Cancer Support Thread 89 - the best thread that no one wants to be on.

[LemonDrizzle10]

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Thanks everybody for the comments. I wish I'd done what you all did and asked a more specific question - I'll definitely be doing that next time. I'm on the pathway for cervical cancer, which at least is usually slow-growing.

I've texted all my friends, with the result that my social life over the next couple of weeks is looking better than ever! I hope everyone else on here is doing ok.

@MarisPiper92 I found the day after the scan and the night before much worse for feeling anxious.

I found that the worry subsided somewhat when it wasn't at the forefront of my mind.

Posting here helped when I was worried. It meant I'd got it out there and there's lots of people here who can empathise with the frustrations of waiting.

Having lots planned sounds good! I also didn't tell some friends so that I could still go out with them without it being the topic of conversation.

Hi everyone thanks for the new thread. Hope you’re all doing OK!

@RedRosesPinkLilies i am currently in hospital recovering from APR surgery which is major abdominal surgery. My scar is from just below c section scar and ends above my belly button. It’s currently a lovely purple colour from the glue! In the hospital I would say super useful things have been:

Long phone charger as the plugs are miles away
Wear nighties for after abdo surgery (cotton ones cos it’s boiling!!!) because it’s easier to access the wound and doesn’t rub on the scar like pjs would
I haven’t bothered getting dressed. Just out a clean nightie on during the day currently because I still have a drain hanging out of one of my bum cheeks! But otherwise I would say the main thing that perked me up was a shower and feeling like I was in control of at least that so if you can get dressed then I would do.
If you have some kind of small firm cushion in your house (or can buy a cheap one) I would really recommend bringing one. I have found the air so dry in hospital and it keeps making me cough which after this surgery has been literally the worst pain I have ever had. Holding a small firm cushion doesn’t stop it hurting but does help a little bit. They have given me a sort of makeshift one here but I wish I had brought my own for comfort more than anything.

will try and think of anything else!

Hi everyone, well I had my first Onco appt this week. They are offering me 4 cycles (every 2 weeks) of EC followed by 4 cycles (every two weeks) of Paclitaxel. 5 years of Letrozole and 3 years worth of Bisphospanate with Radiotherapy in there somewhere. Seems quite a lot for a stage 2 cancer that had no lymph involvement although my tumour was 7cm and my Oncotype came back as 23. The good news from that appt is that my CT scan was clear so it is confirmed as not spread and my Echo showed my heart muscle works better than average for my age :), got to take the small wins. I'm going to be starting chemo in about 3 weeks.

I have searched for info on the chemo I'll behaving, the Oncologist obviously gave me lots of information but can any of you who have been through this cocktail give any advice preparation wise to try and make things a little easier? I have a small business that does 60% of its revenue during Nov and Dec - the time when I'm likely to be on the Paclitaxel. I need to be able to work as much as possible and I'd really like to avoid fatigue of possible. Without this revenue my business won't survive next year - I do take on extra staff during this period but it's never enough!

My friends appear to have become bored with me. They were all interested right at the beginning of all this but gradually they have faded away. I'ved tried not to be boring and talk only about cancer, I ask about them and their lives etc but I do feel sometimes that people feel cancer is contagious.

Welcome @MarisPiper92 :)

Hope you all have the best weekend you can x

Glad you have a plan @Scandimandy , and hope that you can avoid the worst chemo side effects during your busy period. Hopefully someone will be along soon who can give you tips, but in the meantime, take care and spoil yourself!

@Scandimandy your treatment regime is very similar to mine and we’ll be starting around the same time.

@Scandimandy hello, I had 3*3 weeks of EC and 9 weekly paclitaxel- so different frequency, same drugs. I found EC tougher, but others don’t. With EC the first couple of days were steroid wired, then a slump and then a better week or so before the next round. Pac was more meh throughout. For me the drugs prevented nausea. I was v tired- lots of naps and felt weedy. Drinking LOTS of water helped.
Hope that helps

@thesandwich Did you have hair loss, and when? What about weight gain?

@Florabritannica my hair started coming out after about 4 weeks- second EC cycle. I had a lovely friend shave it all off. I didn’t bother with cold capping. It all started coming back a few weeks after chemo ended, and after about 6 months has come back evenly and strongly.
weight gain wasn’t particularly bad despite all the comfort eating. I did work with a brilliant pt and worked with her throughout chemo, despite not being as active as many on here pre cancer. That helped massively, physically and mentally.

@Scandimandy I had the same chemo as you. I tried to work through it, but managed less than 50% of my normal work load during the chemo period overall. During EC, week one of each cycle was a write-off (apart from some steroid-fuelled low quality work - do not recommend!). Week two was okay, quite normal. During Paclitaxel, I was mainly just so so exhausted, and I had a lot of bone pain. I worked a few hours most days for the first three cycles, and then threw in the towel and took the last 2-3 weeks off completely. I just didn't have anything left in the tank.
Radiotherapy was easy for me, but came quick on the heels of chemo and seemed to just prolong the exhaustion I already felt.

I hope this helps!

@RedRosesPinkLilies hi there, I don’t know what surgery you’re having but I have experience of what they call ‘a full staging laparotomy’ which basically means your cut from above the belly button almost to your pubic area and filleted like a fish.

I had an almost 6kg ovarian cyst that turned out to be malignant and when the cyst was removed they also took my uterus, fibroids, fallopian tubes, ovaries, appendix, cervix and omentum. My daughter was told by her surgeon friend during my surgery - your mum is having a huge surgery. But to be honest it didn’t feel like that and I made a very good physical recovery - I think I went out for a family breakfast on day 9. Mentally however I was a complete wreck and under the care of a psychiatrist from the day the whole saga started.

If my surgery sounds anything like what you’re having done I’m happy to answer any questions you may have and to try and put your mind at ease even a little bit.

Chemo 12 of 18 done. I got the nurse to have a quick look at my tooth while I was there & queried whether it was ok to carry on since it's started to niggle - she did ring Western Park to check & the registrar said so long as she couldn't see any exposed root then it should be ok but I'm to be vigilant in the time between now and actually getting it sorted. I'll chase it up again at next week's consultant appointment & may try 111 to see what they say as well. I expect it to be go through their referral though because of the chemo.

I forgot to take my crystals with me this morning. I'm not entirely sure I believe either way in woo/healing crystals type stuff but they were put together and an explanation of why written for me & I've found the fact that a near stranger was so kind quite comforting. They're still sat in the sun <ahem> (that is behind the clouds), charging, as I was told to do.

@Silkierabbit wow, he'll be HUNORMOUS (to use dd1's new favourite word 🤣). The girls are still trying to convince me I need a chemo cat.

I'm another advocate for big pants - I haven't even had surgery as an excuse 🤷‍♀️ I like the shorty ones, or the lace set ones with the soft bralettes & shorts,if I'm feeling fancy.

@MarisPiper92 I have recently finished treatment for stage three cervical cancer around a month ago, waiting for my pet scan at three months post treatment to see how well it's worked and am happy to answer any questions - hopefully it isn't cancer but in my experience they tend to be able to spot it quite readily.

The treatment prior to stage 4b is pretty standard - radiotherapy supplemented by lower grade chemo, then brachytherapy which sounds a lot worse than it is. It is an intense treatment, but very short and usually given within an eight week period. I'm recovering very well and life is pretty much back to normal post treatment - I think I only had two weeks towards the end of treatment and two weeks after when I felt yucky. I wouldn't say any cancer treatment is easy, but this one is certainly less disruptive than some of them end up being. Good luck xx

@Scandimandy I haven't got a clue about the other stuff but haven't had any side effects from the Paclitaxel (apart from tiredness, remedied by an afternoon nap or early night) & my hair falling out. My hair's re-growing already too.

Welcome @MarisPiper92 you have reminded me I still haven’t dug up last years potato crop. Too wet and windy now anyway. Waiting is torment and you have to keep busy. I asked the radiologist how likely a cancer was and he just said “It’s cancer”. That was actually helpful as I was prepared for the next step.
@Scandimandy I had the EC-P dose dense two weekly regime because despite being 61 I had sailed through the previous FEC-THP three weekly regime. It means you get through it more quickly and has better results but there is less recovery time. The EC makes your hair fall out on day 18 approx. The P gave me severe bone pain but not everybody gets that. I would expect you are wiped out on week one but maybe able to work in week two. It’s “tough but doable” and you recover quickly once it’s over .
My second tumour was only 14mm with no node spread but it was a grade 3 triple negative aggressive little bastard so I’m glad we nuked it. I had radiotherapy and Bone infusions too. Now I am “just” on the last lap of oral chemo which is given for TNBC as letrozole doesn’t work for hormone negative tumours.
Had a nice haircut today and ordered a big birthday cake for myself 😊🎂
Love to all and take your tents down before Storm Antoni gets her!!
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Hi @Florabritannica that will be interesting! remind me what your diagnosis is? I am IDC BC gr3 high ER positive, HER2 negative. The oncologist told me my hair would start thining during EC but that it would go completely during Paclitaxel. She asked me about cold capping but I declined, I'm not bothered about hair loss. She said there is a 15% chance of cold capping having no effect and that it adds 1.5 hours to the treatment time. I have been referred for a wig but I'm not sure I'm a wig person, I also don't like any of the scarves, turbans etc as they scream cancer to me. I'll probably end up with a bucket hat!! Are you in the UK?

@Scandimandy I had five cycles of paclitaxel with carboplatin at three week intervals. I worked every day other than the days that I had medical appointments, although I think it helped that my sessions were on a Wednesday and so the worst days were on the weekend, but I could’ve worked through those if I needed to, I was a bit tired and felt I’d done a good workout but nothing worse. I also have a small business and was worried the whole thing would collapse if I didn’t work, not to mention not getting paid. It’s crap being self-employed and being ill. In some ways, though, I wish I’d taken the time to rest properly as my white blood cells didn’t recover for the sixth round (though I was ambivalent about having this anyway as I couldn’t find any evidence that more than five were needed). I did a lot of stuff though to try and mitigate the side-effects, which I think worked.

Thank you for the new thread. For newbies, I am a year on from a grade 3, stage 3 BC diagnosis and have moved onto long term drugs now and constant low level anxiety about recurrence. I am on holiday at the moment and trying to avoid cancer related stuff so just placemarking for now. Sending strength from sunny Copenhagen. Having a lovely time and have stopped wincing at how expensive everything is. This is the payback for a year of going hardly anywhere!

@PollyThePixie @Brunonononooo and a few others!
sorry - been away all day seeing two separate friends - whilst I can!

Thank you for all the advice and suggestions

I had a staging CT done on Wednesday after 3x chemo. It’s possible the surgeons will be in touch after 9/8 to tell me what they are thinking

I don’t know what the surgical approach will be - but I have primary peritoneal cancer - and it’s basically like rice has been scattered throughout my abdomen (except malignant rice). I have tumour all over the place.

I was thinking nighties might be an idea - so thank you to whoever said that. And the long charging cord. I think I’ll take a powerbank in as well - I got told off for charging my phone in a waiting room at some point. But it’s the NHS- different rules everywhere!

@Scandimandy
separately my chemo is also carboplatin/ paclitaxel on a three weekly cycle
I’m tired first 5 days after, but back to normal day 6. I’m not completely out of it day1-5 - but it’s unpredictable how much I can do, and I can just be generally sore. My feet can be really sore!!

Then I get about two weeks of being normal and people telling me how healthy I look! Apart from the headscarves…

I know it’s difficult being self employed- but you need to get the best treatment you can - to give yourself the best chance. If your tumour becomes resistant to chemo your work isn’t going to happen.

Thanks for the new thread…just place marking for now! Another BC…triple positive and finished 8 rounds of chemo and just had surgery. I’ve got my surgery results coming up next Weds.
I hope everyone doesn’t get too wet this weekend. ☔️

@Scandimandy This is the exact regime I am on - 4 EC then 4 pax, fortnightly. Last one next week, yay! I agree with others that for me it’s one week of pretty bad fatigue followed by a week of feeling better. I was very very sick with the first EC but then they prescribed a new anti-sickness drug (Aprepitant) which has been brilliant and I’ve had no further sickness. EC made me constipated so I had to take occasional laxatives. Paclitaxel bowels have gone a bit the other way but not really diarrhoea. Lost my hair after second EC but am still hanging onto my eyebrows and lashes (if a bit sparse), hoping they survive the last pax. Haven’t had the bone pain, neuropathy or any skin problems.

Thank you for new thread. Is there anyone else on here still checking in who is stage IV; incurable; metastatic? I’m not doing well. But don’t want to derail thread for everyone finishing treatment / waiting for results /NED etc. I think perhaps there should be a stand-alone stage IV thread as it’s hard to get lumped in all together without feeling out of place.

@mowly77 I am sorry to hear that’s how things are. Maybe you could start a thread on the LifeLimiting Illness page and we will follow you over there to support you. You are very considerate to think of others and how it affects them.You aren’t derailing anything and are always welcome here.
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Thank you everyone for sharing your experiences re EC and Pacitaxe, @OrangePippa your experience has made me feel a bit more positive about it! X