Cancer Support Thread 97: support for those diagnosed and going through treatment

[LiliJilliBobs]

Cancer support thread 97: support for those newly diagnosed and /or undergoing treatment…..
Thread 96 is pretty full - here’s a new one

@cannaecookrisotto I lost most of my hair between the 2nd and 3rd ECs (I was dose dense, so every two weeks). It definitely ramped up after the second one 😕 Hopefully you won't have the same 🙏🏻🤞🏻

I had a PET CT to check my intractable back pain wasn't mets to my bones. Thankfully not, but the pain, which nothing relieves, remains. My ankles, hands and one knee have joined in now. Oncologist thinks it's the tamoxifen. I've got physio in the new year, but am seriously thinking of jettisoning the tamoxifen, to be honest. I'm like a shadow of my former self on it. Also have a psych appointment in the new year.

@ForestFlowerFairy sorry to hear about your week and the long wait for scans etc, everyone I think feels the same about all the waiting for everything.
Also sorry about your son, its really hard dealing with just anything other than trying to recover.

@ventress wow you are supposed to be enjoying a break not breaking bones, have you had it xrayed? I bashed my toe straight after my chemo treatment two weeks ago and it went very black and I thought I had broken it, I literally caught the edge of a door between toes. I have broken bones in both feet from falls so know that its easily done. Is it your cold causing the breathing issues?
Hope you can get some relief from it all at some of your appointments.

@cannaecookrisotto yes I can understand exactly why you are nervous about your second chemo but I was the same after my first experience. I can say that having the dose reduced and better meds made it much better, not that it was really easy - but compared to the first time it was an improvement and so I would trust that it will be better next time. I did of course react badly on the unit but nevertheless the rest of it went better.
I hope your appetite improves for christmas dinner.

I am looking at my thinning hair and panicking about whether my cold capping can continue, but am seeing oncologist tomorrow so am also panicking about whether my treatment will continue after my reaction on the unit.

Sorry to hear so many people are waiting on appointments and outcomes its horrible waiting so best wishes

Hi all scan is on Friday ( not a bank holiday here). It’s not the scan I’m worried about but of course the results, all the anticipation, waiting rooms( arghhh waiting rooms) stress etc AGAIN but hey ho as @dancingwhilstfacingthemusic says I’m still here to moan about it so I ‘m just telling myself to shut the fuck up 😂Things could be so much worse and I’d have been ecstatic if I had had a crystal ball when I was 35 to see I’d still be here now even with a couple bumps in the road. So I’m just taking a deep breath and holding on til I know what’s what for treatment in January.
@cannaecookrisotto I had Fec x 6 and 2nd time I’m pretty sure it was EC ( 6 fecking tmes for my sins) with weekly taxols at the same time. My hair fell out both times around the second session, I actually found it a relief to just buzz cut it as it felt more comfortable and to me looked better than thinning hair( mine is fine anyway ) It was pretty easy to just rock it with a 35 year old face tbh and I only wore hats and stuff if I felt cold.
@Ventress how are you doing? Hope you’re feeling better
@cannaecookrisotto it does sound like a bad reaction I mean Fec/ ec is a nasty sod but your horrible reaction maybe was something to do with the infection as well as I think the oncologist said? So maybe try to go in with an open mind, it might be easier this time. And when you’ve done this one you’ll be half way through and the next one will be the second to last one. Then the last one was easy both times for me I found ( probably cos it I knew it was over!!) I used to think of it as climbing a mountain, once I got half way through I was at the top and then just had to climb back down again.
Best wishes and warm gentle hugs everyone

@cannaecookrisotto ps no they’ve not said I just heard something like inderminate? I know its grade 2 and as per usual in my case hormone positive. I asked about herceptin but they don’t know yet. I’ll log in and read it myself one of these days , I really trust them thankfully and cos of TTR have been under the same hozzie for years so I’ll leave it all on their sturdy shoulders !!

I mean indeterminate

Thanks all for the advice re hair, I keep running my fingers through it waiting for the time when I’m holding a handful of it.

it’s a surprise I have any hair left as it is due to baby fatfat and her snatchy baby grabby hands. Every opportunity she gets she has a good yank on it. Pretty sure I heard my scalp tear a bit yesterday . If it does start coming out in droves then I’ll be shaving. It’s all or nothing for me, I won’t like it if it’s patchy I’d find that worse I think. Plus I really do have an ungodly amount of thick hair so I don’t want my hoover to blow up either.

@Nonamelass it’s made me feel quite relieved how you’ve put it - that after the next one I’ll be halfway through them. Makes me feel all fuzzy inside! So glad you’ve got great faith in your oncology team, I’m happy with mine and it makes it so much more bearable. My friend who I’ve met with the same diagnosis is being treated at a different trust to me and she’s having an awful experience. Even the way they communicate to her is terrible, it makes me feel so helpless because I wish I could do more to help. She ended up submitting a complaint and a a had a chance of specialist nurse. I’m under the Christies Hospital and I can’t fault them at all. When my treatment is finished I’m going to take so many goodies for the unit, I look forward to seeing the nurses and I’m genuinely missing them now my treatment is every 21 days!

@cantbelieveIamhere thank you for reassuring me with your experience of a dose reduction, I remember how you had such an awful time on your first so it’s lovely to hear it’s made a difference.

For your thinning bits, can they give you a surgical cap to wear? I asked my nurses what would happen if I were to lose my hair and wanted to continue capping and they said they would pop a couple of surgical caps on me to protect my head from the cold. Would they do this for you? I’m sure there will be a way around it for you ❤️. My friend also had a bad reaction to her chemo and they did a reduction and a slower infusion, I’m sure they won’t stop your treatment unless absolutely necessary. Do let us know how you get on.

….
Waving to all, I’ve just crawled into bed having spent the evening working. I’m feeling a lot more “normal” today. I think my perception has shifted on what it’s like to feel normal now, any day where I don’t feel like absolute shit is a bonus!

@Nonamelass We’ve just had the kitchen done and I tell people my aim is to outlive the guarantee (I’m 59 and the kitchen has a 20 year guarantee).

@cannaecookrisotto dose reduction made a huge difference to me - that was on paclitaxel, then given that I still chundered as the cycled built up they dose reduced the EC and gave me massive meds. I was still knackered and bedbound for part of each cycle but had a few normal days each time.

My physio appointment was yesterday. The chemo has apparently weakened my quad muscles, which is what has led to damage to the cartilage in one knee. I’m hobbling. I call it Shitknee Spears. Amusingly, the physio has referred Shitknee to rehab. It’s all just the gift that keeps on giving!

Morning, I have been reading but my hands/fingers are rubbish at typing.

You never know @cannaecookrisottoyou may not lose much hair. My sister didn’t. She had taxol then EC with a cold cap. Fingers crossed for you. I’m glad you are feeling a little better.

I’m off to the hospital today to get my ribocyclib drugs. I can’t really walk much anymore- mixture of breathing and foot damage! DH is a total loon with a wheelchair 😱 He just keeps yelling “keep your arms and legs inside the car at all times” like he’s running a fairground ride.

DS and I had a marathon Harry Potter movie watch on Sunday which was nice. We even broke into the tub of quality street 😊

I’ll post more later but I have to go out now. Take care everyone xx

Morning @Ventress I’ve just had my tablets for cycle 2 of Ribo today. Have you just started yours? Sorry, I can’t keep up with everyone.

Your husband sounds awesome. We need some jollity in rubbish times.

@Ventress that image of your DH made me giggle 😅😅
Breaking into the quality street sounds exactly the right thing to do!!
Hope all goes well today and that you feel better asap
@dancingwhilstfacingthemusic I’m 59 too !!! No new kitchen here though ( yet)
@cannaecookrisotto Your poor friend, you need to feel safe when you’re going through stuff like this.
Best wishes to everyone @Inthebasement hope the xmas rush is going well !!

Lovely doctor has checked my foot and doesn’t think I’ve broken any bones but offered to get it x rayed anyway. I have politely declined. I am stuck in radiography anyway as I’m waiting on a chest x-ray. Doctor thinks it’s inflammation in my lungs as my bloods don’t show any infection. He’s given me steroids to try any help the breathlessness.

I am supposed to start the ribo today @dancingwhilstfacingthemusic I hope cycle 2 goes well for you 🤞

Good luck for Friday @Nonamelass, I’m glad it’s going to be this week for you.

@Namechange822really pleased you have had you last chemo and just regular check from here. What a milestone!

@cannaecookrisotto good I am glad you are reassured, reading back my post I mentioned better a lot, thats because I dont read them just post them.
Anyway do stay reassured because I have written down all my symptoms day by day and then I can check and see how bad/improved it is so pretty scientific as most of my first days recorded had many many swear words and none at all in the second cycle.
Yes I had heard about surgical cap, I also heard about cotton gauze to protect thin bits and I have purchased some just in case. Somehow I am now wanting to dig heels in about cold capping, maybe because I did epic over four hour stint last time.
Awful to hear your friend has had to complain - its bad enough dealing with cancer without having to fight to get information.

@Ventress good you are getting some help with breathing, you need to be able to continue doing that! also good no breaks in foot. Enjoy being wheeled about and of course everyone will have to fetch things for you all over christmas.

Have been for my appointment today, I was worried they would say you reacted badly so now we have to change to something else. Anyway thats not going to happen so I carry on with reduced dose and they will give me the chemo very slowly like last time because of the burning face situation and emergency buttons!
So next time (29th dec) will be my halfway point which is good! and I have a ct scan booked for 12th Jan. I will be on phesgo forever or as long as I can tolerate it. which is not exactly happy ever after but hopefully might be.

Keep resting everyone, ready for next cycles.

Hi All

I cannot sleep. My friend (who I mentioned in my previous post) found out today that she has lung metastasis and is stage 4. She is younger than me and has a 5 year old. Our diagnosis are mirror images of each other. Same stage, tumour size, no node involvement, sub-type.

I am absolutely devastated for her. We’ve become so close, talk multiple times each day and have been a huge support to each other. She is one EC treatment ahead of me. I feel like it’s two fold. 1, someone I care a lot about has received the news we have both discussed as being our worst fear and 2, it’s really brought home the precariousness of my ow situation and that if it’s happened to her then it can happen to me too. What’s even more rubbish is she was responding so well to chemo too, her tumour had completely gone. We’ve been chatting about how we will meet up once active treatment finishes and making plans together. I also feel really guilty that I’m ok and she isn’t. We’ve spoken so much about how we’re looking forward to the end of treatment and what we will do to celebrate and now her treatment will be ongoing. I just wish I could take it all away. It’s sent me into a bit of a spiral.

I hope you are all as well as can be and ready for Christmas. I got all my wrapping done today! DH tried to help bless him but he’s complete shit at it. Will cut out a 2metre long piece of paper for a lip gloss. Then moan it’s not neat. And this man can build a car engine 🤷🏼‍♀️.

sending love and warmth to all x

@cannaecookrisotto So so sorry to hear about your friend. My bff’s brother was just diagnosed with the same cancer I have but worse. I could barely keep from crying while trying to answer her questions. Sending you a big hug and peace and strength for the new year.

Hello all.
Im at the waiting for treatment stage for a small breast cancer (ER +/ HER2 -)
Im finding the information from the breast cancer team really flaky.

Saw consultant in November with surgery date for mid December- he was v nice and I felt confident with him. Radiotherapist said he did neat work. So yay!

For reasons my surgery was then delayed. Was told they couldn't say when i might know new date. So a week of limbo. Finally got a new appointment letter through last week with appt for the 62nd day after diagnosis.

Macmillan nurse rang me yesterday at the end of the day whilst I was in the middle of the shopping. Said the surgeon wanted to.remind me to stop taking my blood thinner a week before the op and then referred to her as she.

I said oh not Mr X then? I was told no. I asked who was doing it - and the nurse said she couldn't pronounce her name. Offered to spell it for me (no point as no pen to hand) then said she'd email me so I could look her up - but nothing yet. I asked if I'd meet surgeon beforehand- and she said oh i suppose so. I was a bit terse but really felt hijacked by having this convo without warning.

Im quite upset because I'd assume that if they worked with this surgeon regularly as part of the team, they'd know how to pronounce her name. Would tell me oh she's great. But as I've not got that - I feel I'm getting some randomer just so they can meet their metrics.

Doesn't help with Christmas coming up - there won't be anyone about I can talk to for reassurance. Its not the first comms comms cock up from the hospital.

I'm obviously stressed and esp now off my HRT. I might be overreacting- or I might be justified. But ive spent most of the evening weeping with frustration. And been awake now since 3am.

Should i just shut up and be grateful im being treated at all.

@cannaecookrisotto oh my goodness your poor friend and poor you. My heart is aching for your friend 💕 and for you , you must be so upset 💕
it’s so flipping unfair when people are so young and I can absolutely imagine the tail spin fior you. But you are obviously canny enough to know that everyone ‘s body is different, even if you have the same type of cancer and that treatments will affect people differently . Some people have small innocent looking cancers that just keep carry on coming back, some have very serious ones and get over them,and lots of situations in between.
I’m sure your friend will be given other treatments and I am crossing my fingers for her xx Don’t be daft about feeling guilty 😊 none of this is any of our faults xx
Have you chatted with your BCN or Macmillan? It’s alot for you to be carrying on your shoulders.
Sending huge hugs xxxx

Oh I’m so sorry you are so upset , the least thing knocks us of keel when we are feeling so fragile . The BC team could have taken the time to phone you and properly explain things .
If it’s any consolation I’ve had two lumpectomies ( is that what your having?) I was just assigned a surgeon and both were carried out perfectly .
Sending you a warm hand hold.

@cantbelieveIamhere I’m glad they are going ahead on 29th and that they have made changes to the way it will be administered and will keep a very close eye on you. Hopefully they will increase the pre-med anti histamine and steroids to help prevent reaction. Half way through is a great milestone. Being on the phesgo (or similar) forever is fairly normal I believe, please don’t overthink this.

I’m sorry about your friend @cannaecookrisotto. Is is actually lung cancer or is is metastasised breast cancer in the lungs? They are very different and have different outcomes and prognosis. As you friend has primary breast cancer it’s more likely to be the second option (this is what I have) and stage 4 just means it’s metastasised, not that it’s end of life. They must have found it very quickly which means her treatment and prognosis will be even better. You can still meet up and celebrate your milestones together, they just may be a little different now, Big (gentle) hugs to you both.

Well done on getting your wrapping done! DH keeps offering to do mine 😱 Please no. I will do it later, I don’t have much left to do.

hello @KimonoQueenthings always seem worse in the middle of the night. I hope you managed to get some rest. Please call the breast cancer team, or your BCN, today. They will be there. You can get some clarity from them. Please also stay and unload on us. We may be the group nobody wants to be part of but we give good virtual support 💐

For me I had a chest x ray and then lovely registrar came and found us waiting in pharmacy and showed us the September x ray compared to yesterdays. The lymphangistis is back (hence the breathlessness) so as well as the new ribocyclib I’m also back on daily Dex. steroids. He has said if it’s worse (or at least no better) by Christmas afternoon I have to call in. He says he will be in on Christmas Day and would enjoy having someone to talk to (clearly lying but very sweet).

Off to see my parents shortly then DSIL and her spaniel arrive later this afternoon.

If I don’t get a chance to post again I hope you all have calm, pain free, restful Christmases with food you can taste and plenty of help and support.

Merry Christmas fellow shit club members. Thank you for all the support in this crap journey we are on xx

Happy Christmas to everybody on the thread, and welcome @KimonoQueen to the start of the cancer triathlon. Get ready for the endurance event you never entered! This is a good place to come when you have questions. Stay away from Dr Google and just use NHS and Breast Cancer now websites and similar.
I too have had two lumpectomies which have turned out well and have pert uplifted boobies now. The second one was done unexpectedly by the female senior registrar who was fantastic. The whole team were great.
@cannaecookrisotto sorry about your friend. It is unnerving when fellow soldiers take a hit. I am mixing my metaphors today and I hate the whole cancer battle thing anyway but you know what I mean. I hope you enjoy your “feeling better” week now before the next EC hits. It’s a bit like evil surfing.
Sorry @Ventress to hear about your lymphangitis returning, and glad that you have found a kind doctor who is taking care of you. The steroids should give you a fun Christmas!
Christmas at Tops Towers has been sabotaged again. DH has Covid so we won’t be going to the family gathering. This happened at Christmas 2022 while I was on chemo so we had been staying out of crowded places for a week but he must have slipped up! I’m mostly thinking of DM91 so won’t risk it. Luckily we have plenty of food in the house to keep us going till New Year. Bah!
On the plus side I take my last exemestane today after five years of treatment for BC no 1 (triple positive) and three years after BC no 2 ( triple negative). This is a major milestone and my actuarial chances of reaching 80 have just increased massively. I have great hopes that all my aches and complaints will melt away but probably they are just part of getting old. What will I blame now?
Stay well folks.

Just wanted to wish everyone here a Merry Christmas Eve. I’m a bit behind hours wise but don’t want to forget. Peace (as much as can be had) to you all.

Hi everyone,

Just dipping in, in the middle of the Christmas madness at work. Sorry I haven't had time to read but didn’t want to let Christmas day pass without sending you all a massive hug and say that I’m thinking of you all and hope the next few days treat you all kindly. Merry Christmas you lovely bunch. Thank you all for being the wonderful bunch you are and giving your love and support so readily to everyone who lands here. X

Merry Christmas everyone, hope you have had a good day xxxx

Hi - I've just popped in again to wish you all a very Happy Christmas
May I invite you all to try this year's Christmas Puzzle
Good Luck - Let me know how you get on

Merry Christmas you wonderful bunch!
Thanks all for your hugs re my friend.

I’d love to know all of your wise thoughts on this.
Friend had raised temp the same week I did, the were worried about pneumonitis as a side effect from the immuno so they did a CT with dye.

The respiratory consultant said its markings indicative of infection/inflammation, as did the radiographer. No other tests were conducted.

Then on Tuesday this week her Oncologist said it went through MDT and they disagree with the other two consultants and think it’s metastasis, but a very small area. Oncologist also gave the impression that the situation is hopeless and spoke about quality of life rather than treating. Which we find crazy considering the tumour in her breast has completely vanished!!

My friend is seeking a second opinion as she has had issues with her oncology team before and has had to go through PALS.

Anyhow, my question is, is it normal to receive a stage IV diagnosis based on a CT without any further investigations? Biopsies, PET etc? Especially when other consultants had already told her the findings were inflammation. The report also says infection/inflammation. Considering her treatment plan is now being cancelled and they plan to start her on Trodolvy, would it not be wise for them to scan further to see extent and confirm that the lung markings are actually Mets?

…

How has everybody’s Christmas gone? I’m so full, I feel like a stuffed turkey myself. Tired isn’t the word but had a lovely day, kids have enjoyed themselves and now I’m back on my couch where I belong

I have no medical idea @cannaecookrisotto I deffo understand her wanting a second opinion Where would she have it done ? and how quickly? Could she afford to pay and if she came back to the hopital with that opinion what happens
For my 2002 BC they found a 2mm mark on one of my lungs right at the beginning when they check everything before starting treatment ( I dunno if CT was as reliable back then tbh) which they kept an eye on by CT every three months for a few years ( can’t remember exactly maybe three?) and it never budged so was deemed to be a scar or something innocuous.I distinctly remember the oncologist saying they weren’t going to open up my chest for a biopsy ( roughly translated from French) so I just had the ‘ insurance it doesn’t come back ‘type treatment plan and they kept an eye on it. Obviously every case is different etc
i have actually had a lovely xmas despite me and DH getting knarky with each other this morning ( stress of situation and of having ten to lunch😅) Was at sons and gorgeous DIL last night for a nice dinner while playing board games. It’s been lovely , glad you enjoyed yours xxx