Recently diagnosed

Thanks, John, I had heard about this too, and was going to post about it tomorrow. That is the drug which, after 7 years, did the trick for our daughter, she had it alone, and it got her into remission. I believe they are trialling it minus Bleomycin? So, A-AVD? A being Adcetris, which is the trade name for Brentuximab. 

Hope it does well. 

Hugs xxx

OO, John, that looks supper interesting!; too late for most of us in this group, already well set into our ABVD, but, I was wondering about something simular when I got diagnosed myself; I remember monoclonal  antibody treatments, just coming into lab trials, back when I was a student, in the early 00s.... glad to see  they've moved on now!; they can potentially really be very good, especially to help avoid side affects, with things like chemo drugs; as, the drugs end up being actually targeted to the cancerous cells, rahter than as they are now, in us all, just floating about everywhere, and often killing as many healthy cells as the ones we want them to specifically target....

jakki!; I've been thinking the same for weeks, but just haven't found the concentration, and energy and time, to make bread yet,; sort of finding the ideal day when I'm up early, alert, awake enough, and with enough energy and concentration to do it!; I was thinking I might make a small batch of pitta, as they're kinda easy to do, and just so rewarding for the effort; nothing at all like shop bought pitta!; actually, more like wraps in some ways, depending how I make them; useually I go heavy on seeds, as I like the flavours,, poppy, sessamae, and err.... the one I really like which has just now entirely escaped my mind!; I'm sure I've all the tubs and stuff still floating about in the cupboards; and I did buy a new tub of in date yeast, a few weeks/months back, in the hope I might get round to using it at some point.... - maybe I should try  bake some bread, for my final chemo day, to give to the nurses, and any patients who want to risk/stomach it! (well I'll obviously be pretty hygine conscious when baking, as I always am, but even moreso now, just to make sure).

wow. that was a bath!

gosh. I was a lot more stiff and aching than I thought; didn't quite realise how much until it'd been obliterated by the boiling hot water, various scents and oils and things, in the bath.

and. oh... I should so try get a bath like that every day. so ... relaxing to mind too. - had an odd moment, a little while afterwards; was thirsty so sitting on the sofa, drinking a cup of jasmine tea, just listening to a little bit of a play on Radio Four. and. suddenly. realised. I'd just been sitting there, for a while. feeling. "normal".

I'm sure you know what I mean!; it wasn't until kind of afterwards, I  noticed, just for five, ten minutes, I'd just sat there, just... normal, listening to radio, for once not notcing any aching, and just... - I think my energy/fatigue was kind of more  balanced, too for a little while... - moments like that remind me, that, hopefully at some point; a few weeks maybe even, after the last chemo, I'll start ridding of this fatigue, which affects one's thinking too, and, just, maybe some things will return to a resembalance of how once they were... - seems an aweful long while ago, even though it isn't!

very relaxed now. relaxed enough to have another play with this new Ipod thing I bought, see if I can figure out how to get the damn music moving on to it, properly... - its sort of one of my final 'chemo presents' to myself, so hopefully I can get it working soon, in tiem for the last few, two chemo sessions...

hope everyone else is having a relaxing evening, despite the high winds outside (well, its still windy here, but at least not raining now, I think).

Marke

Mark, I cheat and use a bread machine, hardly ever buy bread these days as it tastes wrong! 

Yes, Brentuximab is a good drug, Vedotin by itself would kill rapidly, but the antibody part finds the CD-30 and delivers it to the Reed Sternberg cells, clever! The main problem with it is the peripheral neuropathy, daughter had 6 doses in all, 3 weeks apart of course, and it got gradually worse after the first 3 or 4 doses, but still manageable, and has diminished enough to allow her normality, even in piano playing. But I know it has affected other folk worse, especially when the medics continued towards the maximum. 

The winds have eased a bit but our garden has suffered today. The loganberries and tayberries have had the tiny fruiting twigs blown about, many have been blown off. The Apple blossom, too, has been blown off. Hope they compensate! 

Hugs xxx

Moomy! no no no not a bread machine! haa! - I've got a couple really old fashioned style big mixing bowls.... - probably weigh too much for me to lift now, I've lost so much muscle mass, which I use.... - since being ill I've had to buy bread, and have found a good almost as good as home made, seller, on our local market, plus, the fresh bakery at Waitrose, does gorgeous Pain au Levain loaves.... and I seem to get though a pain au levain every couple days at the moment, so its at least always fresh!

The neuropathy is horrible!; at least mine still seems to be returning, gradually to normal; It may be more normal than I think; as I believe there is also a side affect of one of  the abvd drugs,  which leads to thickening of the skin on the hands, so some residuel feeling of not 'having feeling' in my fingers, may be due to that, I guess... time will tell I suppose, if it returns properly or not...

Mark

Mark, part of my reason for the bread machine is the proving, I really don't have anywhere sensible to do that here in this house. I've used the very best make of machine since the early days, around early 1990's, I got the first machine for Christmas, it was the only one on the market, a Panasonic. 

I have done part of the process by hand, and years before the machine, managed to make a shaped loaf for the Harvest Festival for our kid's school, a big plaited loaf. It did take a long time, the only place warm enough to prove the dough was the airing cupboard which I had to empty! 

about trials, daughter had a very early antibody treatment, but at that stage they didn't add a 'poison'. However, it slowed her lymphoma down so that she had a while on 'watch and wait' to allow her to recover from the tough treatments she'd had. I know, W&W is more used for NHL, but in her case it was just called 'regular appointments' every few months! 

Hope everyone is doing ok today.....

hugs xxx

Moomy! I was being a bit tongue in cheek with my critiasiscnm of bread machines! anything has to be better than slice white bought from the supermarket!

I have a simualr problem with no where suitable half the time for proving; I guess here as well now I've got a combi boiler I don't even have a laundry/boiler cupboard to use!



Oh. dear.
I kind of woke up a bit, late last night. and my brain started working, so I got distracted sorting out some things on the computer, and doing some other bits. Next thing I knew it had gone 3.30 AM! - after a cup of tea got into bed at about 4, and then was awake until well after 5 (lovely dawn chorus again!).

but. oh... just so tired now.

William here, soon, and really want to make it into town, but I'm not sure I have  the strength... - one of those points where I start wondering do I just bash through it, and not surrender to teh tired, and fatigue, and try get out, and into town, but risk feeling even more ill, or, do I surrender to the fatigue, etc, and just say I can't do much today cept go crawl back into bed.... really not sure.

I may make an effort, to at least get as far as John Lewis, and Lush, as there are a few bits I want there, that are easiest for me to find in the shop itself.... I guess after that if I'm too knackered, W can always have to pop just up the road to get soem bits of food for me...

And. of course. now I'm feeling so week physically, it really messys my mind up... So tempted to  ask... if William can stay over tonight...  I think some things only have a cure in cuddles...

I do hope one day to have my own body returned to me!.... but, on the positive; one week from tomorrow, is the penultimate chemo, and, therefore, three weeks from tomorrow is the final one! - suddenly seems further  away though, waking up feeling quite this zombie-like today! haa!

hope everyone else has managed a better start to the day... and indeed, a more sensibly timed end to yesterday, for sleep!

mark

Hello all

Back at work. Working hard... nah, not really, more hardly working!

I am already getting apprehensive about Friday... it's the last one and I'm kind of excited for it all to be flipping over. I'm also getting the normal pre-chemo nerves, too, alongside the horrendous dacarbaziney taste in my mouth that makes me shudder (and struggle to write the d-word without feeling sick)

My "zapping" planning is on the 13th (so a week today), whereupon we'll be scheduling everything in... I'd expect it to all kick off around the 25th (I know it's bank holiday but I'd expect they'd start it then) -  the radiotherapy oncologist said they tend to give you a couple of weeks' rest after your chemo. As was frequently implied yesterday by the dentists (who were clearly not down with the party line of saying all treatment is bad) my 30 gy / 15 fractions worth of radiotherapy is not bad at all in opposition to what some poor souls must be subjected to.. it's that kind of unguarded thing that gives me hope that the worst of it will be over by the weekend.

Ergo, the good news is I WILL HAVE AN IMMUNE SYSTEM IN 2 WEEKS. I will try to guru for you all on how the response grows..

Hope you're all good today.

Tom

Hi Tom, 

the anticipation is dreadful, it's something that you know you shouldn't think about but can't help yourself! 

If daughter's experience is anything to go by, her radiotherapy sessions gave her plenty of time and energy, plus feeling well,  to zoom off to help record her pal's CD, so not all bad at all. Yes, tiredness was the main thing by the end of the three weeks, partly due to her having to get going each day long before she normally would ( she's not a morning person!) 

hugs xxx

Tom; so excited in proxy for you going into the final chemo so soon! - I would sayl I'm envious, but... no, I'm just not... just so pleased you've made it through to this point, err... I think we all know it isn't necessarily easy at times!

I guess it must be feeling very odd though... - especially with the kind of unknown that is the radiotherapy to follow; but, everythign I've read about people doing RT post-chemo, across chemo regiems, seems to suggest its  a lot easier than chemo; esp with the ... err... whatever its called ... directed? radiation.... - I guess it varys though, of course, depending where we're each gona have it 'directed' as it were, and of course on duration. - Not a clue yet about how much I've got lining up after my chemo, I guess they'll wanna talk to me about that some time soon as I move into my final cycle a week Thursday.

Well. glad I made the effort today. - First thing, getting out of bed, making coffee, eating breakfast, etc, seemed to have just about done for me for the day!; but... William came round... and the world got brighter... and I ... decided not whimping out, and instead fighting aginst the tiredness, and fatigue, was the way to go.

Got all the way into town, quite busy in places, through the horrible shopping arcade, and into my own personal kingdom, which appears to be Lush. joked and got cajooled by the girls and guys who work in Lush, who seem to be taking a amused interest in my chemo-hair ribbons, and my new plan, which is to go for beads, to mark each radiotherapy session, when I get that far; One girl who works there; her hair! OMG! she's got such gorgeous long hair and she's had it all braided and its just so amazing!

Spent the annual military budget of a small African country  in Lush, yet again.....

Started feeling a bit 'odd' by teh time I left Lush; it was very warm, and the heady smell of all the scents, and had to find some fresh air, to cool down and regain some composure (is that the bleo that makes that sweating come on soemtimes like that?).

Then made it to John Lewis, and bought soemthign I've been meaning to get for ages; a small Wheat cushion/heat wrap. - been noticing, recently, that as often as not, when I make a cup of tea, I'm almost more interested in using it to put heat onto my abdomin/tummy..... so I figured a heat cushion thinggy, might be sensible, as that does seem to help; I'll try it out later; may also help with other muscle aches I guess.

Felt so much better for getting out of the house, just the fresh air, yes, and even the bit of rain in the air was nice and refreshing, even if the wind did keep trying to take my hat off (OK, time to put more packing inside my hat band, as I guess there is a lot less hair now again to hold it on my head!).

Popped into a couple shops for a few food supplys on the way home.

Fiance went home then, as he's got some emergency pruning to do; high winds been trying to steal various bits of plants taht grow against his house away, and pull the wooden trelace with them. - He's going to vote himself in the morning, then come to mine, and stay over tomorrow, which I'm rather looking forward too...

Nearly time for an early bath here I think, so I can try regain some more energy again, before cooking something for dinner.

hope everyone else is keeping on the bright side today. Little things often do seem to make sucha  differnce; like the people in Lush all being fabulusly silly with me, as useual today.... and just having people to interact with out in town and the shops... Well, and the cuddles with William, of course... they're just the best....

Mark

Hi All,

Back to feeling good and enjoying life. Had a lovely day out yesterday with friends, we had planned to walk Padley Gorge but the weather scuppered that. We did though spend all day drinking cuppas, doing lunch and shopping, oops bought a new top that I didn't really need but I wore it to the pub last night and it did look good. We also won the quiz so a great day all round.

Gav and I have entered the ballot for the London Marathon 2016, we have tried before, think this is our 4th attempt now so fingers crossed. If I don't get in I am tempted to try for a charity place, wI'll run for charity whichever way I get in. Umming and arring between running for Lymphoma/Leukemia research or Macmillan, if Gav and I both got a place we might do one each! Gav has now raised over a thousand pounds for Lymphoma/Leukimia research so far. He does his triathlon in June, I will let you all know how it goes.

Tom, I also get that nasty taste and sick feeling if I think about chemo, I have to think of something else quickly or it becomes quite overwhelming, isn't it bizarre how our minds work. I also now feel sick when I think about drinking fizzy water from the bottle, reminds me of chemo, I now have to take still bottles. The odd thing is I can drink fizzy from a glass, I know it's in my head but it doesn't make any difference I can't stop it.

Mark can't decide whether to make bread or scones this afternoon, thing scones might win as I fancy one with clotted cream!

Phil and Tom, thinking of you tomorrow last one Tom, Phil 3/4 of the way into cycle 5 let me know how it goes.

Love to all

Jakki xxx