Time to bring you up to date with 'wotz been happnin' over the past few weeks, since I received my biopsy results.Well, I had my 'final' consultation up at Hammersmith a couple of weeks ago. I say final, but I still ultimately remain under their supervision and will be back up there for my one year post transplant review in January. Until then all ongoing blood tests etc will be done under the care of my haematologist at Kingston hospital.
As for the consultation, we discussed the biopsy and PET scan results and the options available to me moving forward. There were only really two, either to start with a 'maintenance' therapy or to follow a more passive watch and wait policy. Given my current blood results and the fact that I have a good quality of life (even though I haven't won the lottery yet) Len, myself and the consultant all agreed that a more passive stance would better suit my current situation.
Maintenance therapy has its own side effects, which would definitely have a negative impact, whether large or small, on my lifestyle. It would mean taking a low dosage of either Thalidomide or Revlimid, the only two remaining drugs (I've already had a course of Velcade) currently approved in the UK for the treatment of multiple myeloma. Using them as a maintenance drug would potentially mean they could not be used when (yes, when) I relapse....unfortunately your body eventually becomes somewhat immune to the effects of each of these drugs. Another consideration is that there is currently no scientific evidence to confirm whether taking a maintenance drug prelongs remission.
Anyway, decision made, I'm taking the monitor route for the time being. I'll continue to have monthly blood tests for a period of time until I eventually move to needles every three months, a necessity to ensure my blood counts remain stable and most importantly, to keep a close eye on my paraprotein levels, the indicator of how active my disease is.
So, what else is new? Well, yesterday was my first day back at work since the end of November. Weird....like your first day back at school after summer holidays....not that I've done that for a while!! It was strange to meet up with colleagues that I'd only had contact with via Skype for such a long time....even walking into the building felt a tad surreal. Tiring as well. I was only in for half a day, but still needed to rest in bed for a couple of hours when I got back home.....maybe that's just an age thing!! Anyway, as my consultant has said, I need to take things easy to begin with....he doesn't want to see me back in hospital with shingles again. It's funny, my head is telling me I'm fine, but it's going to take a good year before my body catches up with the idea.
Anyway, just to finish with, I have been thinking a lot recently about the amount of love and positive vibes I've received from all my close friends, relatives and family since my diagnosis this time last year. I'm amazed by the support you've all shown and the patience and understanding my wife and son have given me. Even now as I write this I'm starting to cry and I really can't put into words just how much you've all meant to me and helped me through this difficult time....even though you never clubbed together to buy me that one million pound Koenigsegg...you're forgiven!!
Wednesday, 19 June 2013
Tuesday, 28 May 2013
3-4%
I'm going to make it brief. I've just received some fantastic news.....my 100 day post transplant bone marrow biopsy showed only 3-4% plasma cells (malignancy). As a quick reminder, that's down from 25% at diagnosis and 10% pre transplant. Lots of tears (of joy and relief) and you can be assured that Len and I will be cracking open the Champagne tonight!!
Sunday, 26 May 2013
Back Home Again
Back at home again, after five days in the big H. The blisters on my back had started to heal, so I was sent packing on Thursday evening. I'm still on high dose anti viral tablets for the next week, by which time hopefully the blisters will have fully scabbed over (hope you're not eating whilst reading this!!). The right side of my torso is still very sensitive and a little painful at times, but there have been no new outbursts of blisters and the doctors have said I was lucky to catch it early and start treatment so soon.
As far as my biopsy results are concerned, still no news from the pathologists lab...will hopefully hear something next week. I'm starting to get impatient, it's been over three weeks since the biopsy and I usually get the results after a week and a half. Anyway, for the time being I will live off the positive results from my PET scan. It showed no new tumour sites and confirmed the plasmacytoma on my sternum has dramatically reduced...some great news!!
So, getting back to the shingles...as I said previously, I'll take it as a 'gentle reminder' from my body that I am still only four months out from a stem cell transplant. Out I go to cut the grass then!!
As far as my biopsy results are concerned, still no news from the pathologists lab...will hopefully hear something next week. I'm starting to get impatient, it's been over three weeks since the biopsy and I usually get the results after a week and a half. Anyway, for the time being I will live off the positive results from my PET scan. It showed no new tumour sites and confirmed the plasmacytoma on my sternum has dramatically reduced...some great news!!
So, getting back to the shingles...as I said previously, I'll take it as a 'gentle reminder' from my body that I am still only four months out from a stem cell transplant. Out I go to cut the grass then!!
Sunday, 19 May 2013
The Return of the Chicken Pox
Well, just when I thought there was nothing of interest to tell you, other than my new crop of 'baby down' soft hair, and me becoming the family lap dog of choice as a result, it all kicks off.
I popped into town with Marcus yesterday morning to buy him a new pair of astro turfs from everyones favourite shop, Sports Direct, and all seemed fine. Got back home and asked Len to look at what I thought might be a scratch or a bit of post teenage acne on my back. She found a clump of blisters, which obviously set alarm bells ringing, so after a chat with the on-call haematologist at Hammersmith, she decided I needed to get to A&E. So, after spending what felt like seven hours (oh, hang on, it was seven hours) at Hammersmith A&E yesterday, I was admitted to hospital with shingles. I'm now back in the same isolation ward where I had my transplant, and on an antiviral IV. They're obviously very keen to get on top of it quickly, as I'm still very much immune deficient only being four months post transplant. I'm in good hands and could be here for a week or so, depending on how well I respond to the drugs. Hopefully we've caught it fairly early, which helps alot with the treatment of shingles. What triggered it.....who knows....just pushing things a little too hard at this stage perhaps. It's frustrating, my head's telling me I'm fine and can return to a normal lifestyle.....maybe this is my body just telling me to calm it a little. As a good mate said, make like the rabbit in the Cadburys caramel advert... just take it easy!
Anyway, just to top off what was a thoroughly shite day, what more could one wish for other than a parking ticket......I am living that dream baby.....well, living the dream minus £50 anyway!!
I popped into town with Marcus yesterday morning to buy him a new pair of astro turfs from everyones favourite shop, Sports Direct, and all seemed fine. Got back home and asked Len to look at what I thought might be a scratch or a bit of post teenage acne on my back. She found a clump of blisters, which obviously set alarm bells ringing, so after a chat with the on-call haematologist at Hammersmith, she decided I needed to get to A&E. So, after spending what felt like seven hours (oh, hang on, it was seven hours) at Hammersmith A&E yesterday, I was admitted to hospital with shingles. I'm now back in the same isolation ward where I had my transplant, and on an antiviral IV. They're obviously very keen to get on top of it quickly, as I'm still very much immune deficient only being four months post transplant. I'm in good hands and could be here for a week or so, depending on how well I respond to the drugs. Hopefully we've caught it fairly early, which helps alot with the treatment of shingles. What triggered it.....who knows....just pushing things a little too hard at this stage perhaps. It's frustrating, my head's telling me I'm fine and can return to a normal lifestyle.....maybe this is my body just telling me to calm it a little. As a good mate said, make like the rabbit in the Cadburys caramel advert... just take it easy!
Anyway, just to top off what was a thoroughly shite day, what more could one wish for other than a parking ticket......I am living that dream baby.....well, living the dream minus £50 anyway!!
Saturday, 4 May 2013
Last Thursday
Last Thursday....not a day that sneaks its way into my top 10 days of all time. I had my three months post transplant bone marrow biopsy in the afternoon. Obviously, if I could share that experience with you I would.....I'm thoughtful like that!! I've got an appointment with my consultant on Tuesday 14th May, so will get the results and be told whether I require any follow up 'maintenance' treatment at that time.
As I said earlier, not the best of days last Thursday. I received my paraprotein results in the morning from my last set of blood tests taken on 23rd April. The paraprotein is a good indicator of the level of disease, and mine has gone from 13 pre transplant to 9. I was expecting a bigger drop....not based on any facts, just the hope that the paraprotein would have reduced by at least 50%. I was really upset and worked up.....I've gone through all this...for what? I don't know....maybe I'm too positive at times and I just set myself up for a big fall. I don't know.
What proved to be good in the end (just as Len had told me) was the fact that I could talk to my haematologist about the blood results prior to my biopsy. He's a very positive and approachable guy and really helped put my mind at ease. As he said, the key with this disease is stability, not absolute values. Having a stable plateau moving forward is what we need, even if that level is 9. My calcium levels are fine, kidney function good and my sole plasmacytoma (tumour) has significantly reduced....all positive signs that need to be taken into account. So, not the best blood results, but lets wait and see what the bone marrow results are like, and as my consultant says, I just need to get back to living a more normal life. San Miguel and a few rounds of golf it is then!!
As I said earlier, not the best of days last Thursday. I received my paraprotein results in the morning from my last set of blood tests taken on 23rd April. The paraprotein is a good indicator of the level of disease, and mine has gone from 13 pre transplant to 9. I was expecting a bigger drop....not based on any facts, just the hope that the paraprotein would have reduced by at least 50%. I was really upset and worked up.....I've gone through all this...for what? I don't know....maybe I'm too positive at times and I just set myself up for a big fall. I don't know.
What proved to be good in the end (just as Len had told me) was the fact that I could talk to my haematologist about the blood results prior to my biopsy. He's a very positive and approachable guy and really helped put my mind at ease. As he said, the key with this disease is stability, not absolute values. Having a stable plateau moving forward is what we need, even if that level is 9. My calcium levels are fine, kidney function good and my sole plasmacytoma (tumour) has significantly reduced....all positive signs that need to be taken into account. So, not the best blood results, but lets wait and see what the bone marrow results are like, and as my consultant says, I just need to get back to living a more normal life. San Miguel and a few rounds of golf it is then!!
Friday, 19 April 2013
Sunscreen
Well, after nearly two months as the proud owner of a third nipple, it was finally removed yesterday. If the truth be known, the Spider Sisters never did get back to me reference my offer to join them, so things weren't looking particularly good for a new career on the stage anyway!!
It turned out to be another positive NHS experience, in all its administrative glory. Arrived at Hammersmith for the minor operation at 07:30 (the procedure was planned for 08:00), the cuff (aka third nipple) was eventually taken out at 16:30. Eight hours of waiting around in a hospital full of sick people when you've got a weakened immune sysytem....just what the doctor ordered!!
Anyway, it's out now, so I'm really just waiting for the bone marrow biopsy, which will probably take place at the end of next week or beginning of the following. This aligns with 'day 100', which is typically when my paraprotein level will be at its lowest post transplant, so should give a true picture of how successful the transplant has been. The results generally take around a week, so I should know the score around the beginning of May, at which point my consultants will be making a decision on future treatment.
As an aside, I've made an interesting discovery over the past weeks. Having been invited around to some good friends a few weekends ago (my first 'post transplant' social), we decided to have a drink out on their terrace, taking in the first evening sun of the year. I hadn't put any sunscreen on, but after half an hour, decided to slap a bit on knowing my post chemo skin would be very sensitive. The following morning my face was completely red, itchy and puffed up around my eyes. I assumed I'd got burnt during my brief exposure to the 'fierce' early April sun the previous night. However, last weekend I went to watch Marcus play football, and seeing as it was partly sunny out, put on some factor 50 and wore a hat to further protect my face. I was only outside for a little while but sure enough the following morning my face was a mess....yep....even more than usual!! Anyway, to cut a long story short, after several 'experiments' it appears my skin is far more sensitive to sunscreen than it is to the sun! Could make life interesting later in the year, though hopefully by then I'll have hardened up a bit.
Other than that, my blood results remain fairly stable, I'm getting stronger and fitter as the weeks pass and my hair continues to grow....though apparently not at the rate required to avoid the 'wig cap' that Len and Marcus kindly purchased for my 46th birthday last week. How thoughtful!!
It turned out to be another positive NHS experience, in all its administrative glory. Arrived at Hammersmith for the minor operation at 07:30 (the procedure was planned for 08:00), the cuff (aka third nipple) was eventually taken out at 16:30. Eight hours of waiting around in a hospital full of sick people when you've got a weakened immune sysytem....just what the doctor ordered!!
Anyway, it's out now, so I'm really just waiting for the bone marrow biopsy, which will probably take place at the end of next week or beginning of the following. This aligns with 'day 100', which is typically when my paraprotein level will be at its lowest post transplant, so should give a true picture of how successful the transplant has been. The results generally take around a week, so I should know the score around the beginning of May, at which point my consultants will be making a decision on future treatment.
As an aside, I've made an interesting discovery over the past weeks. Having been invited around to some good friends a few weekends ago (my first 'post transplant' social), we decided to have a drink out on their terrace, taking in the first evening sun of the year. I hadn't put any sunscreen on, but after half an hour, decided to slap a bit on knowing my post chemo skin would be very sensitive. The following morning my face was completely red, itchy and puffed up around my eyes. I assumed I'd got burnt during my brief exposure to the 'fierce' early April sun the previous night. However, last weekend I went to watch Marcus play football, and seeing as it was partly sunny out, put on some factor 50 and wore a hat to further protect my face. I was only outside for a little while but sure enough the following morning my face was a mess....yep....even more than usual!! Anyway, to cut a long story short, after several 'experiments' it appears my skin is far more sensitive to sunscreen than it is to the sun! Could make life interesting later in the year, though hopefully by then I'll have hardened up a bit.
Other than that, my blood results remain fairly stable, I'm getting stronger and fitter as the weeks pass and my hair continues to grow....though apparently not at the rate required to avoid the 'wig cap' that Len and Marcus kindly purchased for my 46th birthday last week. How thoughtful!!
Monday, 18 March 2013
Moisturising
Well, it's been just over two weeks since my last update.....doesn't time fly when you're having fun!! I was up at Hammersmith last Tuesday for blood tests and a review with my consultant. Bloods are heading in the right direction and in some cases, though still low, are within the 'normal' range:
WBC 5.9 (normal range 4.2 to 11.2)
RBC 3.4 (4.2 to 5.3)
Neutrophils 3 (2 to 7.1)
Platelets 206 (130 to 370)
Hb 11.7 (13 to 16.8)
In fact my consultant is no longer 'concerned' about my blood counts and is now focusing on my paraprotein level. As I've previously said, the real success of the transplant won't be known until I get the results of my next bone marrow biopsy, three months post transplant....so around mid April. That's getting closer and my mind is definitely starting to shift its focus from 'post transplant recovery mode' to 'how successful has this transplant really been mode'...and unfortunately this does at times bring negative thoughts to the surface. I do try and keep positive, but inevitably the shield does slip sometimes.
So, what else is new? Well, still on the medicals, I've started my new course of antibiotics. No allergic reaction, which is good news as I'll be on these for the rest of my life. They're supposed to slow down the spread of any infection, should I get one, as apparently the spleen is damaged during the transplant, and part of the spleens normal function is to help fight infection. The itchy skin continues and boy am I getting fed up with having to moisturise my entire body twice a day. According to my consultant, this is likely to continue for a while as the high dose chemotherapy attacked the skin as well as my bone marrow.
On the plus side, my hair has started to grow back over the past few weeks, though it's weird seeing dark Professor Robert Winston like eyebrows sprouting, since I'm used to being blond. Unfortunately the new body hair hasn't aided the moisturising process either!!
My taste has pretty much returned to normal now (I can finally savour a beer) and despite the fact I'm still not allowed takeaways, I've put on more weight....not back to my full fighting weight, but getting there. My energy levels and overall fitness are also improving as my red blood cell count picks up. All good stuff, but the consultant has advised me to steer clear of pubs, restaurants, public transport.... in fact anywhere where I'd mix with lots of people, until at least three months post transplant.
Marcus and I have also been busying ourselves building a radio controlled off road car over the past few weeks. We took it out for its maiden voyage yesterday down at the park... great fun...pretty damn quick as its got a fairly powerful fuel engine.
Anyway, I'll leave it at that for now. As you've probably noticed, I've started to reduce the number of blogs I write. Whilst things are stable I'll probably only update it every few weeks, but I promise, should anything interesting happen, like I get pregnant, my third nipple gets removed or get some significant news on my progress, I'll keep you all updated!
WBC 5.9 (normal range 4.2 to 11.2)
RBC 3.4 (4.2 to 5.3)
Neutrophils 3 (2 to 7.1)
Platelets 206 (130 to 370)
Hb 11.7 (13 to 16.8)
In fact my consultant is no longer 'concerned' about my blood counts and is now focusing on my paraprotein level. As I've previously said, the real success of the transplant won't be known until I get the results of my next bone marrow biopsy, three months post transplant....so around mid April. That's getting closer and my mind is definitely starting to shift its focus from 'post transplant recovery mode' to 'how successful has this transplant really been mode'...and unfortunately this does at times bring negative thoughts to the surface. I do try and keep positive, but inevitably the shield does slip sometimes.
So, what else is new? Well, still on the medicals, I've started my new course of antibiotics. No allergic reaction, which is good news as I'll be on these for the rest of my life. They're supposed to slow down the spread of any infection, should I get one, as apparently the spleen is damaged during the transplant, and part of the spleens normal function is to help fight infection. The itchy skin continues and boy am I getting fed up with having to moisturise my entire body twice a day. According to my consultant, this is likely to continue for a while as the high dose chemotherapy attacked the skin as well as my bone marrow.
On the plus side, my hair has started to grow back over the past few weeks, though it's weird seeing dark Professor Robert Winston like eyebrows sprouting, since I'm used to being blond. Unfortunately the new body hair hasn't aided the moisturising process either!!
My taste has pretty much returned to normal now (I can finally savour a beer) and despite the fact I'm still not allowed takeaways, I've put on more weight....not back to my full fighting weight, but getting there. My energy levels and overall fitness are also improving as my red blood cell count picks up. All good stuff, but the consultant has advised me to steer clear of pubs, restaurants, public transport.... in fact anywhere where I'd mix with lots of people, until at least three months post transplant.
Marcus and I have also been busying ourselves building a radio controlled off road car over the past few weeks. We took it out for its maiden voyage yesterday down at the park... great fun...pretty damn quick as its got a fairly powerful fuel engine.
Anyway, I'll leave it at that for now. As you've probably noticed, I've started to reduce the number of blogs I write. Whilst things are stable I'll probably only update it every few weeks, but I promise, should anything interesting happen, like I get pregnant, my third nipple gets removed or get some significant news on my progress, I'll keep you all updated!
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