[bren123Participant]

Hi susie,
Thank you it has really helped.
I hope the treatment you are on, is going well, and not too many side effects.
May I ask, did you go into complete remission or VGPR like me?
Hopefully, the cure will come soon.
Bren

[bren123Participant]

Dear all,
I hope everyone well.
I have come off the trial, and cancelled the stem cell harvesting as my instinct said no, I am aware that SCT is the best treatment available for longer remission, but I spoke to my consultant last week she will support any decision I make, if I am still in remission ,I am VGPR, maybe to have stem harvesting after Xmas. I am also looking at lenalidomide as a maintenance dose if I use my works private health care.
I have found out my heart condition is due to treatment and should go after treatment stopped, but will find out after new echocardiogram. I have also been diagnosed with osteonecrosis and seeing the specialist about this and looks like treatment related.
Has anyone who is young and fit also declined SCT and has remission been short?
Anyone on lenalidomide maintenance treatment and is the side effects very bad, or are they tolerable
Sorry to go on,
Bren

[bren123Participant]

Hi everyone,
I should be having a SCT, but having second thoughts as routine echocardiogram shows minor heart damage, consultants says no problem, I am having a meeting next week to discuss all the options as I am on a trial.
I would like to know if anyone pleased they did not have a SCT and whether remission times were shorter than if they had a SCT
I am 64 years old and fit, so standard treatment is a SCT
Help!! I would like your views.
Keep well everyone, and sorry you are on this forum, but thanks for your comments in the past.

[bren123Participant]

Hi Rosary,
I think C-ART is the way, but at the moment it is for people who match certain criteria.
I found myeloma clinical trials u.k very helpful and I phoned the helpline about the drugs on my trial, while I was making my decision.
I also look at Beacon USA , as lots of info about new drugs, what is happening in the USA, Germany, and China, because they way ahead of the U.K unless you are on a trial.
Sorry, if I sound like a geek, but I like to look at different scources.
Hope it helps in your decision.
Positive thoughts
Bren

[bren123Participant]

Hi Rosary and Sue
Sorry you are both on this forum.
As I said before I was diagnosed with smouldering myeloma in Aug.2018. I was on a randomised trial, I was chosen for watch and wait. In May at my check-up, my consultant found my anaemia levels were low, so I was put on 4 days of steroids and a blood transfusion ready to start treatment.
I am being treated at Kent and Canterbury hospital , I am the last person in the country to go on the Cardamon trial from UCL.
I have just finished my first cycle of treatment, Carfilzomib/Cyclophosphamide/Dexamethason.
Susan, it is the randomised trial, if the induction treatment for 4 months goes well, I will go upto London to have my stem cells frozen. Then the randomised trial begins, either my stem cells keep frozen until I relapse, I will then have a further 4 months of treatment, or the SCT as the gold standard for young and fit people. I will then have 18 months of maintenance treatment.
Rosary, if you can get on a trial, please do, as you’re so well looked after and anything is picked up very quickly.
I am very lucky compared to some on this forum as my consultant,trial team and the nurses on the chemo ward are all lovely.
I thank my fantastic GP for picking Myeloma up as so many GPs miss it.i had very high blood pressure, my GP ordered routine blood tests and found smouldering myeloma.
I have found the info on this forum superb and a great help to me. I hope this helps as I am just starting this journey too.
Sorry, it is so long.
Stay positive and good luck.
Regards
Bren

[bren123Participant]

Dear all,
I have high risk smouldering myeloma, on a trial but computer said watch and wait with extra tests. I take curcumin to keep pp stable.
I was diagnosed Aug 2018 and like everyone it was a shock.
My pp is steadily rising so I may have treatment soon
I just want to say, all of you seem very brave, as I am dreading treatment!,
I am very positive and I know I will live to 90!!
Keep smouldering , or everyone else be in remission until a cure is found.
I find it very informative reading your posts, so I have some idea what happens in the future .
I think myeloma must attack very kind and brave people
Bren ( girl)

[bren123Participant]

Dear Mira and Debbie,
Mira, sorry to hear your levels are rising, mine are too,the consultant said as long as blood tests are stable, and not any symptoms that is ok.
Sorry,you have cancelled your holiday.
I have booked a last minute cruise to Amsterdam in the new year to make the most of my time before treatment.
Debbie, I just take a supplement but I had to check first as I am on a trial.
I expect it was a shock for you all, as it was for my family.
Keep positive and keep smouldering
Bren

[bren123Participant]

Hi Mira
I have just started taking curcumin yesterday , so I am hoping to stay smouldering as long as possible.

I see the trial team in early Nov. Blood urine and other tests especially 24 hour urine test, luckily, I am off work that day!! I see the consultant later in Nov .

I have an annual policy and updated about Smm and high blood pressure, as long as I am not on any treatment for Smm ,I had to pay another £46 for the year.Hope that helps.

Regards
Bren

[bren123Participant]

Hi Mira
I don’t think trial is all over the uk,I am on the trial in Canterbury.
As I said, I am watch and wait with further tests, but the girls and guys having the treatment, it has reduced their paraproteins significantly.

Have you got over the shock yet? It took me a while. Was your Smm found out by routine blood tests?

Good luck and keep smouldering!!

Regards

Bren

[bren123Participant]

Hi Peter
I hope it is not myeloma, but it is better to know.
Compared to a lot of people on this page, I feel lucky.
After all the tests, I was diagnosed with smouldering myeloma Aug 2018
I had very high blood pressure, my gp organised routine blood tests,which my gp asked for further blood tests and an urine sample.
The tests came back and the go diagnosed myeloma, which was scary. I was referred to the haematologist within 10 days.
The tests came back as smouldering, and I am on a trial being closely monitored.
I thank God, my gp was on the ball, and acted quickly.
My gp,my consultant and trial team are fantastic, and I am in good hands.
I hope the results come back soon and it is not myeloma.
Tell your wife,it helps to worry together.

[bren123Participant]

I have been diagnosed with smouldering myeloma in august2018.
I have completed all the tests for this trial at Kent and Canterbury hospital
I was randomised by a computer to have watch and wait.
I will be closely monitored and have more tests so if anything happens, I will start treatment for myeloma.
It was a huge shock for me and my family, as it was found by routine blood tests.
Did everyone think they will die within a short time?
I am a very positive person and try to see the funny side of life(black humour).
Thank God for my family, friends and work.

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