Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

Good Evening all. Glad to hear the veins cooperated today @MrsPnut and eventually for @HauntedDishcloth. Hope the Kadcycla has been uneventful.

Warm wishes to @ChocolateandCheese for your next stage. I can imagine only too well how hard it must be for you and hope you can find some peace of mind.

@HauntedDishcloth I am on anastrozole which seems to cause joints aches and morning stiffness but these quickly disperse if I exercise when I get up. I think my other symptoms of mild nausea and dopeyness are caused by the Herceptin. I will find out when I finish treatment in about 6 weeks.

I have been cycling many miles and trying to avoid Covid which is sweeping the South West since the Boardmasters festival. I am testing daily after a close shave but daren’t go to visit my DM this week. Essentially I am staying outdoors and avoiding people because every time I go indoors I find I have had a Covid contact.

Stay well people!
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@HauntedDishcloth I was on anastrozole before and will go back on it after chemo finishes. I didn’t have any real side effects from it but I was having so much other treatment causing problems that I probably wouldn’t have noticed.

Thanks for the thoughts and good wishes all x.

Wig question - does anyone know a good wig shop that can supply wigs in large size? I went to one shop last week to have my head measured and I need a large one but that shop can only find four wigs in a large size and none of them are remotely my style.

I have a large head, almost 60cm in diameter. I got a Rene of Paris breezy wig that was very snug when I had hair but fitted fine once it had fallen out. www.simplywigs.co.uk/breezy-wig-muse-collection-rene-of-paris.html
I tried mine on at a local wig store and the fitter was really lovely.

@TopOfTheCliff
My 69 yr old sister-in-law has caught covid. Lives in Exeter, double-jabbed, super-fit, only human contact within time-scale was at the swimming baths. Before symptoms emerged, she passed it on to wife of couple who came to dinner. Both dps escaped. Main symptoms were streaming nose and bone pain. Just when she thought she was recovering, lost taste and smell. No cough.

I know this is anecdotal, but I think delta seems be behaving differently. Other cases in the family, scattered throughout the country, seem to show that women have lost their advantage re susceptibility.

@thereisonlyoneofme
How are you getting on with the new drug? Hope side-effects are less brutal than chemo. Incidentally, when I had my TAH, I asked the doc whether I'd notice having no ovaries. Same age as you. She said No, but I did. Mild menopausal symptoms like hot flushes and mood swings. Might be something to bear in mind when you're feeling low? It always helps me when there's a reason for what ails me.

Best wishes to everyone else, especially @ChocolateandCheese and her family.

@Thymeout.Hi Ive only been on it less than a week, so far so good. Got to have bloods done tomorrow. No hot flushes etc, been past that a long time ago, and I actually didnt have symptoms like that when going through menopause!

Thanks @MrsPnut for the wig advice. That website has one in a style very similar to my real hair, think I might just order it as I can return it if it doesn't suit. I can't get an appointment with a wig salon until after chemo starts and I've no idea if I'll feel able to drive that far.

I just need to vent. I feel so sick and so unwell, but my GP is being so vague and it's really pissing me off. My bloods were lost due to 'processing error', so I've been given the earliest appointment which is Thursday so a week after they lost them. My chest X-ray has something on it and I know that because my GP rang and asked me to make an appointment to talk about the results and then said 'we should wait for the outcome of your bloods so we know what we're dealing with'

The worst thing about this is I work with young teenagers and children who have been diagnosed with blood cancer on the teenage cancer trust ward. I know what they're looking for.

I went for my X-ray and I knew the radiographer, I asked him what it looked like and he turned off the screen and said 'you'll find out when your GP gets the report, sorry Bakewell we can't discuss what I've seen'

I just want to know what I'm dealing with now. I need to plan

@SewingBees

Hi everyone, lurker here, first time posting to this thread. I've realised reading through that I need to be a part of a supportive group of people who have some idea of what I'm going through. And to give support in return too.

I had a 4cm lump removed from my breast just over a month ago, along with 3 lymph nodes. The lump was larger than scans had shown, though it was removed intact and with good margins. Unfortunately a small nodule was also found in a lymph node and cancer cells in the other two. After oncotyping (at least part of me got to travel internationally this year) I've been recommended chemo and I start in a fortnight's time. Up until now I've managed to stay fairly cheerful and positive but finding the worry about chemo to be taking over. Hat's off (no bad pun intended) to those who are going through it or have been through it.

I'm on holiday this week and was hoping to forget about it all and have a lovely time with my husband and 5 year old, but actually having more time to think hasn't been good for me. I went to a specialist wig shop yesterday and the lady was absolutely lovely, but she did keep telling me how wonderfully thick my hair is which wasn't entirely helpful given I expect to be bald a month or two from now.

I think the worst thing is that at every appointment/results discussion things have turned out to be worse than first thought. At the beginning I was told it was very unlikely I'd need chemo.

On the positive side though my surgery was relatively minor and I recovered well and quickly.

I'm very rarely all 'me me me' - this post is definitely unusually self absorbed, which I guess just reflects how tough this stuff is and how much it affects you. Love to all.

Hi @SewingBees so sorry to hear of your diagnosis. Just to say that you might look into cold capping. It’s not for everyone but the results can be exceptional and means hair loss is not inevitable. Been there and done that and am still here five years on. Sending the best to you and all MNers with cancer.

@Bakewellisntjustacake It's so frustrating when you know they must have the results and are not telling you, and the stress it causes is immense. I hope you haven't driven yourself too mad waiting it out.

@SewingBees I'd read about how ones treatment can keep changing and found it was true in my case. I naively thought I might be "done" around now when I had my first appointments around last christmas time but it won't be until about two years after diagnosis given the current outlook. Keep posting how you feel and with any questions on the chemo.

@MrsPnut and @TopOfTheCliff Thanks for info on the Anastrozole. I'm very achy already so am worried about that potential side effect. I think it's because I'm not very active but I'm planning on getting myself moving when DC back at school. I've enrolled in a movement/fitness programme run by the Genesis care centre I went to for my rads. I think you mentioned going to one MrsPnut. It's not that close to me but I can do it via zoom. Also looking into Nordic walking run by local Maggies centre. It's going to be quite a shock to my system!

@HauntedDishcloth it seems a bit interminable with the full year of treatment with Herceptin. I think my friends are a bit shocked to realise I am still having treatment when they have forgotten and moved on. I have to remind them I’m still Extremely Vulnerable and won’t be joining them as Covid rages around Devon. I’m bored of it now too.
The exercise programmes are wonderful but you just have to go at the pace you can manage. My Physio is making a presentation about me from wheelchair bound chemo patient back to active endurance cyclist and sailor. He has worked a miracle getting me fit again and avoiding a hip replacement so far. I came to the sorry conclusion that whether I get out and exercise or stay home on the sofa moaning everything still hurts so I might as well crack on!
Best wishes to all
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@Bakewellisntjustacake The waiting and uselessness is the absolute pits. Offering a handhold.

I'm day 3 post first Docetaxol and my legs are so painful. I also have the horrible taste in my mouth and everything is yuk. I sailed through the side effects of cisplatin and FEC so I knew that I'd likely catch them all on Taxol. I'm alternating paracetamol and ibuprofen, I do have a couple of steps up in painkillers to go if I need them but I am battling with constipation from the steroids and don't want to tip too far the other way with laxatives.

My extravasation site is tight as well today, it's all just a bag of wank!

Hi, I hope you don't mind me joining in as I am still in the process of diagnosis. I was hospitalised for a week a few weeks ago with pneumonia and large unprovoked bilateral pulmonary emboli. (My d-dimer was 2704 at the time of admission). The consultant was concerned that there may be an underlying malignancy as the clots were unprovoked, so she arranged for me to have blood tests, a 24 hour urine test, CT scans of chest, abdomen and pelvis and a transvaginal ultrasound. A 6.5cm cyst with solid components was found on my right ovary and fibroids in my uterus (she said it was lobulated). The CT scans didn't show anything anywhere else. I also have had some watery/brown staining on my underwear for many months, but hadn't gone to the doctor, stupidly, as I thought it was a skin irritation - there wasn't any blood coming from the vagina, that I could see. I'm post menopausal - last period when I was 38, I'm now 59. The consultant said the cyst needed further investigation and I was referred to Gynaecology and I have my appointment with them on Monday coming. I've also had the CA125 blood test done, which I haven't heard the results of as yet. I'm really worried that they tell me that I do have ovarian or uterine cancer, but can't have a hysterectomy due to my obesity. I know I shouldn't be getting ahead of myself, but just needed to vocalise my thoughts. Does anyone know if they will already know if it's cancer, just by the look of the transvaginal scan? Do you know if very obese people can have surgery for cancer? Thanks for listening.

@TopOfTheCliff Your fame is growing

@MrsPnut Ugh, sorry to hear you're being laid low with the latest chemo. The steroids were the worst bit of that particular lot for me. I seem to have escaped anything horrid from the Kadcyla so far except the drippy nose has made an unwelcome return.

@Whatwillbewilbe I can't answer your questions but welcome you to the thread even though I understand you'd really rather not be on the thread at all. You have a philosophical username! Whether or not you'd be eligible for surgery, you won't be abandoned as there will be other options to pursue. Waiting until you have more of an idea about what's going on is truly awful - we've all been there . Hopefully there will be some other posters about that can reply to you more specifically.

@HauntedDishcloth thank you for your kind words. The waiting is awful and I know that I really do need to be patient for another few days. The username seemed appropriate - I keep telling myself that worrying won't change the outcome either way.🙂

@Whatwillbewilbe I used to work in oncology theatres and BMI didn't factor into the surgery. It will flagged up as more of a risk but the anesthetist will see you at pre op and go through that but we've never cancelled an operation due to weight. Cancer trumps bmi always

@Bakewellisntjustacake thanks so much for telling me that it's very reassuring to hear. It's been worrying me so much. I'm trying to eat healthily and my appetite has diminished anyway, but it's going to take a long time before I can reach a healthy BMI, so this really puts my mind at rest.

@Bakewellisntjustacake did you have your appointment today or is it next week? The waiting to find out is awful. I spent the time last year weeding my allotment which soothes my soul.

@Whatwillbewilbe welcome to this lovely thread which nobody wants to be on. Let's hope your lumps are benign and your stay is short. But even if they are not once you have a plan things will feel more controlled.

I am a long term inmate here as I had a nasty little malignant breast lump last year that ticked the boxes for the Kitchen Sink Breast cancer regime.I am slowly plodding towards the end of my fourth mode of treatment just two left to finish soon (zolendronic acid and anastrozole). I broke my ankle during chemotherapy so was a miserable wreck at the start of the year but am now bouncing back to fitness with Tiggerish enthusiasm. My main issues are extreme pain in lots of joints due to drugs and arthritis and some nausea and tiredness which I hope is the drippy nose Herceptin. I benefited huge from the SafeFit trial with a lovely personal trainer on Zoom. Now I go to the local gym for physio and fitness classes and cycle miles. I have lost a lot of weight but it has stalled recently due to excessive cake intake. I have lost my motivation now I am feeling fit and well. And I do love cake!

Regards to all going through the mill.
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@TopOfTheCliff I had to have repeat bloods done today as they lost the other one last week, emergency mri tomorrow as they want to see what the shadow is they saw on the X-ray. Probably no results for a week or so 🤦‍♀️ I feel like I'm going mad here

@TopOfTheCliff thanks for the welcome. I'm kind of preparing for the worst but hoping for the best, so that I'm as mentally prepared as I can be - I have a bad habit of ignoring issues until they're serious.You all seem to be a lovely supportive bunch of people, I'm so glad to have found this group 🙂

You've really been through it, by the sound of it. I too have arthritis, so can empathise with you there.

@Whatwillbewilbe welcome to the nicest thread on MN, with the kindest ladies you will meet, hoping your stay here is brief. I have ovarian cancer stage 3c which was an incidental finding on a CT scan to check my spleen and liver as part of the investigations for a blood cancer, which came back negative. It did pick up the growth on my ovary and I went on to have a transvaginal scan. No, they can't tell if it is cancer just from the transvaginal scan, you would need a biopsy for this. I'm hoping your appointment on Monday brings you some reassurance, the waiting and wondering is the worst part of all of this.

I am going into hospital today to have a second attempt at this biopsy for the nodule on my liver ligament. The results of the MRI were inconclusive so they now have decided to do the biopsy after all. I am really keen to get this sorted out as my maintenance chemo is on hold whilst all this is happening and I am getting very anxious.

Sending everyone love xxx

@FizzyOrange thanks for your encouragement. I think this weekend will feel like forever, but hopefully on Monday I will have an idea of what the plan is. As I had a premature menopause - I was 38 when I had my last period - I'm now 21 years postmenopausal, the cyst has solid components and is 6.5cm and I had the blood clots in the lungs, I'm presuming they will want to take it out and biopsy it. Anyway, I better not try to second guess things!

Good luck with your biopsy today, I hope you get the best result possible and can move on to your maintenance chemo quickly. xx

Big wave to all, especially those waiting for results.

I still feel so shocking after my chemo last Tuesday and just need to have a giant moan. My oncologist decided to give me my previous doses of Docetaxel, Oxaliplatin & 5-FU, despite having lost over 10% of my body weight which would usually mean a dose reduction. I queried it, pharmacy queried it twice but I was reassured it was fine. I actually stopped the 5-FU early myself thank god as they have completely obliterated my immune system. My neutrophils are 0.3 after the filgrastim. I can't eat and I'm lying in bed most the time. The tachycardia has gone along with the liver pain and skin flushing but im in day 11 now and still feel rough.

The biggest bummer is the psychological impact this has had and im extremely upset about it. My next chemo is delayed and I've decided to delay it further until I can at least eat again. I've lost more weight. My size 6 nighties are now baggy and i keep bursting into tears all the time. I honestly feel like the treatment might kill me before the cancer does.

@quinin I'm sorry to hear that you're feeling so ill at the moment, that sounds absolutely awful. I hope things settle down a bit for you and you're at least able to eat something. Take care. x

quinin that sounds bad .I had a jej tube inserted during my op in case feeding was necessary ( it was for a few weeks ) .That degree of weight loss would have triggered dietician intervention and the start of feeding .
I hope you have access to this type of support .What has been suggested to deal with weight loss ?Are you in the UK ?