I’m 49 and seven years in remission after a stem cell transplant in 2007. I would echo the above comments about searching the internet as there are so many variables with each patient.
Mike
Hello Treakle,
I was diagnosed in 2007 just coming up to 42, had the chemo and STC (Stem Cell Transplant) that year and I have been in remission since. We gave up looking at the internet at the time as there was so much information to take in from the hospital let alone all the added problems the internet was adding. I had a Hickman line in my chest feeding me the chemo over 3 days at home, the balloon was the size of a hand grenade and it didn’t stop me standing at the pub bar or going for a curry but flying was out during treatment due to the cabin pressure affecting the balloon. I think I was advised not to fly while the Hickman line was in, not sure though. Life went on as normal and the anti-sickness tablets were fantastic, I only came close to being sick once in the Marsden during the whole treatment. Living with the Hickman line became normal day to day life, you work round each problem as it comes, you have to.
From what you have said so far my first concern is your Father lives on his own, I would hate to go through that again living on my own let alone for the first time.
Don’t think ANY question is stupid to ask here or at the hospital, if anything is causing you any concern just ask.
Mike
Hi Eve,
Well if me posting on here helps even one person it’s worth my while doing so, 6th July was D-Day and the day I went in for my STC so as that has passed I’m past the 7 year mark.
I liked the Marsden too but had a couple of strange experiences there. After 3 weeks in and one day home I wanted to go back! I guess that is what some call being institutionalised and I did end up back in there the next day for some tests as I did not feel too good. Also, going back for check ups I was fine until we turned into the road and I started to get very stressed and anxious not wanting to go in.
I have been lucky compared with others and attribute most of that to early diagnosis. That came about due to Trisha Goddard, I found myself sat on the settee watching her awful show asking myself why I had no energy and would rather be watching TV than being out in my workshop. A trip to the doctors and a routine blood test had me in Chertsey Hospital the next day with kidney failure, from there I was referred to St.Hellier and eventually diagnosed. Trisha Goddard, who would have believed it?
Where do you live that the Marsden is a 3hr Journey?
Mike
Hi Val,
That’s eerie, too many sames! Where do you live, it might be the water? I was told that to have Myeloma at my age put me in a very small group of sufferers around 2-3% of the total and I was surprised to see an under 50’s group on here with so many members. How bad is your bone damage? Mine seems to be confined to my skull from the X-Rays and I swear blind that is why I had to buy a new crash helmet from a different manufacturer as the shape of my head has changed but nobody believes me.
Mike
Hi Craig,
Doesn’t sit right with me saying welcome to the forum but I’ll say it anyway! I’ll take a guess from your screen name that you were born 1969 which makes you 4 years younger than me, I was diagnosed 2007 and started the same roller coaster ride you are currently on and I am still in remission. Can I ask what the illness was in 2013 that lead you to be diagnosed? Mine was the onset of kidney failure caused by the Myeloma.
Mike
Can I ask what prompted this friendly reminder?
Hair growing back? Now that’s just showing off Superman! I struggled with clinical depression post SCT and one of the anti-depressants I was prescribed had a side effect that reduced my white cell count. Great fun those tablets were, 2 weeks or more before they take effect and to get off them takes about the same time gradually reducing the dose. I hope you don’t have to suffer the depression I went through.
Mike
Hello Carol,
I was looking at the remains of my Hickman line I kept after removal only yesterday clearing a draw out! I kept it as a souvenir as I lived with it so long and was such a long job in removal, nearly an hour and they were preparing theatre, the cuff being the problem as it had bonded into the skin so well. Some time later a friend told me about the removal of his and the problems he had. The guy was talking to him whilst cutting the cuff and explaining why he had to be so careful around the line as it is so easy to nick or cut which he then unintentionally did! Bit of a panic apparently, and my friend was told off for giggling whilst they attended to him.
I’m no expert just a patient like yourself but if it is causing you pain and stress then the Consultants should be doing something about it, if only to allay your worries and reduce any undue stress. We found that after diagnosis there was so much to take in that you switch off and once things calm down you start to focus on what may to some people be trivial things, then you start to worry about looking stupid if you ask and we did explain this during a consultation. We were told that the team work for us, nothing was too trivial and I saw that on more than one occasion and not just for me but support for my girlfriend.
This might make you laugh, when I had my line installed, and it was installed, not fitted or made to measure as even if it was in my size it came out of a packet without my name on, the Anaesthetist who did the installation came in to see me the next morning to see how I was. Apparently I gave him a bit of a panic as when injecting the pre-med he asked me to count to ten and I went out like a light at 3 desperately trying to reach 4 and I was supposed to stay awake. Glad I did as no way did I want to see the kitchen knife and pliers in use . He also proceeded to apologise as he was in a desperate rush to be elsewhere after my installation, me falling asleep had taken his mind off shaving my chest hair. He thought about this whilst driving home as it was a rather large clear adhesive pad he had stuck over the wound and of course you can’t just rip it off a fresh Hickman install like it’s leg waxing. 😮
Best wishes, Mike
Keith,
Well you’re a bit of a Superman in my books bouncing back so quick. You also just put a smile on my face by reminding me of getting back on my feet and feeling brave enough to take my Triumph Speed Triple out for a ride. 🙂 Do you get up the Ace Cafe for Classic Car night?
Mike
Hello Keith,
Just read through your posts on this thread, do you have a big S tattoo’d on your chest? 🙂 I struggled a lot longer recovering from my SCT and I was 42 at the time. I did exactly 21 days in The Marsden, the home option wasn’t offered so must be something new since 2007.
Mike
PS Is that a Stag or PI you are leaning on in your avatar photo?
Hell Vicki,
Let’s hope Colin’s remission continues and the treatments also keep improving as they have over the years. I was told the average age for MM was 70 in 2007 and to have it at my age put me in a very small minority of sufferers. They took enough stem cells at the harvest for another transplant and the way things are going they might go past the sell by date!
I signed up for the Myeloma IX Trial as I decided that if it was going to get me then hopefully someone else might benefit from the information and if it saved or prolonged at least one life it was worthwhile. I was expecting to have a regular bone marrow biopsy and bone trephine plus all manner of tests but it was just blood, urine and a quality of life form every couple of months. Nicky told me last week that the trial has now ended and there will be a follow up quality of life survey but it looks like I will miss the catchment dates. What a relief, those tick boxes on the forms were very taxing!
Where did Colin have his SCT?
Mike
That’s a question I have never considered, I will have to ask next time I go. The blood pressure tablets were prescribed by my GP on the request of Dr.Macanjuola a couple of years ago to relieve pressure on the kidneys if I remember correctly. My weight and fitness probably does not help as I’m around 18.5st. I was playing a bit of paintball (yes, big kid) before the BP started and was probably a bit fitter than I am now and a bit lighter too.
Mike
Hi Rebecca,
I usually see two specialists when I attend St.Hellier, any one of the Haemotology team and one of the Nephrologists, Dr. David Macanjuola. We were discussing my creatinine level yesterday and over the past two years it has been trending up slightly but has been fairly consistent since the SCT between 180-210. I have just tried viewing the results online to see the latest results and cannot gain access.
I follow no special diet, I just eat and drink normally including alcohol as I did before diagnosis. I did see a dietician back in 2007 but if I had to follow her suggestions I probably would have hung myself by now, in fact looking back I remember thinking she was an Anorexia patient when she walked in. When I first saw Dr Macanjuola some years back he asked if I was drinking plenty of water so I told him I was trying to drink over 3 litres a day which I was struggling with, he just laughed and said I was at risk of drowning! He suggested I drink when I felt thirsty and not try to beat the 3 litres and I have done so ever since.
I think (hope?) the slight trend upwards in the creatinine may be due to the blood pressure tablets, I was also suffering with some oedema on my legs and take a tablet for that too.
Mike
Hello Richard,
I hadn’t looked at it that way, perhaps you’re right. The only contact I have with other patients is at St.Hellier and because I go every 3 months I don’t often see the same people as they might be on 2 monthly visits. Come to think of it I only saw one member of staff yesterday that was there when I had my treatment, Nicky the trial co-ordinator!
I joined the site a while ago and did read some posts but I was reminded of the early days of diagnosis when we were reading up on all the information available but had to stop as it was giving us more to worry about. Maybe yesterday I was burying my head in the sand by not talking to the others, not wanting to hear something I could start worrying about. One recurring memory I have is a young chap in the Marsden who came in for a second SCT and said that they only last up to 7 years which is where I am now.
This might make you laugh, I had to Google ‘SCT’ after reading through some of your posts as I sat staring at at it wondering if it was some new treatment! Then again, I do remember having to ask what ‘DOB’ was on a form at college, what a muppet.
Mike
