Cancer Support Thread #71 - here to help if you’re dealing with cancer in any shape or form, come in and say hello.

[Brassica]

Hi again everyone and welcome to the 71st new thread for cancer support.

All those who are currently being treated, have been treated in the past, have worries and concerns and/or are having tests are very welcome to pull up a chair and chat, vent, rant, pour hearts out, share milestones and anything else! We are a very friendly and all-too experienced bunch on here and there are no questions too small or silly to ask.

Our previous thread is here .

Anyone with any type of cancer (female or male) is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Please can I invite current members to reintroduce yourselves below for latest situations and stories so far.

[Brassica]

That’s frustrating mrsed, especially with the weekend now getting in the way. Hope you get a call back early on Monday.

Diary, I was hoping the taste buds thing might not be a side effect under Paclitaxel. Shame if it’s going to go on throughout. Does it last a whole week like mine does currently? Also has your hair loss included lashes and brows? I still have mine at the mo (thinning a bit) but it would be nice to keep what’s left.

[wineoclockthanks]

I'm an older member of the tamoxigang (as we used to cal, ourselves).
Diagnosed with er+ receptive breast cancer in 2013. Chemo was FEC for 6 months, paclitaxil x12, the a double mastectomy (no reconstruction) and 3 weeks of rads.
Just finished 5 years of tamoxifen and will have a blood text in Sept to see what happens next.
Have had various health issues over the past 5 years (thankfully nothing sinister) and so keep in touch on here. However, due to an ancient iPad which cant post on threads of more than about 100 posts, I tend just to lurk.
Taking this opportunity to send hugs to all.

[Diaryofalways87]

Brassica when I'm fatigued I can't taste anything at all, a bit like when you have the flu, but day-to-day I'd say my taste buds have dulled. I eat a lot of Marmite at the moment! I have eye lashes and eye brows but I've noticed they are thinning now. I really hope I don't lose them all together. I would find that more upsetting than losing my hair.

[Borntobeamum]

Dulce I had colon cancer and had a Right hemicholectomy in March and been told I'm in remission. So one asked if I'd been tested for Lynch syndrome and I rang to ask my CT nurse. I felt she was a little dismissive saying LD was a bit of a Buzz word at the moment and why was I asking.
She then phoned me back to say she had phoned histology to ask if I'd been tested. I hadn't but they were going to retrieve my biopsies and retest. I was told it'd take a fee days. Ive not heard and it's over a week so this has reminded me to phone again on Monday to ask x x

[Dulcedelecherocks]

Born how old are you? I think they test it if you're under 50. In my case they tested the tumour and found a missing protein so he suspected Lynch. He then refereed me to a geneticist and I only got to see her in January so almost one year. She then told me it will be at least 8 months until I get a definite answer so it's w very slow process. By all means chase it up because if you do have it, there are lots of things you can do to protect yourself from having a recurrence. What stage were you at diagnosis? I was never told I'm in remission (maybe because of ongoing tests) but my oncologist discharged me so I guess that is good.

[WTF99]

Hi all,
Just joining the new thread. I popped in briefly to the last one, and am a former member of the tamoxigang though under a different name then.

My story is widespread DCIS of left breast in 2013 for which I had a mastectomy with implant reconstruction. No further treatment as there was no invasive cancer present. A year later I was due uplift surgery on the remaining breast when the same problem was discovered and I had a further mx and recon, again with no further treatment.

I've been jogging along quite happily since then until Feb of this year when I discovered what turned out to be a 2cm grade 3 her2+ lump in my right reconstructed breast, which was a bit of a shock as you can imagine.
I had it removed on May 1st. My surgeon was able to preserve the implant which I was relieved about, and it looks as if the cancer hasn't gone anywhere else - clear margins, lymph nodes and CT scan.

I had my first of 3 FEC chemo on 3rd June and will be having 4 docetacel with herceptin and perjeta, with those last two continuing for a year, and 15 radiotherapy thrown in for good measure.

Today is day 14 of my first 21 day cycle and I've been feeling pretty chipper since day 10 thank goodness. Prior to that i had a few days of nausea, but additional meds seemed to sort that out, and one day of back pain which they think was caused by the filgrastin injections, for boosting immunity. I also had a pounding headache, unsettled stomach and my mouth tasting for a few days like a mouse had crawled in there and died. Boiled sweets helped!
I did manage to coldcap and am going to do it again if I can....fingers crossed it has some benefit.

I had a 'friend' helpfully tell me that she'd heard that docetaxel is much worse than FEC in terms of side effects, so would be interested in the experience of you lovely ladies on that one. And also how you have found the experience and effectiveness of coldcap. Happy to answer any questions on my experiences if it will help.

I'm late 50s and live alone since my marriage ended 3 years ago but have a new significant other, who hasnt yet run for the hills despite all this drama, a fab support network of friends and 2 young adult children who have been wonderful.

I'm a bit pissed off with breast cancer now to be honest but right this moment I'm so happy not to be feeling sick that nothing is going to spoil my good mood!

Apologies for epic post!

[gib1973]

Thanks Brassica for a nice shiny new thread. Another Breast cancer person here. Diagnosed beginning of January - had 6 rounds of chemo and had an MRI scan which showed a complete radiological response. That means that I can have a lumpectomy instead of a mastectomy which I'm thrilled about. Trying to stay as positive as possible throughout treatment :)

[SnowsInWater]

Welcome, or welcome back gib and WTF. Not surprised you are fed up WTF, I guess my greatest fear is that this is not the "year out of my life" I am trying to think of it as but rather the start of something that never really goes away!

I did try cold capping for my first two rounds of AC but lost enough hair to have bald tender patches and couldn't face it any more. I got through the second two rounds of that and the first of four Pacitaxol before I had to shave my head so it could have been worse. Second last Chemo tomorrow then I have a conversation with my oncologist next week to tell him yes, I absolutely want a double not a single mastectomy (with Inflammatory BC lumpectomy isn't an option no matter how good my last scans look) and I am just hoping he will agree.

[WTF99]

Hope you get what you want SnowsInWater
I didn't find the mxs to be too bad really. And I'm quite happy with my shape now. I do miss my nipples though, more for the sensations than the look.

[Brassica]

I just wrote a post and the iPad fucking wiped it. I am not feeling great the last few days, this is day 5 of me being laid up in bed feeling rotten. This dose of EC has given me a thorough going-over: everything tastes disgusting like mud, if I eat anything I get the squits, my bones are weary, my eyelashes are falling out at a rate of knots, I look like an aged tortoise without hair and makeup, I’m wincing at noise or movement, I feel like a shell of a person. It would help if there was anything on earth that tasted remotely good. Bollocks to this.

[WTF99]

Brassica poor you
Which cycle is this? Do you have many more to go? It's really crap isn't it.
I don't have much to offer being such a newbie but I did find that sucking sweets and lollies made my mouth feel a little better.
And having a bit of a cry and a hug.
Hang in there girl xxx

[SnowsInWater]

Oh that sounds horrible Brassica! How many more sessions to go? I find sweet things better when everything tastes like crap, I have given myself permission not to beat myself up about anything I can eat that tastes good during Chemo. Sending you some virtual homemade caramel slice 😊

[TwitterQueen1]

Bollocks indeed. Strong salty stuff worked for me. Cashews, Roquefort,...

[FlippyNeck]

Thanks for the new thread @Brassica. Sorry to hear you're feeling grim at the moment, I hope it all improves very soon.

I'm usually more of a lurker than a poster these days, I've been popping in but not much to say lately and also just too scunnered by our recent losses.

I've been here for a while, dx Nov 16 with triple positive (HER2+, ER+, PR+) breast cancer. It was a sneaky bugger, tiny 7mm tumour which didn't show up on mammogram, but had spread to 8 lymph nodes along with another tumour and DCIS. I think I've had most of the treatments for BC - mastectomy and recon with reduction on good side, chemo, rads, bisphosphonates, herceptin, exemestane, I was on zolodex until I had an oophorectomy last year. I cold capped and kept most of my hair. I'm currently on a new targeted treatment, neratinib, after pestering my oncologist to apply to the free managed access programme. That will end in November and I'm due my final bisphosphonate infusion in July. I have one DS who's almost 11, my DP died in 2016 from renal cancer.

I've had a few scary moments when I've been convinced it's back. Some of you might remember that I had a scan earlier this year that appeared to show that my Mirena coil was still in place when it was supposed to have been removed over 2 years ago. I'd been under the care of a truly dreadful gynae at one point and thought he'd really screwed up. After a bit of recent to-ing and fro-ing and some 'interesting' investigations, conclusion is that the CT report was incorrectly interpreted! A huge relief, followed by another WTAF moment!

@WTF99 I found the cold cap uncomfortable, certainly for the first 10 mins, but then bearable. A couple of paracetamol and/or ibuprofen before it goes on helped me, also you can slip ear buds in, listening to a relaxation app or podcast took my mind off it. Re docetaxel, my oncologist agreed that I could have weekly paclitaxel instead, it can still be a tough regime but maybe not as harsh. It does mean more time having treatment but just mentioning it as a consideration.

, , to all x

[DCICarolJordan]

Hi all
Have been lurking a while but thought I’d pop my hand up and say hi 👋
I’m 33 and was diagnosed with stage 2 (unfavourable) Hodgkins Lymphoma in February this year - I am half way through 6 rounds of ABDV chemo (nodes in my chest were too bulky for radio). I live with my partner and one year old and I’m currently waiting at a and e with fingers crossed my weird swollen knee doesn’t indicate a blood clot 🤞

[Brassica]

Hope the knee is ok DCI and welcome.

Flippy, I do remember that episode with your coil - so it turned out not to be there? Thank goodness I guess but you could have done without that. When your treatment ends will you be on a programme of follow ups?

Thanks for the comments. I’ve finished EC and so at least I know there’s no more of that to come, but I start 3 months of weekly protocol next (Paclitaxel and carboplatin) which obviously allows for no let-up and I am reading that it can be pretty tough. So far I’ve always had a week of good energy levels between cycles but if the new one hits me as hard then I’m just scared I’m facing 12 solid weeks of being laid up, unable to enjoy food or take part in life generally. Obviously I’m worrying about something that hasn’t happened and might not, I’m just a bit worn down I suppose. I keep dreaming about the food I would eat if I could taste it...and yet it’s all repellent when put in front of me!

[SheStoodInTheStorm]

Hi all. Sorry I've been MIA.

I start radio on Wednesday. Can't say I'm looking forward to it! Last time it was pelvic and was ok, I'm worried the radio to my chest is going to come with other problems. I think the hardest bit is that I actually feel fine at the moment.

[gib1973]

Really struggling today - is post chemo blues a thing??? I have been so focussed for so long in just getting through chemo and now I have (and it was amazingly successful) I just feel a bit down I guess and lost. I have a lumpectomy on Thursday so when that is done I will be 2/3 of the way through. Had a massive argument with my sister - mainly my fault although she isn't blameless. She has blocked me on social media and I haven't got her phone number (using an old phone as my newer one is broken). Have sent her some flowers which will hopefully clear the air for some communication. Anyway tomorrow is a new day but feeling pretty shitty today :(

[noodles44]

Hi,

Thanks for the new thread Brassica

Just to introduce, I was diagnosed with breast cancer last June. I also had lymph node involvement (I noticed my cancerous node not the actual tumour in my breast)
I had 3 x fortnightly EC chemo which I pretty much felt constantly nauseous from, followed by 4 x Docetaxel, perjeta & herceptin (3 weekly) I am still having herceptin now as an injection in my thigh.
Docetaxel was mixed for Me, I had a couple that I felt dreadful from, but a couple were ok, I found the nausea from the EC more debilitating, plus as the Docetaxel was 3 weekly at least I had 10 days of feeling reasonable.

I had my op in Dec (lumpectomy and node clearance) and radiotherapy (×20) in Feb/March.

I too felt really flat after chemo stopped Gib1973 apparently it is quite normal to feel this way, so be kind to yourself. It is made worse by everyone congratulating you on finishing the chemo and you just feel completely flat.

I haven't posted much lately as my trearment is more or less done now, but do check in/lurk from time to time & happy to answer any questions about any of my treatment. I cold capped for my 1st 2 but my hair started to fall out at the front & I was utterly miserable at my thin comb over type do, so shaved it off and felt much happier as a result. It was really painful for about the 1st 10 mins or so & then you just get used to it. I used to take a wrap type scarf to chemo for extra warmth.
I also found pink grapefruit cordial with fizzy water a refreshing drink which tasted as it should do. I went off tea and coffee completely and my food tastes went very bland. I usually like spicy food, but the inside of my mouth protested if I ate anything remotely hot. There is a mouthwash/meds that can be prescribed if your mouth is sore that helps.

Also, if your nose gets sore on the inside as new hairs grow back, the doctor can prescribe an antibiotic cream that is amazing....

Have a good day Lacies

[gib1973]

Morning all - feeling a lot better today. Just got today at work then 3 weeks off sick as I have got my operation on Thursday.

[Dulcedelecherocks]

Our lovely purple is being laid to rest this morning. Please spare a thought / say a prayer for her and her family. I miss you my friend. Fly high x

[Brassica]

I was going to ask whether purple’s funeral had happened, thanks for letting us know Dulce. Bless you Becky, free from pain now.

[SheStoodInTheStorm]

[PenguinsRabbits]

Thanks for letting everyone know Dulce Hope Purple is at peace now in a land of unicorns and non-allergy producing rabbits with Leslie eating cake. Thinking of her family especially her 17 year old son.

[TwitterQueen1]

Also thinking of our lovely Becky / purpleunicorns as she is laid to rest today.