Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

New thread

Time Hope Look Good Feel Good is helpful. I never went on it but seen lots recommend it. I never really wore makeup pre cancer but since have found with chemo hair damage and lack of sleep makeup does help, still don't wear it much but nice for when go out.

Well done WorryMcGee

Glad the chemotherapy line could advise LucysMam and would mention it again and also call back if it's worsening and not resolving though hopefully will resolve. I loved the chemo line, that's the only thing I miss from chemo.

Brunonononooo So sorry you are going through this. I am a different cancer and the treatment can be very tough but it does end and you don't get normal back but there's still lots worth living for after as well as kids like holidays, days out, pets, swimming for me. In the meantime take it one day and one stage at a time. I would say 50% of what you worry about doesn't happen though sometimes with cancer you get some other issue instead.

Could you maybe get someone to help with the garden Top, a gardener or a cleaner for inside until you feel stronger so you can just rest? You've been through masses of treatment and sounds like your body needs a rest.

I know exactly what you mean by feeling fine. Sometimes I wonder if I’d ever have gone to the gp with my lump, I made so many excuses for it. I have my last chemo on Wednesday then they’ve extended the week long break to three weeks so I can go to Glastonbury. If allgoes well, I will be on my second week off so should be feeling some energy coming back and I will be refreshed for my sixth cycle and then radiotherapy.

im off to see Are you there God, its me Margaret this afternoon. Happy school memories of hiding it from the nuns. My mother never told me anything so this book was a mine of information.

@Silkierabbit that is a sensible suggestion. I already have a rather lackadaisical cleaner who comes on Mondays but with so many Bank Holidays I haven’t seen much of her this month. We have a slash and burn gardener who comes and chops things down but I do the planting usually. I will see how I get on this week. The allotment has pixies now as every time I go up there another patch of weeds has disappeared. I think I am being “ helped” since I said I was happy to accept any help offered. Bless them all!
My sensible DD pointed out that I am comparing myself to Top at 100 percent instead of normal people. My SIL does very little even when fully fit and I am busier than her. If I am going to get through this summer without going bonkers I need to reduce my expectations a bit.

I loved LookGood Feel Good it it came at the right time after radiotherapy when I was recovering and the lady was very kind and gentle and understanding so it was an uplifting experience not a challenge.

I think all of us have to go through a grieving stage when we accept that treatment is going to make us worse and suffer to get rid of the cancer. Rationally we know it’s worth it but it is so had to accept when you feel well and it all seems like a bad dream. I am resentful that I am having to give up my summer plans to get through Cape.
Sending strength to you all
Top x

I’ve posted previously a little…
It’s been confirmed yesterday that I have
Primary Peritoneal Cancer - (High Grade Serous) Stage 4B . The oncologist did say it could also have originated in an ovary or a fallopian tube. It’s hard to tell.

My weight is stable and I feel and look well. I did have persistent abdominal distension, increased flatulence and pain in my scapula when I burped.

Oncologist has advised 3 treatments with carboplatin and paclitaxel. Then hopefully debulking surgery, followed by three more chemo cycles. Then maintenance therapy - depending on whatever they discover at pathology

I remember that someone else on the thread had Fallopian tube cancer, and was doing better than expected. Likewise with ovarian cancer.

So - now I’m a bit clearer I just wondered if anyone had had similar chemo or any advice about coping with this.

I know exercise is important - I need to be more consistent. I’ve had advice from friends about taking Turmeric or other supplements- does anyone do this?

Thank you x

@TopOfTheCliff I'm right there with you on needing to reduce my expectations of myself! I'm driving myself nuts with the things I want to do but atm I just don't have the capacity for all of it. It's very frustrating watching everyone else run around after me though.

What sort of exercise do you all do? I tend to walk everywhere but even that's knackering atm.

Shamefully my average steps daily are hardly touching 3000 and I used to do a minimum of twelve. I’m so washed out I just want my last one for awhile to be over with tomorrow. My thighs really ache when I’m going up the stairs to my flat and I do that at least four times a day chasing cats.

@RedRosesPinkLilies I had ovarian cancer stage 1a started from STIC in my fallopian tube - this was described as a precancer from which the ovarian spot originated. My main cancer was endometrial though. I had a hysterectomy and then five paclitaxel and carboplatin (given that I was 1a I couldn't find any evidence that six was better than five). I did loads of things and as a result I think I got off fairly lightly from the chemo. I cold capped as well, they told me that they didn't do it for this treatment and actually had to contact Paxman to check it was okay (even though it says on the Paxman website it is!) and I had reasonable success.

In terms of supplements, it's useful to look at your blood results and work out what needs tweaking to give you the healthiest body possible. There are factors such as low iron, vitamin D or magnesium that there's evidence affects survival and recurrence, and the NHS sometimes marks things as "normal" but they are not optimal. I take turmeric (with black pepper and oil for absorption) for inflammation, berberine to lower blood sugar (which also links to inflammation), and lycopene for cholesterol and triglycerides for example. I was topping up vitamin D but I've got to okay levels now so I'm easing off on that a bit. There are other things too. Lots of people say don't take supplements during chemotherapy without actually looking at the research, but actually there's evidence that some of them help with chemosensitivity to make chemo more effective. In fact grapefruit and seville oranges are the things to avoid, but no one tells you that! Having said all of that, it is complex, I paid for advice from reputable practitioners and I also read probably hundreds of medical research papers to confirm that I was happy with what I was being told (including by the NHS!) - it's not something I'd recommend doing yourself, but it can become expensive.

Your gut microbiome is the other essential thing, and there's increasing evidence that this can be an important factor in whether or not immunotherapy is successful.

@SierraSapphire
Thank you! That’s really helpful. I guess it’s what I can do to help myself that I need to know. My ferritin levels are low and I’m on iron (not great at taking it).
The Seville oranges? Are other oranges ok? Is it their level of Vit C?
can avoid grapefruit no problem

Im hoping my microbiome isn’t too bad. I cook from scratch a lot, because of allergies in the family. But have increased veg in my diet.

You’ve clearly don’t a lot of reading- thank you.

@RedRosesPinkLilies How do you feel after having your diagnosis confirmed? Having a treatment plan takes away some of the uncertainty but it's still a shock to have it bluntly laid out in front of you.
I also have fallopian tube cancer my treatment course was the same as yours. I didn't find the chemo to bad which surprised me as I was expecting to experience every side effect they listed. We all react differently to the same chemo but one of the things I did find useful was the after your first couple you start to recognise a pattern meaning you can plan around your good and bad times.
I didn't take any supplements during chemo (and have just had a grapefruit for breakfast). I'm not sure what area you are in but Penny Brohn have lot's of information about diet and supplements during treatment. They are a charity based in Bristol but there is lots of info online x

Does anyone take cbd oil? I’m thinking of it for all my aches I can’t see anything that says it interferes with chemo.

We're just in from an ecg to check for fluid around my heart after I was holding onto so much fluid - good news there, there's no fluid. It is however, skipping every fourth beat - no one has a clue whether this is a new thing or not because I've never had any sort of medical investigations before & it's never caused me any bother (still isn't). The man who did the ecg tried a few techniques to force it into a regular rhythm but they didn't work, so maybe it's just how I am 🤷‍♀️

@RedRosesPinkLilies I hope some of your fear has been eased now you have a plan. There will always be well meaning people recommending whacky diets for cancer (“you should eat more kale”!) but if they worked they would be advised by the oncologists. Don’t listen to the people who tell you to give up sugar or eat weird mushrooms. Having a healthy varied diet will always be good for you but to get through chemotherapy may take comfort food and lots of cake ( it did in my case anyway!) I think the research on the gut biome and how it affects tolerance and effectiveness of radiotherapy and chemotherapy is still in its early days. The nurses here are still recommending a “pregnancy diet” for neutropenia but there is little evidence for this and they completely ignore the gut biome and seem to think you should sterilise your gut.
I have experimented with my diet on Cape and I don’t think the side effects are any different when I have high folate foods and I am pushing probiotics because they make me feel better. I have kefir and kombucha most days and some kimchi although that gives me indigestion. I have grains and nuts and seeds and a mainly plant based diet but I still eat anything when I need a treat. Interestingly I am losing my taste for DHs sticky buns.
Last night was tough. My hands and feet were burning and I woke up at 3am in pain. I didn’t settle until after 5am when I got up and had what DH calls a Cheesy Moment attacking the fridge! Taking it easy today, for a change!

@RedRosesPinkLilies Sorry to hear of your diagnosis. I have stage 3a ovarian, but low grade.

I had a full debulking surgery last June followed by 6 rounds of chemo. The surgery was ok. I was bitterly jealous of the keyhole ladies up and walking within 24 hours, I didn’t get up for closer to 48 hours. I felt weak, couldn’t stand straight and didn’t eat for 4 days. But, the pain was definitely bearable. I only had morphine on surgery day and was then on IV paracetamol. My scar has healed fantastically and I’m now fitted than ever, having joined a gym and made some effort to improve my own health.

Chemo I also got off lightly, I had some neuropathy which went straight after finishing treatment, joint aches and pains and obviously total hair loss. But I was only unwell for 2 days after each cycle. The rest of the time I felt normal and went about my usual duties, I even returned to work full time (if home based) after cycle 3. Unlike Sierra I did little, I was kind to myself and ate what I liked etc. I put on a stone but maybe I needed some of that weight anyway. I didn’t take the steroids/antiemetic after each chemo as I found the constipation too difficult to deal with. I was hospitalised once with an infection as I could not fight it off. Other than that I had no issues. Any questions please ask.

@TopOfTheCliff you more than deserve a lazy day today! I hope you are relaxing and feeling a bit better.

Thank you @TopOfTheCliff and @AGreatUsername xx

GAH!

Having one of those days at radiotherapy. Did all the usual prep - bladder not full enough.

Drank more water, waited and waited and waited til the point where I was crying in pain - couldn't help it, had to pee so had to restart drinking water, fair enough.

More waiting, got called on and bladder too bloody full!

Hi all - I’m having my last chemo this week (woohoo!) and my PICC line out, does anyone know how soon I can get back to swimming? Completely forgot to ask at clinic today, I think I was caught on the hop by not having to wait the usual 2 hours to see the doctor. I’ve got a month before surgery so would like to try to improve my fitness a bit in the meantime.

@Lisdeflores
I just noticed your message - been at the hospital having my kidney function checked, and then my aunt was in the area and popped in.

Having got through yesterday and told our (nearly adult or young adult) children. I feel a bit better. I’m trying to see treatment as hope.

I absolutely know it’s not going to be easy - I just don’t know exactly in what way. But at least I’m edging forward to stopping this thing growing.

All the different bits of information are very helpful - means there’s less unknown - or when things go wrong I will feel less alone, that others have been through it too. X

@Lisdeflores I live in Aberdeen- fortunately not far from the hospital. I will look at the site you mentioned, though

Bring I didn't have a picc but I was told as long as no picc and no open wounds its fine to swim. I was told spend minimal time in changing room as that's the infection risk (though did treatment in covid times) but I get round this by wearing swimming costume under clothes and then bathing after at home. Also if going outside be careful to either cover up or wear factor 50. They also said to avoid jacuzzi, steam room, sauna though I have ignored that but only go in if its empty and been fine.

Finally home after a 2pm appointment - we got there in the end!

@RedRosesPinkLilies glad having a treatment plan is calming you. It's an awful phase when you just don't know what's happening.

@bringonyourwreckingball as soon as your PICC site has healed you can get it wet so probably 24 hours. Where you swim depends on your immune system. Maybe go for chlorinated pools not wild swimming in sewage laden rivers!

The good news of the day is that Clint the Splint has departed painlessly of his own accord. My white cells gathered enough power to push him out. Hooray! This is my reward for spending all afternoon in the local A and E with MIL90 and FIL90 who had a collapse yesterday while DH is away and SIL has food poisoning. I wrangled him out of the hospital with a precious DNR form and a promise of some rapid response help for MIL who looks after him unaided apart from me shopping and laundering. He was ravenous when he got home which proved my point that dementia patients in hospital don’t get food and drink given to them when it is so busy. It was honestly like a third world country in there, or one of Dante’s circles of hell. No place for a sick old person. I am quite cross with DH though. His response has been to complain that everybody in the family is ill except him and how upsetting that is. He needs to be a bit more grateful that he gets to go cycling carefree round the country while I take care of everybody despite my own issues. It does seem that getting dehydrated aggravates the Hand Foot syndrome. Anyway DH will be heading for A and E with a nasty injury if he doesn’t turn up with chocolate and an apology later.

Ah you're HR+ but HER2 negative, so we've got different cancers then. I'm hormone negative but HER2 positive.

We had the same chemos, but I'm also on two immune therapies (monoclonal antibodies) for a year that started with paclitaxel.

Cold cap failed for me too after the second cycle so I stopped. I don't think the nurses did it right, but in any case I couldn't be bothered it was so time consuming and they didn't really know how to do it. I think they might have learned now but I started last summer and a couple of nurses were new. I know 😂- no shaving legs or threading anywhere it was pretty convenient! I currently have a super short pixie style, not sure what to do while it slowly grows out... what are you doing?

How interesting you had paclitaxel instead of docetaxel because you couldn't tolerate the white blood cell injections. I had those injections (Filgrastim in my case) during EC chemo then also on the taxanes when they noticed my white blood cells weren't recovering as much as they'd expected. I found Filgrastim very painful on about days 5-7 each cycle, awful bone pain.

You're amazing you did the school run while on chemo!!!!

Was your chemo after surgery? Mine was before and they tracked its effect on the cancer. It had been in multiple lymph nodes to start with.

Pins and needles, was that your fingers and feet? Arms / legs too? face? I got it during chemo and stopped early because of it. Numb, tingly, painful downright torture I couldn't stand it, I nearly had a breakdown. I only managed 2/3rd of the paclitaxel. It's still being triggered by the Phesgo (the monoclonal antibodies). Has it gone for you now then, after the 3 weeks of amitriptyline? I had been warned about peripheral neuropathy, which I think this is; how horrible you weren't warned and suddenly got it! I find it horrific, unbearable. hairloss is really nothing, but peripheral neuropathy could easily make me lose the will to live. There is something about it that is relentless and torturous.

Hi @lucysmam

I tried to do exercise by doing online classes during chemo with Penny Brohn, a truly wonderful and knowledgable charity. Their classes are for people with cancer and the teachers are great. It's via Zoom which is super convenient when immune suppressed and/or quickly tired.

I find that walking varies, some days I'm ok but others I'm just too knackered.

Now (after chemo, surgery and radio but still on 2 immune therapies) I'm having some physio sessions at hospital. I feel weak, trip up, etc and my CNS referred me. The physio puts exercises in an app that I then do at home each day. I don't manage every day, but whenever I can, plus the physio says it's fine to do a selection rather than all of them. It's good to have exercises that were chosen specifically for me by a medical professional. I don't know if these are also offered earlier on in treatment (I think you were diagnosed and started treatment more recently (?) I started chemo last summer ).