Remission after 6 cycles Brentuximab

OH MY ACTUAL GOD!!!!! REMISSION!!! Read it and weep! Or just jump for joy! Do a few laps of honour around the living room! Scream and shout! Open champagne! Tell the world! Then have a game of badminton....well that was my day anyway :)

Yes it's happened, I am in remission, it's official - heard it from the Dr's mouth this morning. The 'mass' that is behind my chest wall is scar tissue and not cancerous. Bloody hurrah for Brentuximab!!!!! But also hurrah for friends, family, fun, laughter, yoga, rainbows, puppies, salsa, musicals, parties, sunshine, waves, chanting, good food, fine wine, adventures, prayer, positivity, smiles, magic, miracles and LOVE!!! I really feel so blessed by the unfaltering love and support I have had from soooo many people, I know my choices and lifestyle this last year have not always been conventional and yet no one has judged me of tried to coerce me in to anything I didn't want to do.....oh my god this sounds like an oscars acceptance speech! And I'd like to thank my mom and dad and God :) 

Just having a bit of time out to write this and maybe snooze before badminton and the celebratory cocktails tonight.....and then I thought I have no excuse for snoozing or any other malingering activity anymore!! In fact I may not be able to guilt people in to basically doing whatever I want them to.....I may need to attend to admin more efficiently...change my attitude eewwww...get stressed about crap!! Whoah there! NO I say! Living is not going to change me I was having way to much fun! 

Soooo, the Brentuximab will continue whilst I am referred to the transplant team to discuss options- ie stem cell transplant (using mine) or bone marrow (someone elses). Dr said this am that stem cell has slightly less chance of cure but also less chance of killing me whereas bone marrow is opposite. But anyway lalala don't have to make any decisions yet it will be a couple of months    yet. So I get to enjoy the summer, go to Spain, take in a festival and then get cured....job done :)

Anyway, don't know what I will blog about anymore, not sure how interesting a day in the life of my dog could be - altho she is pretty awesome!

HUGE amounts of love always :)

Sim xxxxxxxxxxxxxx

Flipping cancer rollercoaster!!!!

Flipping.............flipping............................. FLIPPING.................. heck!!! Deep breath………….mmmmhhhmmmmm breathe in love ......breathe out peace! What a flippin’ day! I should be used to ‘bumps in the road’ and ‘blips’  etc, but today I fully require sedation!

I have been waiting for my Consultant to call re my results from Friday's PET scan, really hoping I didn’t have to wait til Thursday when I am due Cycle 7 of Brentuximab. I was trying not to think about the fact that my scan report would be just sat in the hospital computer system waiting to be read and thus determine my fate. So yes... I have tried to be patient but by this morning I was getting a bit worked up…everytime the phone rang I leapt on top of it already playing out the conversation in my head…….see I will let you in to a little secret here- I am NOT ill, like just not at all! This week I have been playing badminton for 2 hours straight, going to the gym, doing salsa, out and about on my bike and generally having more energy than most people I know……..I repeat I am NOT ill! So what in the name of arse is going on?? Well, surely the hodgkin's has gone?! Surely!? I am trying not to get my hopes up really I am but I can’t help it!

Anyway, so I called the unit this am and spoke to one of the fab nurses and asked if I could come get my pre chemo bloods done there today and also asked her to track down the Consultant whereabouts today with the hope of  getting results later when I come in. She was on to it and said she would try and see what was going on before I went in this afternoon….great.

So I rocked up for chemo bloods to be told I wouldn't actually abe having chemo tomorrow because my Consultant hadn't been able to be in today and therefore it wasn't prescribed (it is a complex process 'cos I am the first in the region to have it and the protocol had to be written especially pour moi...) also he hadn't read my scan report  so also could not make decision to continue treatment. So would I come back next week!! Now usually in the face of bad news (I have had a fair bit) I switch in to super pragmatic mode, but today  was uncharacteristically gutted and had to fight back the tears :(  I NEED the results asap!! AND if I don't get treatment this week the next one will fall on my Spain holiday! Nnnnoooo!!!

So, luckily my dear heart was awaiting my call from upstairs in the hospital and while I went off to swoon over labrador puppies with my dad, he went and tried to ensure  I got treated this week. Upshot is they will call us in the morning after chatting with Dr to see when is the soonest I can go in........phew!

Meanwhile - I have been in contact with a great website - Chemochic.org  I think I mentioned it way back last year. It's a very inspirational, polished and professional site, check it out. Anyway they may be using a piece I wrote re hairloss, yess!! I am very honoured, it's such a fab website and I am proud to be involved :) They just e mailed me today which put me on a real high so that was my UP! and hospital was my DOWN......trying to find the middle ground...

Well, large glass of Pinot Grigio and Tesco meal for two, hot bath and bed, sorted........tomorrow is another day!

Oh - and have been messing with my blog layout...whaddya think??

Peace

x

Scan post Brentuximab cycle 6

So I had my PET/CT scan on Friday..... results will be available to my Dr in 2 working days. Here are the potential results and outcomes...

• 'mass' has grown - cancer activity is whatever -plan will be no more treatment - bugger off and die
• 'mass' has shrunk - cancer activity is whatever - plan will be continue treatment and review with scan in 9 weeks
• 'mass' has shrunk - cancer activity is zero - ie complete remission- plan is continue treatment and consider stem cell transplant.......

Quick review, I was headed for stem cell transplant last year but failed to get into remission with chemo- my options were pretty much have more mega chemo, then have bone marrow transplant with good chance of death or long term disability..slight chance of cure, I read this in my own way but....that's how I saw it. But now I actually could be looking at possible complete remission with Brentuximab and then stem cell transplant.....and possible cure after living it up for the last 9 months without having to be an ill person.....this is actually amazing! However, having accepted death and having such a limited future..considering what life might look like if I do survive is actually quite scarey! That sounds awful and ungrateful but it's the truth! I know I am still yet to cross that bridge, but what will I do?? I'll have to get a job, generally sort my life out!  

Well either way this is a big week!!! FYI I promise to be the most amazing meeeee and make an amazing contribution to the world if i do live so please do, vote me!!
xx

PET/CT post 6 cycles Brentuximab....and maybe Barcelona!!

Massively brilliant! Just checking my blog stats and I have views (lets call them fans....lol) from Brazil!! Actual Brazil!! So - unsubtle hint..yes I would love to come convalesce at your house in Brazil and of course you can take me dancing! Not a problem!

Talking of dancing.....have been looking at getting the train from Alicante to Barcelona whilst we are in Spain as there is a very very cool salsa festival and I sooooooo want to get amongst it! It pretty much doubles the holiday budget...BUT...feels rude not to!  Am totally loving all my salsa classes, the teachers are absolute legends, I am sooo lucky to have access to such awesome classes :) I even converted another NZ mate last night - I made her partake very much against her will and she was pleasantly suprised and may pursue the world of salsa when she gets home (yay - another one!!)

Bank holiday weekend / jubilee/ exmouth festival was TONS of fun despite the pants weather.... Attended a proper street party which put a huge smile on my face (hope to plagarise some pics soon) great music, good catch up...and I took the excuse to wear my fab 'wedding' dress :) Then there were fireworks and bonfire beacons on the beach and just goodwill and love to all men :)

Meanwhile in cancer land- have scan on Friday- pleeeease visualise complete remission, ok I know that means that at some point, I may have to consider, perhaps getting a .......ewwwww job....but, ok I accept this scenario it's a fair cop.

Brentuximab 6 has probably been the easiest I reckon, bit of fatigue that's all , and if anything hair growth! - it's basically out of control! no more annoying anxiety, yes sir I feel pretty good!

Ok well again team I ask you to cross your fingers/toes/claws/fins etc for complete remission!!! Bring it on!!

Huge Love etc

xxxxxxxxxxx

A funny thing happened on the way to Chemo...Brentuximab cycle 6

Ok I lied, it wasn't actually funny..but here's the story anyway!

I was up on chemo day relatively early for me, preparing fruit and veg for some delicious healthy juices, oh yeah, and the phone rang. It was my son (who lives around the corner with my bro) he was fully ranting about the apparent 'loss' of his exam timetable which was obviously my fault as I had recently tidied his room. He thought that he probably had an exam this morning but wasn't sure and didn't know what time. So like the uber mother I am I calmy told him not to worry I would be round straight away. I duly abandoned the juicing activity and jumped in the car to go and help. On arrival to his room I immediately found the 'lost' timetable on his desk, and yes indeed his exam was in 30 minutes. One very stressful car journey later (Him-Oh that's it - I have failed the year etc etc your fault because and I quote "you raised this!") I delivered him to college bang on time. So he made his final exam and I tried to retrieve the inner calm and headed to the hospital. I had decided to go alone to chemo because I find it quite tiring to go with someone else, having to try and talk to someone all day, be semi entertaining..... and compensate for their impatience, I mean I am soooo used to just hanging around ..waiting, it doesn't stress me out a bit, but for those who aren't a patient or indeed patient...it's like - when will they see you? how long will the Dr be etc. For me, well you know, I have no where else to be so my attitude is it will happen when it happens...basically I prefer going solo.

Brentuximab number 6 was again plain sailing......I chatted the consultant up to do a PET not just CT after this round...(CT shows mass PET shows actual cancer activity) He was concerned re doing a PET straight away cos of high radiation exposure.....hmmmmm, so I asked if he meant long or short term effects, he said long term, I then clarified so as in years? Yes he replied. I reminded him I don't have years though, soooooo...........He then replied..............are y'all ready for this?? "Well you might have years, if the brentuximab gets you into remission and we give you a transplant......." Whoah there! WTF! Me? Actual years? This is big shit man! Of course the potential years deal involves a) complete remission and b) deciding on and surviving a transplant, but anyway it's all a hell of a lot more hopeful than it was last July!!! So you can pretty much stop feeling sorry for me as I appear to be destined to be immortal actually!

Brentuximab side effects FYI:

Fatigue (although someone did say to me that they were grateful for my fatigue as God help them if I actually had 100% energy) but anyhooo I feel fatigued!

Anxiety - re perceived, imminent, possible death eeewwwwwwww!! (this is a new thing)

Fudge brain syndrome, AKA chemobrain......that's what I am blaming it on anyway. Sudden inability to express myself coherently or tendency to have the first part of a conversation in my head then not understand why no one knows what I am on about.

But:

Blood counts normal

Hair intact

No nausea

Yes it really seems a miracle drug:)

I have felt great this round. Bigging myself up here, I did go into it very positively and I have been juicing a lot and bringing back the chanting.....who knows?

This week I went with my dad to choose the most cute lab puppy ever! I am sooo excited for a little play mate for TIlly......although she did get freaked right out tonite by a black lab pup who wanted to be her mate at the exmouth festival!! I think Dad's pup's name is Emma, i will make it so. Gutted though that only a few days afer he gets pup we are jetting off to Spain! Yess!! Massive hug to my liitle bruv who made sure  that this holiday happened, he is a star!

Om Shanti x