David,
Thanks for the reply. I’m not sure what it is but I’m having a CT Scan tomorrow, which will hopefully give me an answer on what’s going on, or at least, reassure me, that nothing serious is causing it…either way I’ll know in a few days.
I’ll keep all posted if I get an answer.
Kind Regards
Scott
Gordon,
I’m glad to hear, because I’m booked on the Manchester info day in November. I have booked before but never attended for the fear of finding out too much info that could possibly scare me for the future. However, I thought it best to attend and find out for for myself.
Looking forward to it now.
Kind Regards
Scott
I agree with louishenry. I think, I hope, that Celgene will reconsider their pricing to the NHS now that they have told them they will be cancelling the drugs. Surely having spent all that money developing the drug they would rather get some return on their investment with a lower price point than nothing at all if they can’t supply!
I have read an article elsewhere, where the CEO of Celgene UK is considering pulling out of the UK with clinical trials etc because of this decision. He sounds like he wants to take his ball home. I reckon it’s all posturing…hopefully they will see sense and come back to the table to discuss. After the all the UK is a large market and who wouldn’t want a piece of that business if you were a Pharma company?
The cynic in me believes that large Pharma companies don’t want a cure…where’s the money in that? I believe they want to supply a drug, paid for by the NHS, which you would need to take for the rest of your life, which will help manage the disease…that’s the where the money is, on the constant comeback!
I hope I’m wrong, I really do, for all our sakes.
ps Sorry for the rant
Hi Fiona,
I’m suprised at how well I feel actually with regards to the Allo, however, I believe its generally well tolerated especially in younger patients (I’m 42) and I think this this is largely due to the RIC (Reduced Intensity Conditioning) regime which I chose to have. Mine is the SEATTLE PROTOCOL and consists of 3 x days of Fludarabine (chemo I.V infusion) which only takes approx 30 mins each day then a days rest then TBI (total body irradation) which I had at Chrsities in the morning which took approx 30 mins and then infusion of my Donor Stem Cells in the afternoon back at Manchester Royal Infirmary. This was then followed by 4 x shots (every other day) of Methotrexate (chemo I.V) which takes 5 mins into the canular. However I only had 3 x shots. They cancelled the last one because I started with Mucosistis (sore mouth) and which I still have now but its much better than it was.
I am +20 days after transplant today and I have been seen as an outpatient right throughout my treatment including the conditiong regime, which has been great because I can rest at home and sleep in my own bed! As long as any symptoms are manageable, your temp is under control and you don’t feel too unwell as per the guidelines, then in my case they are happy for me to be an outpatient. I also live quite close to the Hospital (approx 10 miles) and can attend at short notice should any complications arise.
The issues I have had so far is tiredness from the TBI and Chemo, a little sickness occasionally (but that as been kept under control with anti sickness tablets), a couple of days of loose bowel movements and the sore mouth which I have probably had for a couple of weeks now but it seems to be subsiding. I just use the Difflam mouthwash prescribed a few times a day. The only other thing is that I picked up a cold and cough which I have since last Friday but again that seems to be getting better now.
I have no GvHD issues so far, however its early days yet so I’ll just see how it goes. My Doctor says that I may not get any GvHD until post 100 days but you never know, everyone is different and it could change at any time.
I got a MUD (matched unrelated donor) from the Anthony Nolan Charity because my Brother wasn’t a tissue type match. My Donor was a 10/10 tissue type match, CMV Negative (just like me) and even is the same blood type, although I believe the blood type match doesn’t mattter.
My Doctor/Consultant listed the many problems that could occur with this procedure to ensure that I was aware of the potential dangers when I signed the consent forms, however, as I say, luckily I have not been affected too much so far and expected to be worse than I am. I definitely feel better overall than I did when I had my Auto Transplant and I think that is largely down to the fact that the Chemo for the Allo works differently and is not as strong as the Melphalan (high dose chemo) used when I had my Auto so my Blood Counts have not crashed this time, hence the reason I feel ok.
I did get the offer of a Myeoblative or Full Allo and did what research I could. The Myeloma helpline was helpful and useful and they sent me some links to info on the web even though some of it was medical and difficult to understand in parts. In my case, I thought that it was possibly too risky to undertake the Full Allo because of the high mortality rates compared with the RIC Allo. Unfortunalty there is not a great deal of data available for Myeloma patients and Full Allo outcomes because it is quite rare in younger patients and only younger pateients can undertake the procedure. I beleive the cut off age is between 45 – 50 years old for Full Allo but I suppose that depends on the fitness of the patient.
I decided to have the RIC Allo in tandem with my original Auto (approx 4 – 6 months after) to hopefully get a lenghthy remission. I then will put my faith in Medical Science and the good work that Myeloma UK do to hopefully help find a solution longer term. I also believe that it is possible to have another Auto if/when I relapse in future and Who knows what treatments they will have to fight Myeloma over the next few years?
Sorry to harp a on a bit however I thought it best to give you the full story and although its a personal choice I wouldnt hesitate to opt again for the same. Just ensure that you get the correct information and take time to make your own informed decision. There is actually a facebook page for pateints who have had or considering Allogeneic Transplants run by a lady called ‘Jet Proppelled’ who has undergone the same procedure and has a wealth of knowledge compared to me who is a relative novice.
I hope this helps and all the best for the future.
Kind Regards
Scott
Lisa,
I too had pain, bad pain before we went away on Holiday and I even visited the Physio a few times hoping that they could cure me of what we thought was ‘muscle pain’! Little did I know then what was to come. It was the worst holiday I will ever have, however if I hadn’t of gone then I may not have been diagnosed as quickly as I could have been…my wife believes it was fate!
Although I am in remission and have been for a good while, I am just undergoing the RIC Allo to hopefully kick it into touch for a lengthy remission. I am transplant day +19 and so far things are going pretty well.
I too can’t wait to get over this procedure, get well again and then look forward to getting out and about and start to exercise. My back is really good now and for the first time in around 12 months I’m looking to the future and making plans with my family.
Kind Regards
Scott
Hi Lisa,
I was diagnosed last year (nearly 12 months ago) and I was quite bad from the off with collapsed vertebrae which happened whilst we were on holiday abroad. In this respect, we really didn’t have a choice because they knew something was up. My kids are older and were 15 and 12 at the time and we decided to tell them everything from the very beginning, however, we did debate at the time what they should know so we kept it simple. The kids have been great and the Schools were very supportive as well because we informed them in case they saw in any changes in their behaviour. Luckily for us, they have handled it really well and have just got on with things. My Son wears his Orange wrist band 24/7 in support of Myeloma and never takes it off even when he plays Rugby or takes a shower!
I believe that as long as the kids are old enough that they should be told, however, I can fully understand anyone’s right and need to protect their kids from the possible grief and upset that may come with that difficult conversation.
Kind Regards
Scott
Mavis,
Thanks for the reply. Yes, my Wife and I are part of the Facebook Page for Allogeneic Transplants but I thought I might try my luck on here.
My Mucositis has lasted approx 7 days so far, however, luckily now seems to be subsiding. My Seattle Protocol detailed 4 x small infusions of Methotrexate of which I had 3. They cancelled the last one due to my sore mouth.
The good thing is that +14 days, I’m not suffering from many other symptoms and I’m keeping all fingers crossed that this continues.
Kind Regards
Scott
Richard,
That’s great news. A real uplifting story that helps keep others like me going and gives them hope. I was diagnosed at 41 last August, recently had my Auto (Feb) and I’m due my tandem RIC Allo at the beginning of June. Luckily I have a fully matched unrelated donor and I’m hoping everything works out and I don’t get too much GvHD, but enough to keep the MM at bay. Ten years in remission is superb and I would take that now if it could be offered to me!
Keep up the good fight!
Regards
Scott
Hi Angela,
I went back to MRI on Wednesday and my Neutrophils had risen slightly but not by much, they were up to 0.83. I too had another injection and I have to go back on Monday for another quick review. I feel pretty good though and I have started doing things like walking the dog and I even tidied the garden yesterday and cut the lawn, however I was tired afterwards. I have had no sickness feelings for a couple of weeks now, however I have had a bit of a cold which seems to be on its way out thankfully.
I am planning on a ‘phased return’ to work soon (just a few mornings a week) initially and then I’ll see how I go. I also had discussions with the Doctors about a possible ‘Mini Allo’ Transplant within the next few months, which if I am honest I could do without so soon after this transplant but it will possibly give me a much longer remission when done it tandem with the ‘Auto’ that I have just had and is the best option really for someone of my age.
I have also lost approx 1 and 1/2 stones since being first diagnosed but this is welcome because I was too heavy also.
I hope Graham gets his appetite back soon and then his strength should return. The one thing that I do know (although I’m still a novice when its comes to the whole Myeloma thing) is that everyone’s experience is different and the disease affects everyone differently. So with that in mind Graham shouldn’t get too disheartened if he seems to be taking slightly longer than he expected to get himself right again and back to normal. I have been really frustrated in the past few months especially when I could hardly move with my back however you just have to roll with it and it will all happen soon enough.
Best Wishes, keep positive and we’ll be in touch soon.
Cheers
Scott
Hi Angela,
I have been ok thanks. I am still a little tired however have started to do more this last few days or so. I too went to MRI on Friday for a check up. My Hemoglobin and Platelets were more or less back to normal however my White Cell count had dropped. My Neutrophils were 3.53 the day I left Hospital 11 days ago however were only 0.79 on Friday. The Doctor said that this can happen sometimes because the levels can be elevated with the Growth Hormone Injections whilst in Hospital. I had another injection on Friday before I left and then I have to return next Wednesday to check if the White Cell count is rising of its own accord.
I’m sorry to hear about Graham’s work situation, hopefully, all will work out well for him but your right the most important thing is getting him well first.
Give Graham my regards and tell him to keep strong.
I’ll post again soon.
Cheers
Scott
Finn,
Thanks for the reply. I never thought of that, maybe it is something to do with the Melphalan. It does ease with painkillers however it’s always there, like a dull ache in my arm / shoulder all the time.
I’m due back at the Hospital on Friday so I’ll speak to them then about it.
Best Wishes
Scott
Hi Angela,
I got home last night. I spent a total of 10 days in Hospital (1 night after the Chemo – 11th Feb) and then was I treated as an outpatient until being admitted on the 16th Feb. I then spent a further 9 nights in Hospital until coming home yesterday. The first night I was in a private room but when admitted I went on to the ward. Bed 24 and was roomed with 3 other people.
I tolerated the whole process pretty well really and went into Hospital with the mindset that I could be really ill and therefore anything less than that would be a bonus. My observations were pretty good throughout my stay. My Blood pressure was normal, No Temperature and 02 Saturation was always high. The only slight issue I had was an elevated Heart Rate for a about 3 days whereby it was up to approx 100 bpm where typically at rest I can be anywhere between 55 and 70 bpm.
I had no mouth ulcers, however, did have a swollen tongue which prevented me from chewing properly for a few days and apart from feeling sickly occasionally (however this was controlled with anti sickness tablets) having a poor appetite, and feeling very tired at first until my white counts started to rise and then I felt a little better, I have come through it all pretty much unscathed. It will just take time at home now to recover to full strength and tiredness will be my biggest obstacle going forward for a few weeks. However, now that I am home, sleeping in my own bed and eating proper home cooked food, hopefully it shouldn’t take too long to get back to normal.
As you say the Consultants, Nursing Staff and all the other ancillary Staff which work on Ward 44 are absolutely superb. I would not hesitate to recommend them and could not think of better place to be treated.
Now that it is done, I’m thinking about Summer and getting out and about and starting to enjoy life again. Its been Six Months since my diagnosis and I have come through it all really well, its been tough at times but with the support of my Family, Friends, Employer and the brilliant Staff at Manchester Royal who have got me to the point where I am today, its all been worth it.
Give Graham my best wishes and we’ll no doubt be in touch again soon.
Onwards now!
Cheers
Scott
Richard,
Thanks for the reply, appreciate the support.
Cheers
Scott
Hi Angela,
I should have gone in today (10th Feb) but had a phone call from the Ward saying that because of lack of beds currently they want to treat me as an ‘outpatient’ for a few days. This is the same situation as your Graham by the sounds of it.
I’m in tomorrow all day for the Melphalan and Fluids and then home and then return on Wednesday for the Stem Cell Infusion and then home again. Not sure when I’ll be admitted at the moment but they think it will be Friday. Apparently my Blood Count wont ‘crash’ for a few days hence the reason this is possible. How’s your Graham been feeling the last few days? Has he gone in yet as planned?
I’m happy to be at home for the moment and I have been told that I must watch my temperature etc and call the Ward if I feel unwell.
Cheers
Scott
Hi Angela,
Those dates make sense to me now on my list. I'll have cyclo priming (injections) between 6th & 12th and then on 13th Jan I'll have Virology blood test and then into Hospital on 14th for Stem Cell Collection. As you say this will depend on how many they collect each day and make take a couple of days or so to collect enough.
I was under the impression I would be straight in for SCT after this however maybe not. I finish my 4th cycle of CTD on 24th November so I would be surprised if I have no further treatment until 4 to 6 weeks after Stem Cell collection. Even though my Lambda levels were basically Zero after the 3rd cycle of CTD.
However I'll just go with the flow and do as the Doctors say and trust in them. The main thing is that we get treated, the fact that it's Xmas is secondary in the grand scheme of things.
There will be other Christmases…many more to enjoy!
Best wishes
Scott