Cancer Support thread 88 - virtual rage room currently empty, virtual collective afternoon tea - all welcome!

[LemonDrizzle10]

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Afternoon everyone. I'm so sorry I'm rubbish at mentioning everyone by name but I've kind of been lurking until I had my oncology appointment today and finally know what's what. I promise to be better at getting to know everyone properly.

So oncologist confirmed Stage 4 Goblet cell adenocarcinoma (GCA) of the appendix which is very rare and very aggressive and has spread to my peritoneum and ovaries. I've been referred to Basingstoke for possible surgery but they want me to have 6 months' chemo before they decide if I'll be suitable for that.

I have to decide between Irinotecan with 5FU and folinic acid and CAPOX (XELOX). Apparently they are equally effective. I'm leaning towards to CAPOX because I won't have to have PIC line or pump with that one and it's possible I might keep my hair but the downside is more chance of neuropathy. Oh wise and lovely women, do you have any advice please?

It's shit losing your hair @TwigTheWonderKid but it's not going to affect your health and quality of life longer term like neuropathy might, and there is cold capping, wigs and other head coverings. In retrospect I wish I hadn't been so bothered about it. Though I did wear ice slippers for paclitaxel / carboplatin and I didn't get neuropathy. Sorry for your news

@TwigTheWonderKid I’m sorry I don’t have any advice for you but so sorry to hear your news.

Sorry to hear about your cancer Twig I was also given a choice of chemo but its like which poison do you want? 😂I would probably make same choice as you as I wanted to keep hair and didn't want a picc. I got through without a picc though its worth checking chances of getting through without and chances of keeping hair. I did get neuropathy and its not great but my hair bothered me more but that will vary by person. Its worth looking at risks in more detail, I found some had much higher risk of heart issues I was offered and that's why I chose mine. I am a year post chemo and most of neuropathy has gone. Its kind of like half numb, half pins and needles when I get it, other people get it as pain but there are meds for that if its very painful. My half numb means I don't feel pain that much. The light pins and needles is just annoying.

I’d lose and did lose my hair. No regrets. I’ve been on chemo for six months weekly and it’s already growing back beautifully. I get neuropathy but it’s manageable and I’ve never had the chemo decreased because of it. It was a huge relief when my hair came off. If you can get to Ware there is a shop there hairtoware that are experts and fantastic. They will
get you a wig exactly like your own hair and do your eyebrows at the same time too,

@SierraSapphire @Silkierabbit @EachandEveryone I'm on the fence with my hair as it's never been my best feature and I wouldn't mind having some wigs but the picc line and pump are definitely less appealing.

I lost all my hair and it honestly isn’t the worst thing - and I had a PICC for 5 months and it was fine. I do still have some neuropathy. Bear in mind that ‘keeping your hair’ doesn’t mean keeping all of it. Honestly go with whatever gives the best outcome - hair grows back (surprisingly quickly) - and I say that as someone who is also going through a grim divorce at the same time

Keeping my hair (well some of it) was good for my mental health during treatment but I’d be prepared to lose it if it meant no neurothapy. Sore fingers and toes are tolerable but effects can last. Hair is back quickly. My post menopausal/post chemo facial hair is already impressive (FFS).

@TwigTheWonderKid sorry to see your diagnosis.

I agree with@bringonyourwreckingball about hair growing back surprisingly quickly! Mine's only 3 weeks into growing back (unless it comes out again🤷‍♀️) & I've got about 1/2 an inch all over which I'm quite pleased about. The worst part, for me, was it actually coming out. Turns out I'm not overly fussed about channeling my inner mad scientist (also surprising, I'm rather vain).

No advice from me about the PICC line, sorry, I decided against it, unless they struggle to get a cannula in, mostly because I don't particularly want something there as a reminder.

I've had a better clothes day today - wide legged jeans, vest top & floaty kimono top tied at the front, in various blues. Christ knows what I'll look like at the weekend/next week if it does rain as much as it's forecast to 🙈 I'm hoping to get into town & find a different style of jean maybe that's a bit looser. I only have heeled "witchy" boots (as the girls call them) though, or new knee highs so will be having soggy feet if I go anywhere. Wrong season for buying boots.

Hope everyone's doing ok 😊

I love my picc line! I’ve had it six months and never had a problem. I specifically asked for one. I suppose being a nurse and knowing that my veins are crap from having antibiotics previously helped. You can buy lovely covers for them and I shower every day it’s never got wet. I highly recommend.

I didn’t worry about losing my hair, was more concerned about neuropathy. Hair should grow back.

Just spent 5 hours in A&E with UTI symptoms and shivers/ rigors, low temp rather than high. Think I should have been referred to an oncology ward instead as have just had chemo (2 days ago - second dose - primary peritoneal ca 4B)

Felt more and more lonely as time went on. No phone reception to call or go online.

It was bad enough for me- and a wake up call as to how my life is not my own. But I’m still physically robust, I can’t imagine how bad I’d have felt if I was more frail.

Love to everyone x

@TopOfTheCliff wonderful trial that your daughter is involved with. X

I’ve just seen a video of a friend ringing the bell. I wouldn’t dare, woukd you? I’m glad our ward hasn’t got one.

@isaxx thanks for such a detailed post. It gives me an idea of what to expect. I’m building myself up for a tough couple of weeks.

As far as I know there is nothing in the left side lymph nodes, but maybe they are double checking.

The surgeon has said they go in through the nipple area, so I’m hoping minimal scarring. Not that it matters that much.

When I recovered from my hysterectomy and then the surgery to remove the remaining ovary (x2 surgeries and I’d already had x4 for cysts and other gynae issues) after getting myself happy again I remember looking in the mirror and thinking well at least I’ve got my nice hair and boobs! The irony! Well the hair is growing back and hopefully the boobs will be ok…

I’m aware I’m lucky.

But all of this has just made me want to move back to the UK. Parents are in their late seventies and I miss my friends. It really puts stuff in perspective. Husband however not so keen and keeps muttering about the economy - not that it’s great here!

Just had covid and flu jabs yesterday - so arms are sore and coordination seems to have gone - bashed myself twice this morning already…

@Fantasea I think it must be that. They didn’t call it that though! Basically to stop clots getting through during surgery.

Only two real questions at the mo. Does it hurt putting it in? Do they have to take it out again after surgery?

Did you also have clots? Have they gone now? Mine are apparently less but still there. It’s been about two months but I think it was pretty serious.

Thanks for responding!

@TwigTheWonderKid the 5FU drug is similar to the Cap bit of capox. I’ve had both as I am the chief chemo tester round here. The IV drugs make you feel bad for a few days then better between rounds while the oral Capox will make you very tired all the time. What are your domestic commitments? Can you let them go and just rest or do you have DC to look after? Can you afford to stay off work throughout? It will influence which is easiest to cope with without a dose reduction. I have a feeling from reading the US cancer sites that if you have to work for financial reasons they often reduce the dose to allow this.

@FairyWren7 after what you have gone through your DH should be listening to you. Maybe you could negotiate a two year return to the UK for starters, then review the situation. Nothing needs to be permanent.

Today was a good day. I achieved the few things I wanted to do and had a nice hot tub with DH under the stars. Just keep going troups and we will get there!

@FairyWren7 I had 2 DVTs in my left leg which I was treated with anti-coagulants for, the dose was reduced after 6 months and I then got a recurrence of one of them so am on lifetime anti-coagulation. I take tablets every day but had to change to injections before and after my surgery.

The filter goes in through your groin. They make a tiny cut in the skin and then push it in. You get a local anaesthetic which stings for a few seconds but then you don't feel anything in terms of pain but a lot of pressing. That is the only way I can describe it, it's like someone is pressing with their fingers on the one area at the top of your thigh. They then take an X-ray to check it's in position and it's done. Then there is more pressing for 10 minutes to stop the bleeding, again not painful just someone continually pressing. You're in there about half an hour I would say. Then you're taken back to the day ward and have to lie flat for a couple of hours, then they gradually raise you to a sitting position over the next couple of hours and then you can get out of bed. I had mine taken out about 6 weeks after my surgery and it's the same procedure in reverse but they take it out of your neck. They don't stitch the wound as it's so small, just put a sticky dressing over it and you take that off after a few days, you get an instruction sheet. You go home later that afternoon.

The thing which surprised me most was how many people were in the room to get this done. I'd had drains prior to this with between 2 and 4 people in there with me, but for the filter, there must have been about 8 of them.

@Fantasea blimey that sounds a bit full on! But at least I know a bit more about the process now. Thank you! Best to be safe than sorry I guess. With the clots and embolism I just thought I was very sick with the chemo. I’d been getting steadily worse in terms of breathless over two or three weeks and the oncologist kept saying it was to be expected so when I got really breathless I just assumed it would be more of the same and waited to go in for the consultation before my chemo. Really wish I hadn’t waited.

@Fantasea sounds as if you’ve had a tricky time of it too.

@TopOfTheCliff thanks for that comment. I always feel like I’m being unreasonable. When I went back last year I ended up extending my trip and was away nearly six months in the end. I think it would be relatively easy to go back - I have a house there around the corner from my parents. But we have a dog and cat so I’ve been looking into transport costs. I moved for him twice, he’s Australian but we don’t live anywhere near his family as he wanted to live in another city.

I know it’s a dark thing to say but I want to be buried in the UK. I’ve lived in lots of different places as I taught in international schools for a long time. But as I get older I just miss everything about home - covid and being unwell has just intensified something I was starting to feel anyway!

@FairyWren7 i didn’t want to raise the issue of terminal illness as a bargaining chip but actually it would be quite reasonable to say this. “I may only have a couple of years left and I would like to spend them close to my family. If I survive this cancer we can always move back to Australia in the future but at the moment this is what I need”.

@TopOfTheCliff exactly. If it comes back. I wish knew what the future has in store…

@FairyWren7 That is the million dollar question. If we knew the future we could plan finances, housing, pensions etc. I am going to blithely assume I am cured and crack on with life until proved otherwise but there is always that tiny niggle at the back of your mind that harps on about recurrence. I am living my best life already so there isn’t much I would change. Maybe encourage my DC to crack on with grandchildren so I can be part of their lives. I have accepted this summer is a write off but maybe I can plan some mad exploits for next summer.

Question about docetaxel. I've just seen my oncologist and have been recommended 12 weeks of chemotherapy with a regimen that includes docetaxel. Apparently, it comes with a small risk of permanent hair loss. I'll do it anyway, but this came as a shock. Any experiences with hair loss and regrowth after this drug? Did cold capping help? I can handle temporary hair loss but long term sounds terrifying.

@isaxx - I had docetaxel after EC and didn't cold cap. The hair on my head nearly all fell out during EC, but started to grow back during doc. I met another patient who had had the same experience. I was worried about that too - there is quite a lot online about the risk of this happening, but I think a lot of it relates to a class action law suit in the states by people who say they weren't warned about the risk. If you're worried, why don't you ask your oncologist to give you an indication of the % of patients this happens to? Although my ever changing cast of oncologists were fairly unhelpful in lots of respects, they were always good at answering that kind of question. There is a lot online about people being absolutely floored by dox but I actually found it on balance slightly easier than EC, and one of the chemo nurses said that isn't uncommon.

I am feeling a bit rubbish today. I've started abemaciclib this week and had my first zometa infusion yesterday. I feel a bit shivery and have a slightly raised temperature, but no other symptoms so I'm going to assume this is the zometa and not neutropenia, since it's such early days. I have a couple of work things to finish off and then am going to take to the sofa with a blanket and a cup of tea as I have a busy weekend coming up (hopefully).

I had docetaxel first time round in 2020. My hair fell out with the FEC. It started growing back on Docetaxel. Three months after chemotherapy it was thicker than ever but a lot darker in colour. I don’t know anybody who lost their hair permanently. Hope that helps.

Isa I think cold capping would help. If you are really worried there might be another regime they can put you on if you ask. I was worried and got put on weekly Pax x 12 instead. I was given the choice of 3 different regimes, and I researched them all and felt happiest with Pax. My hair a year on is the thickest its ever been, about 2 inches thick and curly in parts, same colour as before and currently just at end of ear level. Also on Tamoxifen which is supposed to cause hair thinning but its thicker. I'ld prefer my old hair back as this reminds me of chemo and I want longer hair but I think the studies showing permanent hair loss where at a higher dose than used here in UK but those studies scared me. I think its very rare here.

Thanks so much everyone for the replies. I feel less frightened now. The priority for me is the most effective treatment, so I will go with the docetaxel as it is what my oncologist recommends. I will cold cap to see if I can reduce the risk of hair loss with it. I read somewhere that even if hair loss occurs, cold capping might help reduce the risk of more long term hair loss. I had my 16 year old daughter cut my hair shorter today, to make cold capping easier (I had very long hair). So, I'm as ready as I can be for the onslaught starting next week..
While I'm on the issue of hair how do you go about getting a wig consultation? I'm in London and not sure where to go or who to ask. I would rather try some on than order from pictures on the Internet. Nobody has yet mentioned anything about that and I forgot to ask.