No Jokes- this is the real deal

Just over a year ago I had just finished ‘salvage’ chemotherapy – “ESHAP” aimed at puttting my relapsed Hodgkin’s Lymphoma into remission. I had a stem cell harvest which yielded enough stem cells for several transplants (not that that was required but it felt good anyway!) I then had a CT scan prior to transplant that should have confirmed remission; and the next step to transplant and subsequent, hopefully, cure. However, that scan showed that my disease had grown despite chemo and was therefore now labeled as relapsed AND refractory, not good.

A consultation following the results gave me options, none of which at the time seemed to me ‘worth’ the risk and I took the option of no more treatment. At that point  in view of my decision I was given an estimated life span of six months. I have to point out that this was actually not a hard decision to make, I knew in my heart that I would rather have six good months of health and happiness than several years of feeling crap and debilitated.

Six months, and much fun passed, and I was still alive and feeling pretty well although I was now aware of  the disease having progressed. It was at this point I decided to try one of the options outlined six months ago, Brentuximab a lymphoma targeted chemo, which at the time I believed to give me some extra time - average 10 months.

The treatment, Brentuximab, started in February this year and had pretty much immediate results obvious to me that were then confirmed after 6 cycles by PET scan showing complete remission. This is what I had been aiming for last year and so I was now in line for a stem cell transplant.

However, because my lymphoma had been resistant to the first line of 'salvage' chemo my consultant advised referral to a larger centre who could offer a donor transplant, rather than my own stem cells, that  may offer a greater chance of survival, although also a greater chance of death due to procedure. Having only just got my head round having any kind of transplant I was reluctant to have this consultation but my doctor convinced me that it was for the best in order to make a fully informed decision that I discuss my situation and options with an expert, ie someone who deals with donor transplants every day.

So I have now had the consultation with the expert. To put it simply, a donor transplant does give better stats of being alive in 5 years. However the price is high, it also carries a significant risk of long term complications, some  are ‘mild’ and some, although much less likely, quite bad, well really bad. Also it would mean 3 months away from home with a team I don’t know and who don’t know me. Plus a longer recovery time.

Apparently because the lymphoma was quite ‘late’ in relapsing the first time (nearly 5 years) plus my ‘break’ in treatment (June 2011 to Feb 2012), plus the fact it was also resistant to the ESHAP this could mean that it will be a real MOFO to cure and therefore if one were to edge  (or hedge?) one’s bets would be let's blast it with the slightly riskier treatment……..

Dr Expert did concede that most of the time the advice he would give patients looking at both options would be straight forward but with my case and unusual disease progression etc he could not say definitely one way or another.

So, to have my own stem cells transplanted ‘locally’ would mean statistically less chance of survival at 5 years, but also less long term effects and less recovery time. If I do relapse then I have the chance to have a donor transplant later, although it wouldn’t be as statistically favourable as having at first line treatment.

If I go stats alone, this choice may be easier - ie donor is best chance of cure - but I am already lterally living proof that stats aren't everything, or I wouldn't still be here!

So that’s that! Go me! This is the hardest decision I have ever made! Harder than saying no more! Which btw is also an option! But with a very low chance of seeing 5 years!

It’s taken me nearly 2 weeks to gather my thought about this so don’t worry it you can’t formulate an opinion, although all opinion greatfully appreciated J

xxx

Brentuximab number 10 cancelled

After a quick prod of my armpits and groin with no freaky nodes to feel my Dr asks;

"Any drenching night sweats?"

"No"

"Unexplained weight loss?"

"Ha! I wish"

"No recurrence of itching?"

"Nope"

"So everything's ok then?"

"Well, yeah I am fine. I do have constant pain though, kind of feels in my bones" He looks concerned;

"Does it stop you sleeping?"

"No, it's really not that bad, it doesn't stop me doing anything, it's just wearing because its pretty much constant. Apart from that as I say I'm fine, oh well my hair's falling out but hey I have got off lightly so far it's been 6 months of treatment."

"Ok , good...."

"Oh and I'm going deaf......" discussion follows re degree of deafness, conclusion - we won't worry about that for now.......
"yes so really I am ok, oh but I am losing my memory"

Now I have done it! Now he is definitely concerned. I try to dumb it down but it's out there. Clearly it's a cognitive change which in other chemo would probably be put down to 'chemo brain' but with Brentuximab of course there is this weird madness virus to look out for. I didn't remember to tell him I am also having trouble finding words and expressing myself but then again that is very similar to my first lot of chemo way back when sometimes I had to mentally picture an object before I could recall the name for it. Now the words 'thingy', 'jobby' and 'oojamaflip' are frequent in my conversation.

He suggests that as side effects are mild we continue but if in 3 weeks any of the above is worse we omit at least a dose. I agree, and am grateful for his sensible approach and discussion. I slope off to the canteen to wait for my drug to be dispensed from pharmacy.

Ten minutes later he calls me to say he has decided to not go ahead with treatment today but instead order an MRI scan to be on the safe side. On reflection he has decided that I have done so well so far let's not push it. This sounds sensible. The MRI will be in the next couple of weeks, I see the bone marrow transplant team tomorrow,,,,,,so when I next see my Dr in three weeks time, I will have my MRI results pus a decision on which mode of transplant we are going for and then plans and dates can be made. All good :)

love love love
xxx

Phew...better

Phew, I am feeling better! Actually more than better I am feeling pretty dam good. Wondering whether I might actually be a manic depressive as there is not much middle ground with me. But hey, if I am that's probably not too much of an issue in the scheme of things?

As planned I have had my hair cut, I like it. It would look better if I wasn't so lardy but I am fantasising that after my stem cell transplant I will emerge from hospital at my ideal weight and then when hair grows back I will be an actual goddess. I know it's terribly un PC for me to entertain such thoughts but I can't help it! Hair still dropping but is just slow and steady and is thick enough not to notice for a bit.

I am gutted though, despite having been here before. I know it will grow back, and I do quite like having short hair so probably by xmas I will feel 'normal' again. But in between I know that I won't feel like being out and about socialising and stuff so no salsa, no roller discos :( We have a high school reunion in September so I am  hoping hair will stay intact until then. I wish I could get over the shallowness and vanity and just embrace it as a temporary event and not feel like hiding away, but I am just not there yet. I will be out of action anyway because of low blood counts so I am grateful that this will all coincide with autumn and winter. It's all a small price to pay for my life I know! But that doesn't mean I have to like it!

Today I write from my 'office' - oh yeah that's right now I am reborn as a wannabe novelist I have transformed the spare bedroom in to office / meditation room / bedroom. I have moved the desk and printer in here, I have purchased a big flip chart and pens for brainstorming, Exciting times! Now I just have to reset the body clock to be productive before ten o' clock at night....hmmmm. 

Oh and I lied! The other day I wrote that I had about 20,000 words of my book done, no - I was confused. I do have about 20 pages worth, but that's only 7000 ish words so I was tripping there thinking 20,000. Still, it is flowing quite well so fingers crossed that I can keep it up.

Haven't actually managed to go for a run yet, but I have been thinking about running a lot so pretty much all over it! 

That's all for now, 

xxxxx

Brentuximab: fatigue, aches and hair loss (oooh and rollerdisco)

I woke up this morning not in Portugal like I planned. I bought a ticket ages ago but subsequently spent all my money so I couldn’t actually even get to the airport. Epic me fail. But also I have been so busy lately I feel like I need some down time.

The accumulation of Brentuximab has begun to kick my ass a bit, I wake up aching every day, usually my legs, then it may move in to my arms. I am spending a fortune on over the counter analgesia cos I feel like a wuss asking Doctor for something stronger as the pain’s not that bad on the old pain scale, from zero being none to flipping agony being ten it’s only about a three but just constant.  I can sleep for ages, my default setting is one of general lethargy. And I have chemo brain big time. In the last few days I have forgot my shoes, my wallet, parked outside the flat  in the wrong bay, forgotten to book a badminton court when I am playing in fifteen minutes (twice) had countless rambled conversations with hubby where half of it occurred in my head (although after 15 years together he really should try harder to mind read)

So I have had a few days of general blah! Suffice to say it’s time to turn it around! I started the day early by making a delicious life giving juice , apples, spinach, celery, ginger, pineapple and cucumber, honestly properly lush! Just before Spain we followed the Jason Vale book 'supercharge your life in 14 days' and it was amazing, we felt fantastic mentally and physically and lost 9 pounds, bonus! So back on it.

Also on my taking control of my life schedule today I am going enter 2, yes that’s right 2 ten km runs in September, fact. And I might even actually go for a run today to get started, I will probably just spend the time I coud be running writing a training schedule and colour code it with felt tip, possibly a weight loss projection graph to sit beside it on the wall, or might actually go for a run, who knows?

I have an appointment to get my hair chopped at mid day, the shedding is not speeding up but it’s not stopping, having been here twice before I am taking action early. Might go for pixie cut type thing, with a low thresh hold for a buzz cut when it gets more obvious.

En route to the hairdresser I am going to print out what I have written of my book, what was that? Writing a book? oh yeah, that’s what I said print out  my book what I is writing! I have about 20,000 words so far but I need to see it on paper and scribble a bit. All I will tell you is that it’s a novel and I am writing about what I know :)

Good news flash! Three of my favourite people are moving to Exmouth! How ace is that? Very ace. Having banged on the last two years about how great is is to live here they have seen the light.

Oh and remember that bit about down time, that goes out of the window temporarily this weekend when, wait for it…there is an actual roller disco at the Pavilion! OMG this is pretty much a bucket list event! Can’t wait!

In summary, it appears that I cannot be super human 100% of the time but reckon I can rock a good 80%- maybe! The minor complaints I have are all treatment related and not actually anything to do with cancer because that is now history! Brentuximab has saved my life and here I am whinging about the side effects finally catching up with me. That does not detract from  my gratitude and respect for this wonder drug. On that note - I will go and fetch myself some more delicious juice and start planning my running schedule......

Hasta luego

(is it?)

xxx

To whine or wine??

Time for a whine! That's whine not wine, although maybe wine would help??

I feel properly pants (ie just yuk, out of sorts etc etc)

I think I have misplaced (not lost) my mojo, please if you see it can you return it to me asap! 

It started yesterday, yeah I know - it's clearly a chronic condition. I felt all tired and disgruntled. My only commitment all day was to meet my dad to play badminton, even then I was ten minutes late and forgot my trainers, so was left with choice of play in ugg boots or bare feet? opted for bare feet, played like a ninja but now have big blister on my foot.

Oh and, and!! My hair is falling out, flipping arse biscuits! Fortunately the growth I have had since my last baldy time means I have a fuller head of hair than ever, but still!

Went out for a couple of hours last night to catch up with some friends I hadn't seen for years which was really nice and I did not whine. Came home early enough to cleverly avoid the delicious cocktails that were flowing (check me out behaving like actual sensible grown up for the second time in a week! Oh blimey I must be unwell!). Got home, managed to whine a bit at husband who then gave me a beautiful anniversary gift, a lush silver and rainbow bracelet :) I then gave him his, which keeping with tradition was made of steel, 11 years of marriage, and it was a lovely collander (which we also happened to need for all the rinsing of fruit and veg for juicing) and there ensued a long 'discussion' where he helpfully 'suggested' all the things steel related I could have got him that were not house hold objects, how ungreatful I whined, and went to bed grumpy.

Anyway, woke up this am, happy anniversary us :) Still feel quite rubbish but have realised that most of it actually physical which is causing a side effect of general patheticness (is that a word?) and lameness.

Come on though! - I have breezed through nine cycles of Brentuximab and have actually found that after the first few things got easier. However the last month or so I have had irritating general aches and pains, tiredness, now hair loss and I think compromised cognitive function (I am finding it nigh on impossible to make any decision recently). I feel like I am made of lead physically and my brain is of a similar consistency.......blurgghhh! Oh and, this is probably too much information but my menstrual cycle is all over the shop, I am probably menopausal, hurrah.

So, that's me, nothing inspirational happening round here today! Well I better be off and MTFU!

I'll write more when I cheer up

xx