 hrs) and drink at least 3 litres of water per day. Clean your teeth after every meal and mouthwash with Corsodyl. I had minimal mouth discomfort following this regime and didn't have to stick to soft foods.
For reassurance, I'm able to go to the gym again, play golf and go canal walking (6-7 miles) each week.
Hope everything goes well for you.
Phil

[phil47Participant]

Hi,
Thanks for the advice. Going back to Megan's dilemma, I'm not a "jewellery" man either, but being single probably makes it even more important for me that I do wear something as I may be alone if and when something happened, and as I previously did do a lot of travelling, some of it on my own, and would like to start again, it is obviously best to go for something that is internationally recognised.
Phil

[phil47Participant]

Hi,
I agree with Wendy. My consultant has basically said I can do whatever I like providing it doesn't cause any discomfort. I've done an hour in the gym twice this week followed by half hour swim and did a 7 mile walk on Wednesday. I swam right through my induction treatment at the local council pool without any problems at all. I even managed to get insured to ski in Colorado for a week over Christmas for £158 (though didn't go in the end!).
Phil

[phil47Participant]

Hi Mike,
Best of luck with your SCT. Hopefully it won't be as bad as you expect it to be, mine wasn't. Just keep sucking the ice and mouthwashing and stay positive!
All the best
Phil

[phil47Participant]

Hi All,
Yes, good news last week. Neuts up over 1 so everything heading in the right direction.
Chris, hope you're recovering well and are back on the bike before Christmas (weather permitting!)!
Best Wishes to all
Phil

[phil47Participant]

Hi,
Thanks for the reassuring replies. I'm probably a bit paranoid because although my induction treatment (CTD)worked really well (reducing BMB from 95% to 4% and p-p from 73 down to 6.4) as soon as I finished, my p-p started to rise again and had doubled within 5 weeks. Anyway, next appt tomorrow so fingers crossed!
Phil

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