Cancer Support Thread 98: support for those diagnosed and going through treatment

[FcukBreastCancer]

Hello 👋

@Bangersndmashlike you the treatment seems to have sent me into perimenopause - we now play the fun game with symptoms of "Cancer or Menopause" everyone's a loser!
My treatment was just 6 weeks but I had a period mid treatment, that felt like a serious fuck you, seriously what sort of higher being thinks that is acceptable?!

@Ventressi did buy some jeans, but there wasn't much choice on account of me being 4ft 11! Ive lost quite a bit of weight over the last few months zoom wary to buy anything expensive incase I gain the weight back so stuck to good old Tesco for my jeans fix.

Sorry to see so many new faces, but welcome, I wonder if I'm a little bit of a fraud still being here as my treatment has stopped and I'm waiting for the swelling to go down enough for them to scan and confirm if the cancer is gone. Hopefully I'll know more in February 🤞

Oops looks like the same post has posted multiple times. I've reported the additional two for deletion

@ForestFlowerFairy Please don’t leave!! Although I don’t have bc you give me hope. Also I’m 4’9” and always have had trouble finding clothes. I loathe shopping with a passion 😵‍💫. I feel a kinship. I’m presently waiting for that PetScan I was promised a week or two ago. Someone is dropping the ball 🏈.

@Sbmppi don't have have BC either, I have the super fun head and neck cancer which spread to my lymph nodes
It's been one heck of a journey and I often find myself saying things like 'at least my treatment was short, even if it was intense ' but it's all super crap
I do hope we all give each other hope, it's lovely of you to say I do, this group has been so valuable to me venting and knowing I'm not alone

@ForestFlowerFairy me too! At the moment my taxol and TT is every other week indefinitely (until pet scan)(which needs to be done NOW, and sorry for the shout). Actually since no news is good news maybe I’ll just take the win😝.

@ForestFlowerFairy yes please don’t leave! ( unless you just want a break from it of course) I feel a fraud at times too. I haven’t even started treatment yet and was on here before diagnosis was even confirmed.
@Sbmpp yes no news is good news , nice to see you back ! How’s the chemo been treating you? Xx

Sorry I realize I didn’t answer. I didn’t ask about driving tbh. I’ve had lumpectomies in the past and recovery was pretty quick. You need to be careful not to do too much especially with your arm for a couple of weeks as they usually take out at least what the call the sentinel node from your arm pit so it can feel a bit sore and weak and you’ll need to do easy exercises ( all fine) to For me the surgeon offered to take fat from my stomach ( not a problem 🙃) to rebuild breast as she said she wouldn’t use implants. (I don’t want them either ) . I think she advised that because I’ve already had radiotherapy on both breasts so complication risk is higher with implants in my case I think. It may be different for you because it’s your first time around so you may have a choice.

@Nonamelass I’m trying to remember how many doses I’ve had, maybe 10 or 11? I would have to say I think I am starting to feel the se are harder to shake off. The nausea comes on and off for the two weeks in between, and boy am I tired and it’s just so hard to lift up my legs and take a step. I finally received a call re: pet scan. After much back and forth of her saying “no appts. call outside scan center” and me saying “I don’t want to go there I’ll wait” she gave me a Feb. 4 appt. at inhospital scan center. I will then be able to read results on my phone or iPad. Bless her heart ♥️. I am more than grateful. @ForestFlowerFairy Lol about the periods. They were the bane of my existence. 7+days of misery and needing blood transfusions. You’re so right, not fair at all. The day my gyne said I needed a total hysterectomy I about kissed her on the spot. Thinking back I wish I could go back to simpler times without having life and death decisions and those worries stuck in the back of my mind.

Hi! Can I ask if having chemo makes you feel tired while having it? Xx

@Chinsupmeloves As opposed to the weeks after or during? I feel most tired after but one time as I think it was carboplatin being started I started wretching as soon as the infusion started and was wiped out after that treatment. It might have to do with what’s being given. I think it’s part of the journey none of us want to be on.
@Nonamelass I meant to mention as part of the pet scan: I have been having (this is ongoing) a fairly deep ache in the RUQ of my abd. Right over my liver where my cancer likes to spread. My liver enzymes are always elevated and while my primary dr. thinks I have mets my oncologist thinks not. My ps aren’t showing mets but every time I go in I think “is this the time it’s going to be bad”? Here’s to everyone having good news, negative biopsies and scans and continuing all clears.

Goodness you lovely ladies are petite! I’m a hulking lump of 175cm (just under 5’9”) so tend to have the opposite problem getting trousers and things which are long enough.

I would like you to stay @ForestFlowerFairybut I understand that you would like to get off this thread now that your treatment is over (so pleased that is the case!) You had a horrible treatment journey so it’s fantastic to hear that you are at the end of that 😊 Cancer or menopause is quite a game. I thought I was pretty much done with menopause but the anti-hormone they have me on now has really ramped it up again. What drugs are you on for hormone suppression?

Are they giving you a date for the PET scan @Sbmpp? Please keep chasing them. How is chemo now? Sorry just caught up with 4th. That’s not too bad I guess but can chase for a cancellation? Is there a liber biopsy or scan they can do for you? I am sorry you are in pain 🤗

you are absolutely not a fraud @Nonamelass- please stay. You are (unfortunately) an old hand at this and know your body and your symptoms. Very interesting about implants compared to using fat from elsewhere. Honesty, women’s gyne issues / who would be a woman sometimes?!

Hi @Chinsupmeloves. I found chemo tiring. I had it weekly on a Friday morning. I’d get home by about 2pm and then sleep/slob on the sofa for several hours. I watched some really rubbish tv! But then Saturday I would feel amazing. Really bouncy and on it. I think the immediate tiredness was caused by the anti-histamine which was part of the Pre-med. The bounciness the following day was the steroid (also part of the pre-med). But overall I felt more tired as the chemo weeks went on.
what chemo/treatment are you going to to have? Good luck with it!

Had my check in appt this morning - good news in that scan doesn’t show anything else anywhere beyond the spine metastases we knew about. I’m still struggling with the idea this just goes on and on though, last year the primary treatment was 4 chemo then operation, both manageable and pretty short term. This is long term, I have to find a way to live alongside it (and work!) and I think that is troubling me…that and it is the 587th day of January, raining again etc! I think i need to be looking for small wins, that and a slice of cake!!!

That’s good news @samlovesdilys. How pronounced is the spine metastasis? are they able to operate again, or do radiotherapy on the tumour?

I’m not there yet but I think I’ll have spine tumours at some point. If the lymphangitis doesn’t get me first!

I’m going in for an ECG this morning. I now have two “cycles” on the go. One with oncology consultants and one with the Zoledronic/ ribocyclib treatments with the nurses and chemo.

Back to work for me on Monday. I have said to my manager (who is lovely) that we can talk through hours as full time is still rather beyond me at the moment- just so tired and lack of sleep.

How are you doing @Nonamelass?

The metastasise is just in one vertebrae and I had radio on it before Christmas - plus an operation where they put a concrete substance in the vertebrae to hold it. At one point I was under three hospitals so I know what you mean, it’s tricky here to get them to look at what each other has done!
im definitely not ready to go back to work, i took the dog out for 10 minutes and i am done!!

Three hospitals? Oh wow, just one with different cycles is difficult enough. It sounds good to have had your spine stabilised and the radio should help hopefully?

Taking the dog out is good exercise - however long you manage it for.

@ventress hope you get your work to give you hours that are going to suit you.

I must be a wimp as I can barely get through my days while on chemo let alone work it seems to be flooring me every time.

I feel really fed up today, cycle 4 on the downward bit but doubts are creeping in, is it working etc, is anyone else like this at times or only me?

Definitely not just you, I have some points I feel really down about it all, but others when I am (as my urologist told me!!) a strong, determined woman!!
3 hospitals was tricky but each had specialists in different areas so I guess it was the best call 🤷🏼‍♀️
I am trying to just give myself some patience and grace, accept that sometimes will be crap but what is the alternative?? Huge hugs to everyone here for a Friday afternoon.

Hi all. Can I join? Currently undergoing 32 sessions of radiotherapy on the pelvic region along with 5 weekly rounds of cisplatin IV chemotherapy for stage 3 vulva cancer. Squamous cell carcinoma. 3 cm tumour and signs of cancer in lymph nodes. Surgery was not viable due to size and location. Today marks 13th session of radiotherapy and Wednesday last was my third chemo.

sometimes I feel pretty good all things considered and then it just hits me like a bus. I’m crashed on the sofa and feeling just ‘done in’ but 2 hours ago I felt pretty good. It’s a bit of a slog sometimes isn’t it?

Hello @waitingforthedaffodils - another vulva cancer patient here.

Mine was melanoma- surgery in 2019 and then more surgery last October. First monitoring scans showed evidence of more spread - had an MRI on Wednesday and waiting for a call to see if that gave any more info, but current plan is immunotherapy (I had immunotherapy in 2019 but my liver reacted so badly they stopped it, so pretty nervous about what the side effects will be).

Trying to take things as they come, but it’s bloody hard sometimes isn’t it?

Hi @Onewildandpreciouslife it sure is hard. I’ve been through so many stages of panic, grief, terror and everything in between and really I’m still in the early stages compared to some troopers I see in this thread. My biggest fear is what you describe… just having a life constantly watching and waiting for relapses and losing little bits of vulva and functionality as they cut away new lumps and signs of cancer.

mine is HPV related and it is my mission to tackle that as soon as my treatment is finished with diet and supplements. I have quit smoking and drinking (though I intend to still have the odd glass of wine once treatment is done) because if I don’t shift the HPV then I will stay at risk as far as I can see.

its so exhausting I don’t even want to look down the road sometimes. I’m sorry it has comeback for you. I don’t know much about immunotherapy. Is surgery not an option for you?

Thank you @cantbelieveIamhere - chemo is so tiring and debilitating. Please don't think this is down to you.- you are certainly not a wimp! Just deal with it as best you can. I dealt with it by eating biscuits and watching rubbish TV whilst dozing.

Welcome to the club nobody wants to be part of @waitingforthedaffodils . That sounds like a really difficult treatment that they have you on. Is the chemo and radiotherapy shrinking the tumours? I hope it is.

Hard to say if it’s working but I feel like I am noticing changes. I was bleeding and in quite a lot of pain before treatment started. That has quickly changed and I actually felt better for the first couple of weeks. It’s knocking me about a bit now - especially with loose bowel motions, rumbly grumbly tummy and nausea but the tumour I think feels… smoother? I don’t know what changes to expect really because it is on the site of an episiotomy and a labour tear from 2 child births so I already have scar tissue and lumps/bumps so I don’t really know how it will change.

I definitely second that chemo is debilitating at times. I find I’m doing fine one second then I seem to just crash and cannot motivate myself to stand, let alone do anything useful. It’s all I can do to make the daily journey to hospital for radiotherapy sometimes.

I found chemo was cumulative, each session a little worse, but I also picked up an infection at one point and a blood clot at another…biscuits and crappy tv definitely helped me too, and I am an expert on every flavour of squash there is!!!

Sadly checking in. I have been diagnosed with eye cancer. Just had surgical procedure this week to support proton beam radiation planned for next month. I will get results from genetic profiles in early March which will indicate the nature / aggressiveness of the tumour and therefore the metastatic risk - as well as possibly of inherited faulty gene which predisposes me to 4 other types of primary cancer (one of which I have already had) - and would also impact my DCs who would need to be tested in case carriers. So early days for me. Quite complex science to get my head around quickly and as with everyone the uncertainty weighs heavy. Is anyone doing all the juicing, supplements, diets etc? I have always eaten healthily (vegan) and don’t want to get sucked down some snake oil wild goose chase - but equally don’t want to miss a trick either. Best of luck to you all x

@Connemaraa Welcome to the journey no one wants to go on. I am so sorry you are here. My cancer also is genetic. I’ve let my siblings know and my dc have been with me from day 1. The people here are wonderful and will cheer for you every step of the way.