Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

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Thanks @lucysmam for the nice comment. It is a bit sad that I have become an expert on Cancer by having full on treatment twice in three years. At least some good can come of it if I can help others navigate the frightening labyrinth. Have a lovely weekend if you can x Top

@Whattodotomorrow I had that multiple oncologists/multiple hospitals in my then-NHS trust at diagnosis and through my first year. It was over the first lockdown and I just HATED it - no chance to build rapport, the guy wasn't even a BC specialist (but a researcher under the Big Internationally Known Oncologist), sometimes I got the registrar or just the BCN, advice was really generic, never felt listened to, and frankly it felt like everyone was just going through the motions. An AI programme would have done a similar level job. Im in London so I imagine that is part of the problem, but especially for that trust I was in at the time.

Has anyone lost body hair again months after finishing chemo?

Last round was 6 months ago, all body hair started regrowing. I noticed a month or so ago that one eyebrow edge had lost hair again, this has now recovered, then this week I noticed nearly all of my eyelashes are short again with some normal length ones, so while I haven’t obviously lost them they must have cycled through much closer than usual.

Today I’ve noticed vast swathes of pubic hair missing! Totally smooth skin instead.

Is this something to do with the hair being on an all-at-once loss/regrowth cycle or something more worrying? Nothing missing on my head thank god but I will be DEVASTATED if that happens.

Nowhere on body really, but yes, my eyebrows and eyelashes have fallen out a couple of times, most recently for eyelashes about a month age. I’m now a year past chemo. I had read about this and was (semi) prepared, but it is just so random is difficult to really prepare for.
If it’s any comfort, they grew back very quickly.
My body hair, while not actively falling out again, takes a very long time to regrow after shaving, ie I have only shaved my legs twice, maybe three times since the end of chemo.
Its very odd what all this does to our bodies.

I am almost a year passed chemo, ended July 22, and not had that and hair on my head is the thickest its ever been thanks to the curls. Its now straightening but very thick. I don't think I ever lost eyelashes, eyebrows I did lose 1 time in chemo briefly some of but back in a few weeks.

@HerbalRefreshment Your response is totally how I feel…it’s like AI responses every time. My biggest bugbear was in between every 2 rounds I would have a physical examination and they would each say it’s going down…and my response was how on earth do you know as we’ve not met before today!!! The notes are only as good as the last guy!

Curious about the hair loss discussion. My hair is growing back on Docetaxel and I would be gutted if it falls out again. Eyebrows are hanging on in there! It’s also interesting reading about node clearance. I think I’m more nervous about that than any surgery on the breast. Sounds like it’s a really mixed bag for recovery time. I was really hoping to get a family holiday in between surgery and radiation or is that wishful thinking?

The best thing with holidays is to discuss with team, they can often adjust timetable to allow for though mine had a strong preference for UK based when during treatment and that also solves insurance issue. I did a week in Scotland and Lake District after surgery and pre chemo, did a week in Wales in a break in chemo and did a week in Cornwall after chemo and before radio. All were good but not at full energy levels. But that worked with UK option as it was cheapish as well.

@WilsonMilson Im so sorry youre in so much pain.

@FangedFrisbee Its a shock to see them on the scan isn't it. I hope the immunotherapy blasts the cancer out.

Sorry I havent read all of the posts ive missed recently, hugs to everyone who needs them, or some extra rage from me for the rage room if needed, but im sure you all have enough of that without mine lol.

Going fine with the Capecitabine so far. just feeling a bit spaced out for a few hours after taking them, so hopefully it'll stay that way.

Not sure where you all are, but, we finally have some sunny weather here today! Despite saying it was meant to be like it all week, it's been cold and grey. So on the last day of half term, we are having a picnic in the park with some of my kids friends wich i'm looking forward to very much. Today I went to a spa for the day, jacuzzi, steam rooms, saunas etc, seeing as I just started the tablets I decided to go., it was so quiet in there, it was lovely, when I got home, my husband had done the garden and cut a load of ivy down from the wall that seperates ours and next doors drive, wich, Ive been dropping hints for him to do for a few weeks, had all but given up hope of it being done lol.

Wishing you all a lovely weekend.

@Whattodotomorrow I snuck in 5 nights in Spain 4 weeks post surgery before chemo. I could not get insurance at all due to active treatment but took the risk (we had GHIC cards and I got a policy for hubby and kids but I had nothing). It was amazing and really gave me a little boost before starting more treatment. My team were fine with it, advised me to wear compression stockings on the flights etc.

@Whattodotomorrow with you on being more nervous about the lymph clearance. I'm basically okay with losing a boob 🤣 I realise that sounds ridiculously flippant but I've always disliked them, my main focus there is to find out if I'm allowed to get them rebuilt bigger 😁
Lymph stuff on the other hand sounds like it has a lot more consequences/after effects. ☹️

@TopOfTheCliff, @Silkierabbit, @WorryMcGee thank you for the lymph node info, that's all very very helpful. Top glad your friend is home okay.

Silkie thanks for the practical suggestions. I like practical advice, this thread is so good for that! Also, "big cat"- I am picturing a tiger??? 😂

Worry that's a really good point about a specialist PT. I will see what's in my area. I have been managing to increase my exercise over the last couple of years and I hate that I have to take a step backwards.

Not quite a tiger Allotment but Floof is working on that, he's 1.1 metres at 1 year old and grows until 4 or 5 years old. Hyper at 6am today, DH is in France all weekend so I am head of cat entertainment.

I did my first Park Run since the end of treatment and was 10 minutes off my personal best I was pleased with that I thought it would be a lot worse.

@AllotmentTime i’m also a bit nervous about lymph node clearance and the impact of that. Think it is right side only for me but will see what the surgeon says.

I’m currently limping towards my last chemo treatment this week the last dose of the drugs was reduced to 50 percent last week because of the tingly feet/hands. Now I’ll get a rest and we’ll see what the blood clots are doing. Hopefully the thinners have got rid of them. It’s taken months - Nov this all started…I’ve had several breaks due to other issues. Just to get 12 rounds of chemo in!

Good news is my hair is growing back, I’ve got some eyebrows now and a peachy fuzz on my head so that has given me a boost!

@Silkierabbit your hair sounds lovely! I hope my grows back like that! I’m taking a supplement that will hopefully help it grow back well - biotin I think is one of the ingredients. I did look at regaine but it’s ridiculously expensive and a decent diet and some vitamins will hopefully do the trick.

Its now nearly a year since I’ve worked properly. I was teaching but had a break to go and visit family in the UK. I did do some tutoring and supply work but it just didn’t fit well with chemo and feeling so unwell, plus the still present risk of covid. One of my chemo breaks was a virus caught at a school.

I’m doing a Community Development Diploma online while I am going through treatment and am hoping to have a different career I hope when I recover. But it feels like a long way away as have surgery, radiotherapy and reconstruction to consider.

Hope everyone has a good weekend. X

@Lisdeflores Well done on the park run. I’m still in bed which is pretty much unheard of for me at this time, trying to muster the energy for a run myself. I had a nice day with friends yesterday and a longish walk but after radio finished a couple of weeks ago, my energy levels seem to take a long time to replenish.

@Pinchaperfect I’m in the east mids and we finally had some sun yesterday after a whole week of grey chilly weather. Seem to be back to grey cloud today. I’m glad you enjoyed your spa day.

Its abeautiful morning. I have started to get really bad headaches at the back of my head, does anyone else get these? I had neuropathy yesterday but thats gone off now. Are the headaches tension or a side effect from the chemo?

@EachandEveryone I am a terrible one for headaches. Back of the head pain sounds like it could be stress related, but it maybe triggered by dehydration. I got migraines with chemotherapy on some rounds and they made me feel worse than the chemo itself. They were more sickness and a dull throbbing head. Drink lots! I kept some electrolyte solution for days when I was having diarrhoea. Thankfully the Capecitabine isn’t causing headaches. I’m

Yes Im wondering if its some kind of migraine as every week without fail during chemo I have one night where i sleep for 13 hours and then for two days I have a rotten headache. The routine of it fascinates me. Im as high as a kite the first two days cleaning like mad then after that I feel like I just want it all to go away, im tearful and exhausted. I am looking forward to the next three weeks off. I cant help worrying it will start growing again in that time!

@EachandEveryone I get similar for a couple of days post chemo - my consultant said it was likely the steroids. Having said that, they've been annoying rather than debilitating and as I've been feeling fairly well other than that, I'm reluctant to tweak anything.

Three weeks done, two weeks to go before either brachytherapy or another ten external radio sessions depending on suitability. So hoping for the brachy, it seems to get such good results and another ten days of radiotherapy seems like such a slog. The actual treatment is fine, but it's the best part of a four hour round trip to hospital and back everyday. I keep telling myself how lucky I am that I haven't really been hit by any real side effects as yet - that would make the travelling a hell of a lot worse but god im looking forward to not having to slog along there every day!

@Silkierabbit omg, i love your cat, those ears?!

@Lisdeflores Well done on your park run thats fab! i did my first run last week after chemo, mastectomy and heart surgery recovery....shocked myself by being able to run slowly 2km! after walking briskly for 1km to warm up, I couldnt believe it, and cried when i got home, so happy i could run that far after not running for so long....i know that sounds silly. I hope you are able to go to park run next week too!

@EachandEveryone I haven't had any headaches, but I've only been on these tablets since thursday so probably not the best one for advice, although a few times last Autumn I did have really crushing headaches, that lasted for a day, the oncology nurses called the a chemo hangover, so maybe its that? Hope you feel better soon.

The sun is out here today, wishing you all a lovely day.

Hello everyone and thank you for all of your support up thread, it’s greatly appreciated!

@TopOfTheCliff your posts are so useful thank you for sharing your wisdom! Although I am sorry you have to continue being on here, it’s very unfair.

Hope everyone is having a good weekend in the sun.

@HerbalRefreshment @Whattodotomorrow

Me too. I wonder if we're at the same hospitals!

I have hospital (A) for the location of the (extremely few) oncology appointments, for surgery, chemo, and immune therapies. But chemo is done by hospital (B) in rooms at hospital (A).

I was at hospital (B) for radiotherapy. Hospital (B) also provides the MDT and all the staff except the surgeons (hospital A) and CNS (MacMilllan).

Communication between the two hospitals is dreadful, they say it's an IT problem.

I almost requested a switch I felt so poorly cared for, but decided not to bother in the end because I was nearing the completion of my treatment plan which is due to end in a few months.

If I get stage IV in future I will re-think what to do, although a short journey is certainly an advantage.

PHESGO

(Trastuzumab + Pertuzumab aka Herceptin + Perjeta)

Anyone else on this? Could you possibly share your experience of side effects?

Also, do you ever see your oncologist, registrar or other cancer-related doctor on this?

I am asking because I am on it for a year and haven't seen a Dr related to this for 6 months except for a very brief oncology meeting to update my treatment plan (Kadcyla vs Phesgo: their decision was Phesgo).

Thanks!

Adding my experience to the lymph node clearance topic:

I had total clearance on the left, 6 months ago along with a mastectomy (no reconstruction).

So far no lymphoedema, but my arm does feel wrong. I am very worried I'll get lymphoedema because I then also had 15 sessions of radiotherapy, plus seroma after surgery.

No pain post surgery, and fairly good mobility in my arm and shoulder so far. I do the exercises every day, but only once as opposed to the 3 times advised in the brochure. That's the Breast Cancer Now handout in orange and pink.

@Silkierabbit

Your cat is amazing! 😍

@TopOfTheCliff

'Frightening labyrinth'

...that is an excellent and totally accurate description of cancer treatment. It's exactly what it feels like. Very, very clever description.