Tamoxigang thread 49 when Sumer is y cumen in and we get out the Pimms

[Lilymaid]

New thread!

[IamtheZombie]

Sorry to hear that, MyNew. Once you're on the chemo treadmill all you want to do is reach the end of it and delays are so frustrating.

[malteserzz]

Sorry to hear that my new. Is there anything you can do to bring them up ? Like zombie says we understand that you just want it to be finished as soon as possible

Lily bet you look great, hope the dye goes well

[MyNewNormal]

Apparently injections can help but they're going to try reduction of dosage first. They realise the max dose has hammered my body completely. It's ironic cause now my mouth is healing and I'm eating better again I've loads more energy (well, until around 2pm then I crash and get new lease of life after 7pm).

[weebarra]

Oh normal, that is crappy. I had my chemo privately and got an injection of white blood cell boosting stuff for three days after chemo. Did the injections myself and it seemed to work, no delays to treatment.

[RahRahRasputin]

Normal sorry about the delay, I had to postpone my second cycle and it was rather disheartening when I'd been counting down the weeks for it to be over. But this is giving your body the chance to recover so that it can handle the next chemo better :) if the chemo is doing this to your good cells then just think what it's doing to the cancer cells. I hope your neutrophils pick up soon though, so you can get on with the next cycle.

I wish I'd breezed through treatment I barely left the house for six months and the side effects are still wearing off now, I finished last July. Glad the PALS stuff is in motion though really, I've found writing out what happened with the GP to be rather cathartic so I hope it is the same for you.

wine glad the surgery went well, and I hope you get the drains out soon, they sound a right pain!

Considerably good luck with the oncologist tomorrow :)

[Lilymaid]

No breezing through chemo here either though I didn't have any delays or hospital stays. Then I went on to Letrozole, felt achey, tired etc and had to go back onto oral chemo as the hormone treatment hadn't shrunk the tumour. Now getting through the oral chemo pretty well though I have been on antibiotics for infections and my feet are in poor shape.

[Shootingatpigeons]

Mynewnormal That was one of the ways in which my treatment was far from breezy. My white blood cells didn't cope at all, first dose they crashed to nothing and I got a strep infection and spent two weeks in hospital, then for the rest of my treatments low counts delayed every treatment by 1 or 2 weeks and the dose kept being reduced in spite of injections. So of course I felt sure it wouldn't work, that was 12 years ago........ Another way to look at it is that the way they calculate the dose is crude, and they do it with the full expectation they may have to reduce the dose, your body has clearly had a good blast, if the white blood cells have been hit hard so have the Cancer cells. The delays are upsetting but you will get there.

[MyNewNormal]

Thank you all for reassuring me . I'm going to focus on enjoying a chemo-free week (whilst being careful not to pick up infections).

[MomOfTwoGirls2]

mynewnormal I spent a week in hospital with severe nuetrophenia, mostly in isolation. The lovely ladies here were on standby to dig me out !! It delayed chemo by a week and I missed my kids school show which DD1 had her first solo performance. I was gutted.
My neutrophils needed an injection to get them up, but hospital waited a week before giving me injection, they preferred that it would happen naturally. However, I had nulasta injection after all the remaining chemos. And the neutrophils never bothered me again

Later, I needed Taxol dose reduced as it caused pheriphal neuropathy.

You have my sympathy. But try not to let it get you down.

That was my one very big hiccup during my treatment. Can't say I breezed through treatment, there was something uncomfortable each cycle. But it was quite manageable.

What helped me through the tougher times was to have nice treats planned for week 3 of each cycle. ( mostly meeting friends for lunch, and did lovely hotel break with DH in early Jan).

[MyNewNormal]

Thank you Mom. Gosh, hearing all your experiences, I really do feel reassured.

[MomOfTwoGirls2]

Ah good, that's what we are here for !

[Shootingatpigeons]

mynewnormal if it helps, not sure what your counts actually are but after the initial crash to 0.4 after the first treatment mine would go down to 1/ 1.5 ish on subsequent treatments. The injections would send it through the roof to 10 or more in the days I had them but then they wanted it to come back up naturally to over 2.5 after the injections helped you get through the worst days, hence the delays. I didn't have another problem with infection, and I had small children. My white blood cell counts have never properly recovered, they hover around the 2.5 mark , and I don't get more infections / viruses than average and I don't go out of my way to avoid them. Obviously be sensible and get help at the first sign of trouble but don't get paranoid either

[Wren48]

Mynewnormal, really feeling for you as I was told that my (last) tax tomorrow would likely be delayed because of a nasty cold I've had - couldn't very well pretend it wasn't happening as I'd been four hours in hospital on Monday getting checked out with a high temperature. It just hadn't occurred to me and I sobbed big time (PICC line blocked too, also unexpected). I just want to get to the end - even though rationally i know that the delay won't affect my quality of treatment. Latest news is that it's likely to go ahead, but they won't promise till they see me tomorrow (bloods showed infection reducing/ neutrophils ok). Ironically, by the time I heard that news I was already thinking that it would be nice to feel better and had started planning my new day tomorrow! But I won't tell them that, and I'm going to be sucking cough sweet like crazy to screen my hideous cough. So use the time to feel well and get strong. Hope you're ok.

Zombie, good luck today.
And anyone else with treatment/ tests/ results/ general tough times...

[MyNewNormal]

Yes it helps Shooting, thanks. My neutrophils aren't rising above 1 - they've been 0.75, 0.9 and (today) 0.5. But having another week chemo free might help raise that number; if not I have options.

Get well soon Wren.

[foofooyeah]

Bit of a shitty day yesterday. Ct scan revealed liver mets.
Every time I go to see consultant / Onc the news gets worse.

When I started treatment MRI revealed larger lump than expected but didn't reveal anything in lymph nodes. But I wasn't given a CT scan. I changed consultant as the one I know have had such a good reputation. When lymph node involvement was found after surgery I asked how did they know it hadn't spread and she said CT scan would have shown. When I said I hadn't had one she looked shocked and immediately ordered one .... Which revealed the liver mets

I recognise that I probably couldn't have prevented getting mets but it would have changed decisions eg: I would not have bothered with reconstruction surgery and I would have started on docetaxol earlier. I will be making a formal complaint.

I have had some interesting information about further surgery and procedures that my hospital don't offer so will be pursuing that.

I'm not giving up.

[Handbagsatdawn]

Foo that it crappy news, I'm so sorry to hear that, and annoyed on your behalf that you didn't get a CT scan earlier. I hope to goodness that your team now get right on top of things and give you a plan of action that gives you the very best treatment. You deserve some good news now. And of course you are not giving up, you are a beautiful, strong, brave lady who has lots to live for xxx

[malteserzz]

Foo lots of love to you, here to support you all the way. I've never had a ct scan though, here you only get one if you have more than 4 nodes involved

[Shootingatpigeons]

foofoo crappy crapness indeed , there are lots of treatment options for liver mets though, plenty to build into a plan. Huge hugs. I didn't realise you had switched consultant, not ordering a scan so you could make informed decisions was really letting you down, but sadly one thing we cannot change is the past .....

[Wren48]

Foofoo, that's pants news; huge hugs to you.

Definitely make a complaint; it may change something for someone else further down the line.

I'm glad you're not giving up; there are real options for liver mets. I'm glad you've now got a decent oncologist you can trust.

[weebarra]

foofoo - sorry to hear your news. Hugs. I didn't have a CT scan either even though they knew there was node involvement. I had a liver scan though - just shows you that different places do things differently.
A friend of mine with ovarian cancer was diagnosed with liver mets at the end of her treatment. They've tackled things quite aggressively in her case.

[UKsounding]

Hugs foofoo They seem to use a cyberknife at the centre I get treated at, and I have met numerous women who have done really well. I would feel the same as you I think and would want go as hard as possible as soon as I could. The liver will regenerate if they can get rid of the tumour before it gets up to too much mischief. Crap news of the day though and my thoughts and best wishes are yours.

[MyNewNormal]

What rubbish news foofoo. Both CT and MRI scans right at the beginning are normal at my hospital. Definitely make a complaint.

[mrsrhodgilbert]

Well I had my surgery yesterday, lump removed and three nodes. Apparently it went well, did feel pretty grotty yesterday afternoon and evening. It was my first big anaesthetic so didn't know how I'd react - evidently hot flushes/sweats are my thing.

Going to try to wash now and move about. Haven't read much but it seems like some very frustrating things are happening, sorry to hear that.

[kitkat1967]

I'm gald you are going to follow this up foo - it's always puzzled me why you didn't get a SNB at the outset (which would then have led to an ealrier CT). I'm guessing you woudl not have had any FEC and just gone straight to Tax - woudl have saved 4 months of treatmnet for you.

[reallyreallyworried]

Can I just say that when I said 'breezed through' I meant in that you didn't have issues with long waits, or bad experiences with hospital staff! I was in no way saying you breezed through Chemo! No one breezes through that.

I may be being completely oversensitive, but I feel from some of the comments that i'm not welcome on here anymore. Yes my experience of treatment has been crap, to say the least. But I didn't share it on here to scare anyone, or worry anyone. I shared because I needed some support! Which thankfully I received. I like to think I have also offered help and support to others. But I don't feel I can post anymore, as I feel I am being doubted (like I said I may just be being oversensitive) But it's how I feel.

So just want to say a big Thankyou to the ladies who have really helped me through the last 9months.

foofoo I am sorry to hear your latest news, I wish you all the best. Keep fighting xxx

malt wishing you all the best. You have been amazingly caring over my time on here. So Thankyou xx

Good luck to everyone, and THANKYOU!