Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

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Regarding hair loss, it is a bit freaky to see your body without hair isn't it!

I was like that for about 8 months, but it then started growing back. I think there was a gap of around 2 months after finishing chemo till it started growing back, or maybe 3 months.

Eyelashes grow really slowly, mine are still short, but then I am on two immune therapies that say hairloss affects over 75% of people.

I never wore my wig, it wasn't comfortable and felt overwhelming. I loved my different turbans from Amazon and Etsy in bright colours and glitter.

@SummerCycling thanks for your lovely post. It’s a blooming marathon to get through the full treatment once let alone twice. I started in 2020 with a small triple positive breast cancer plus one lymph node that qualified me for the extended 18 month course of chemo, surgery, radiotherapy and Herceptin. During chemo I dislocated my ankle and had surgery to pin and plate my tibia and fibula. I was trashed by that but slowly over the winter of 2021 I put myself back together again and went off on a solo sailing trip around the UK while my DH cycled along the shore. We raised £12000 for Macmillan Cancer Support and had a blast. I got back in time for DD2s wedding which was a magical day. Two weeks later I was diagnosed with the new triple negative BC and started the whole gruesome process again. I have ranted and complained about how unfair it is but at the end of the day you just have to crack on and get through. I am now 8 weeks into the last 24 weeks of oral chemotherapy so in 16 weeks it will be over. Because I am tough and stoic and mainly just make bad jokes my family and friends assume I am fine and I probably am. I am fairly confident the cancer is gone but then I thought that last time. Knowing my luck the light at the end of the tunnel will be another train coming to run me over.
What I have learned is to take one day at a time and don’t look ahead. I read the famous 1 Corinthians bible passage at my DDs wedding and I was thinking of it today. “Love bears all things, believes all things, hopes all things, endures all things”. That feels like the mindset for dealing with cancer. Thus endeth the lesson for today.
Time for a cup of tea and a lie down.
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@SummerCycling Thanks

My DH has BUPA through work - so what I have just now is an authorisation to contact the specific surgeon. I don’t know if BUPA would actually cover the surgery - but at least if I can speak to the surgeon in London I would know his thoughts.

I am thinking I might contact my own NHS surgical team first and ask what they think. That lets me be open with both sides. Maybe the team I have will reassure me - the surgeon seemed very good -made me feel confident in her.

I absolutely hate doing this - but I know the surgery is specialised (peritonectomy) and I might regret it if I don’t try now.

Lord, I was looking forward to a quiet life as the youngest left school. Just as well we don’t know what lies ahead.

(I know I am lucky to have older children).

@FairyWren7 the peripheral neuropathy I had with docetaxel resolved about a year after chemo ended. I know for some it doesn’t.
The horse shampoo is Mane and Tail shampoo and I thought it was hilarious so I bought some. It’s quite nice with built in conditioner but I don’t think it’s any better than Head and shoulders. There’s a lot of nonsense talked about hair regrowth. Eating well probably helps most.

BC posters, or anyone else who knows. I have a chest/abdomen/pelvis CT scan with contrast this week - the first one since my chemo ended last November so of course I have scanxiety. I’ve also been invited for a routine mammogram - but would the CT scan also pick up anything in my breasts anyway? I presume it would, so is there any point going for the mammogram? Thanks!

Sierra I asked that question to the breast cancer surgeons as I was trying to mammogram avoid as well and they said a chest CT would pick up a larger breast cancer but could miss a small one. Though they then felt for lumps couldn't feel any and seemed to imply was OK. The mammo misses 50% of lobular cancers anyway.

I've not used any special shampoo and hair has came back very thick so am not sure they make much or any difference really. I probably wash it less than pre chemo, probably having it fall out on chemo and again not sure this has an impact.

Re financial ESA is well worth investigating, they did try and make me attend an interview during chemo and I had a hard time getting it set up but I phoned and told them because of covid (good excuse for everything) I couldn't do job centre interview so they just gave me a 5 mins very friendly chat then all got signed off and backpaid and no more checks or doctors notes needed for a further 1.5 years so was worth the hard part at start. Just make sure you've got a spare hour or day if you need to get through to phone lines. And no need to worry about a bank repossessing during cancer treatment, it simply won't happen as they don't want the bad publicity (used to work in banking) but best to phone bank asap to discuss and let them adjust things if needed.

Thanks @Silkierabbit - sounds like I need to go then. I don’t know whether to wait until I’ve got the results of my CT scan as I can’t cope with two lots of things at one time or whether to have it soon to get the (mental) pain over asap!

@EachandEveryone Yes to the sweat! I guess your body is trying to get rid of the toxic crap any way it can. I'm entirely sympathetic as I'm sweating horrendously due to meno/hormone blockers plus the delight of wearing a surgical bra and dressings as I had my 2nd stage reconstruction a few days ago.

You can get facial & scalp anti-perspirants as I've seen them advertised on my fb feeds. I don't really like the idea of that sort of thing but it might be alright to try for a specific occasion. Otherwise could you wear a fabric band around the hairline to absorb some of the sweat? You can get headband things from outdoor adventure-type places as I think people wear them climbing, for example, to keep sweat out of their eyes. Or try an old-school tennis towelling headband & wristbands combo for a retro look! Anything goes at Glasto!

I've been to more gigs in the last year than I did in the the last 15yrs pre-diagnosis. I was very anxious about my stamina, & for the first one I went to (NIN at the Eden project!) I asked about special seating as I was still on chemo & flashed my chemo card but in the end I didn't need it. Latest was Pulp's comeback in Bridlington and then a festival to see the Viking-inspired throat-singers Heilung. We did try to get some re-sale tickets for Glasto on the off-chance but weren't successful. I'd have to splash out on glamping now though I reckon as I'm such an old codger. Have an ace time!

Also a sweaty mess and by god I stink! Presumably the chemo and other crap but I have a slightly chemically undertone...not pleasant at all.

Afternoon all🙂just wondering if anyone's experienced side effects with the bisphosphonate infusion? If so, how long do they last? I'm hoping not long! All good until I've just had infusion 4 of 6 (6 monthly), and 3 days after, oh my word. The pain in my jaw bone, going up into my ear. Paracetamol+ibuprofen+dihydrocodeine (left over from some tooth issue) just about took the edge off. Going to talk to chemo unit and GP tomorrow, hopefully they can suggest something more effective. Have had to request working from home as the concoction makes my head a bit wooly, so wouldn't want to drive. I can't find anything online that's definitive. Thank you!

I never sweated with the cancer treatment, used to get shivery sometimes bizarrely esp as in summer but affects people differently and as long as no temperature / infection its likely just one of the joys of cancer treatment.

Neuropathy mine peaked 3 months after chemo, went away and has since returned a bit though the doctors don't seem concerned. It's like a mix of slightly numb and mild pins and needles just feels a bit strange rather than stopping me doing anything. Half my head feels like it's burning but that they seem to think is some hay-fever fuelled sinusitis, that started in chemo.

If you are worried Sierra might be best to do ASAP. I skipped mine as just finished chemo 6 months earlier and too many stressful things but I know I had a chest x Ray a month before my breast cancer diagnosis showed nothing. And I had 2 cancers, one was like 5cms cubed and I am not big. CTs show more.

@SierraSapphire

I do think a chest/abdomen/ pelvis CT scan can cover the breasts, but I don't know whether the doctors can select to what extent or whether it does as standard.

When they did my staging CT scan (diagnosed BC with multiple lymph nodes, so staging to check for metastases elsewhere) it included the breasts as well as lung, liver, pancreas, pelvis etc etc

I’m actually not really that worried about BC Silkie, maybe I should be, I think I’m operating on the false premise that I’ve had my share of cancers! I think I’ll wait for the scan results then decide. It’s a bit weird here though that they don’t link the scans directly with appointments, it’s a month and a half to my next appointment, so I’m going to be worried for the week or so after about being called / written to any time if something comes up. Is that how it works elsewhere? I guess six weeks might be their processing time if they’re not alerted to anything immediately. I had a brain MRI in August 2021 to monitor an ongoing condition (which may never affect me but may need brain surgery at some point) but they didn’t review the results until December.

@TopOfTheCliff

That's a nice passage; it does seem right for dealing with cancer doesn't it. Thanks for sharing it.

That's terrible luck having to have surgery for something else during chemo. My oncologist would have gone ballistic; when my consultant (not related to cancer) suggested he might need to do a small procedure the oncologist almost shouted "not during your chemo!!" and said she was going to contact him to say absolutely no way.

Great you had such a fantastic time between the two cancers, at least those wonderful memories weren't ruined.

My family and friends underestimate too because I also put on a totally normal act. My GP gives me the sympathetic treatment, he's so lovely, but at the same time I sort of wish he didn't think it was bad enough to merit that. I do appreciate it though, because I can tell he sees how horrendous it is.

18 months is long isn't it with only one node? I had so many cancerous lymph nodes on diagnosis they couldn't even count, just said 'multiple'. My treatment plan consisted of 2 pathways: Both chemo first, then surgery. After surgery (pathway 1) pCR - Phesgo till year is up on that (total around 14-15 months treatments) or (2) residual cancer - Kadcyla for a year (total treatments longer, maybe 18 months). I got pCR so it'll be about 15 months. Mine is HER2+++ HR-neg, grade 3, stage 3.

24 weeks of oral chemo - which chemo is that, if you don't mind me asking? I made friends with a fellow patient at radiotherapy who has TN who weirdly had surgery before chemo. I wonder if she'll be on chemo too because she only mentioned oestrogen blockers (which I think is to prevent brain metastases in TN?)

You are enduring a huge amount, it isn't fair. I will feel that way if my cancer returns or if another serious side effect of the treatments starts up eg leukaemia or heart failure etc. Getting pCR has kept me going to now, although the immune therapies are really pushing me now to the limit with the neuropathy.

@Icantfindanewname

It's known for very occasionally causing serious jaw issues. Would you be able to get a dentist appt soon to get that pain checked?

@Icantfindanewname I second calling the dentist or the chemo nurses. It’s rare but Zolendronic acid can cause jaw necrosis. That’s why they don’t like you to have dental work done during treatment. I hope it’s just a neuralgia or something similar.

@SummerCycling I can’t bear to think of a third time round. But I am fit and strong for 62 and have motored through two 18 weeks courses of chemo and now this latest course without any serious complications so far. I am quite proud of myself for my fortitude. It is Capecitabine which is used for several different cancers including bowel and ovarian I think as well as mop up for TNBC when you don’t get a PCR. I hadn’t heard about oestrogen blockers in TNBC but I’m having a holiday from them while I’m on chemo. I’ll probably go back on them in October. Tuesday will be the third anniversary of my first cancer diagnosis and I’m still here!

@SierraSapphire the CT with contrast is the one where you think you have wet yourself IIRC. It’s the weirdest sensation! Hope it goes smoothly.

@SierraSapphire the CT can pick up the breast tissue - I asked about mammograms for the remaining good breast and they said not to worry it would be picked up on routine scanning. I did request a mammo before reduction last autumn just in case. You may as well do both as different imaging as we all know can have different views.

@Icantfindanewname I usually get some light bone pain in the lower spine and feel vaguely flu-ish for a day or so after my bone injection. You need to let them (chemo team) know that you had that pain - I am usually asked before each one if I have had any loose teeth/unusual jaw pain, etc.

Hi @each, you can also get a handheld fan on Amazon. I just bought mine few minutes ago. I have been suffering from horrible hot flushes due to hormone blockers. I hope it helps if you do get it.

@HerbalRefreshment @TopOfTheCliff @SummerCycling thank you all. Chemo unit told me to ring acute oncology. Acute oncology told me to ring NHS dentist. NHS dentist told me to ring acute oncology 😖

I now have an appointment with a reluctant dentist tomorrow, and then the merry-go-round will start again. And I just have to deal with the pain until then. I may need to visit the rage room...

@Icantfindanewname

I hope the dentist can help. My dentist knew about that jaw thing that Bisphosphenates can occasionally cause - before my first Zometa my dentist had to fill in a form for the hospital stating that my teeth, gums, jaw etc were ok to go ahead.

I wonder why the dentist said to ring oncology. Maybe because it could be their treatment that caused it? The thing is, it might be nothing to do with the Bisphosphenates! I still think it's a dentist's job to investigate and diagnose though(?)

I totally understand your rage. Hope it goes ok tomorrow.

@TopOfTheCliff

Great you're strong! I am so unfit and weak, or at least feel it. Also great you didn't have any serious complications from chemo; hopefully it'll carry on that way on Cape, despite feeling so exhausted - which will go with any luck soon after you finish it.

@Silkierabbit

You were unlucky with that stupid interview thing for ESA. They're not supposed to do that to people on chemo / radiotherapy, but maybe that rule came in after your application (?)

I know things happen that shouldn't though; for example my supposed 2WW referral to the cancer unit took forever, e.g. from referral to biopsy was 1.5 months. Why call it 2 weeks when you mean over 4? Just makes the waiting worse.

Glad ESA got sorted for you in the end! I wish I'd known about it earlier, I'd have been eligible sooner. I'm telling everyone I see about ESA so at least they know.

What is it I did get a letter from work saying to apply because my wages are going to half but i had already put in a claim for incapacity to work and universal credit. Ive got it this month and it was £700 which is really helpful. I just dont want to upset the apple cart by swapping.

oh god has anybody had these little spots on their feet and between their toes they arent it hing yet but look sore.

@TopOfTheCliff @SummerCycling

Just read your posts about oestrogen blockers for TN breast cancer - I’m post menopause but taking HRT. Which I questioned. But the protocol is to block oestrogen?

Top - thanks for the shampoo recommendation. I hope you are feeling a bit better.

CT scan for me tomorrow to see what’s going on!

Just got the phone call to confirm my brachytherapy can go ahead tomorrow! Also my MRI scan is showing a good response thus far. I've been an anxious mess all weekend waiting to hear.

Off to catch up on the thread.

@ClashCityRocker that is great news! Thread klaxon for celebration time! Every small win counts. Good luck tomorrow.

My energy levels have gone down further, if that is possible. I’m now at about 10 percent. Today I reread We are Completely Beside Ourselves by Karen Joy Fowler because I had forgotten I read it before and was surprised by the twist all over again. Great book! Maybe I should reread all my favourites while I have forgotten the plots. Remind me again did Elizabeth Bennett marry Mr Collins?

I have a cunning plan to ride the exercise bike on the veranda. Hopefully it will help keep my cardio fitness up even if I’m lounging about the rest of the time.

@FairyWren7 good luck with the scan. Knowledge is power!

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