[john-bParticipant]

 

Hello all,
In 2007 as a result of a blood test for a knee joint replacement a blood condition known as Monoclonal Gammopathy of Undetermined Significance (MGUS) was found that could eventually lead to Myeloma.In June last year I was informed that the time had arrived and was offered the opportunity to go on the Myeloma XI trial which I opted to take part. The randomisation process preceding treatment meant I would be on the CTD route which is the standard treatment consisting of Cyclophosphamide, Thalidomide and Dexamethasone.

Unfortunately the Dexamethasone caused various health problems resulting in 4 hospitalisations including an operation for a suspected perforated bowel, which fortunately had sealed. Each hospital stay meant a stop to the Chemotherapy and I am hopefully on my last 3 weeks of 8 cycles of initial treatment commencing today.

My paraprotein reading prior to the start of chemo was 76.3 and even with all the stop and start was dropping significantly to the extent that yesterday it was down to 10.1. The trials nurse intimated it was hoped to reach a level at least 90% of the initial reading, therefore with a little luck I hope to get to 7 or below on my next visit on 20Feb.

The consultant has stated that if treatment progresses as it has to date, excluding the hiccups, he considers that a stem cell transfer could be appropriate. I shall review my options at that stage and would welcome any advice.

• This topic was modified 11 years ago by  john-b.
• This topic was modified 11 years ago by  john-b.
• This topic was modified 11 years ago by  john-b.
• This topic was modified 11 years ago by  john-b.
• This topic was modified 11 years ago by  john-b.
• This topic was modified 11 years ago by  john-b.
• This topic was modified 11 years ago by  john-b.

[john-bParticipant]

Sorry for the typos. I shall rewrite tomorrow to make it clearer.

John B

[CarolsymonsParticipant]

Hi John

You are on the standard NHS pathway as you weren’t randomised to receive Velcade through the trial. That pathway is CTD, which if successful puts you into the SCT line. Now I don’t know what happens if you refuse or delay the SCT, as I have elected to go straight to transplant and am now in Hammersmith Hospital London, 9 days post transplant. Tomorrow they will start the 3 days of Neupogen injections that should kick start my new stem cells into action….at least that is the plan!

I decided to go straight to SCT as I see it-yes as a gamble, but also a chance maybe to be drug free for some time. Let’s hope I get many years’ remission from the transplant. I also want to retire and go home to my family in Australia.

Carol

[john-bParticipant]

Thanks for your reply Carol. I am leaning towards STC myself and also have family in Perth I wish to visit.

Hope your treatment progresses well .

John

[tonyfParticipant]

Hi both john b and carol.
Like both of you I was/am on the myeloma X1 trials.
Today is my one year SCT anniversary! Looking back some of it was a little troublesome, it took a few weeks before I was out and about, walking the dog etc. a year on my pps are at 1.9 I only visit the clinic very three months and opted for no mantainance drugs, so am completely drug free. We’ve been given the ok to go to the USA so are off later this month, taking my trusty thermometer and a pack of antibiotics with me!
So, good luck Carol, you’re through the worst.
To you john, go for it.
Just remembered one thing, carol! you’ve got to have all your baby injections again!!! Did they mention that.
Regards
Tony f

[CarolsymonsParticipant]

Thanks Tony….you give me hope! Today is day +10 after SCT and I am improving day by day. Today I received the first of 3 growth hormone injections that should kick start my stem cells. I am soooooo looking forward to a period off drugs. My goodness have they pumped me full of them these last few weeks? Of course you expect the melphalan (high dose chemo) but hen they add in anti-nausea, anti fungal, anti viral, antibiotic(3 different types through the drip around day 8) plus the other supportive measures….8 hour saline drips, red cells, platelets, immunoglobin, loperamide for diarrhoea and oral morphine for pain….the list is endless! Thus far I have had few side effects really…vomited a few times, about 5 days of diarrohea (ongoing) and very painful mucositis in my oesophagus…..this is the most trouble as I have been unable to eat or drink for 4 days. The pain is slightly better today and I have given up my hatred of pain killers and received oral morphine today….another awaits me now!

So far no-one has discussed baby immunisations…are they really necessary? I have been very wary of immunisations since my eldest developed Guillaine Barre Syndrome as a result of the measles mumps vaccine….very worrying.

[jmsmythParticipant]

Hi Carol

Sounds like you are getting there. Hope you get home soon. Re the vaccinations. Frank had his SCT March last year and only started the re vacInation about 8 weeks ago. I kept asking consultant and her reply was “the jury’s out on that one”. Then On one visit she said she had informed our doctor to start the procedure. So far he’s had 3 sessions. Given leaflets on side affects that your child might have!!!! He’s has had no problems or reactions. Hope you get it sorted.
Best wishes
Jean

[john-bParticipant]

Thanks Tony

Enjoy your trip to the US

John

[john-bParticipant]

Hi Carol, Tony etc.

How long from finishing your initial cycles to starting the STC. My wife is disabled and unable to do little else other than make an odd snack and I need to plan ahead to enable her to cope whilst I undergo STC. The recovery time afterwards also seems to vary and I am wondering how long it will be before I am able to be chief cook and washer up again. I am 70 years young and reasonably fit.

John

[CarolsymonsParticipant]

Hi John

I completed CTD at end of October with high dose chemo for collection on 11 December and collection 23 December. Transplant was 22 January. But there was a delay in the transplant referral as the consultant was on holiday for 3 weeks and then of course Xmas intervened. I think it depends a lot on the availability of beds at your local facility. I am still in hospital but have been independent from day 1. Even on the rough days I was still able to care for myself and food wasn’t an issue as I have barely eaten for a week anyway.

Today is day +11 and unless something drastic happens to alter things I expect to be completely independent when I return home. I will appreciate having my husband drive me to appointments as London drivers do my head in and he is always good at gently reminding me to eat, even when I do not want to. I am sure though that fatigue will be my greatest enemy as here at the hospital I am falling asleep regularly. I am sure I wouldn’t be able to care for anyone else when I get out, so I suggest you have a house cleaner in place (which I have organised just for 3 hours a week) and/or someone to look after your wife. If you do not have major complications, I think you will be able to care for yourself….allowing 3 to 4 hours per day for extra naps!

Carol

[tonyfParticipant]

Hi John b.
My cycle of drugs was completed in the September, as our daughter was getting married in early Octobers I had said that no matter what I wanted to be there to give her away. So no drugs no treatment. In fact it was planned to start stem cell collection late nov early dec but I went down with an infection so it was abandoned until mid January, that happened and the transplant went ahead exactly one year ago today. At that time I was 68 nearly 69. After SCT I had just under three weeks in hospital, it was a few weeks before I could start walking the dog but was able to do things about the house fairly quickly. As Carol suggest it might be an idea to get a cleaner in for a while, why not have a word with the Macmillan nurse at the hospital, see if they can organise help in looking after your wife, hopefully that help would be short lived and life could resume.
Good luck
Tony F

[john-bParticipant]

Hi Tony,

Thanks for the info.

I will speak to the Macmillan nurse as you suggested. My daughter has emigrated to Australia and I am keen to get down under to see her. The time away from home will be a good guide to how my wife can cope as it is doubtful she could make the trip to Perth.

John

[john-bParticipant]

Hi Carol,

Thanks for the info. It appears there is a little time between the end of CTD and start of SCT. I already have a house cleaner to cut down on my workload.

Both my parents were Londoners and moved to Lancashire before I was born, which is where I live. The hospital with the SCT facility is based in Blackpool.

You are now day+12 and I hope you continue to progress well.

John

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