Cancer Support #70. Please post on this thread, not #69, If you have cancer or are undergoing tests for cancer. Rant, rave, scream, cry – whatever helps. Supportive lurkers for Leslie welcome on #69.

[TwitterQueen1]

Thread #69 is filling up with messages of support for one of our own who is very seriously ill. Leslie told me a few weeks ago that she didn’t want any such messages to get in the way of those who need support through their cancer treatment so we are starting a new thread just for those who do have cancer or who are having tests. Could we respectfully ask lurkers and supportive posters to confine their comments to thread #69? Thank you.

We normally start with a brief introduction to our cancers – I’ll kick off. Ovarian cancer dx March 2017. Now on third-line treatment with a trial providing targeted and chemo drugs taken orally.

Hi Brassica

Welcome. You will find lots of support here. Quite a few of us are going through breast cancer with various types of treatment. I didn’t know until last July when I was diagnosed that there were different types of breast cancer .

I am HER2 positive and lymph node involvement also for me. If you have any specific questions or just want to post with any worries, there will always be someone along to answer xx

Hi brassica I am a relative newbie too. Diagnosed on 15 March, bi-weekly chemo started ten days later. Like you the word aggressive is bandied around a lot.

Glad the chat went ok meerkat. I had to watch a DVD that was pretty silly and definitely felt boxes were being ticked but all the oncology nurses are lovely.

I am using the cold cap but my hair is starting to fall out. I cried at my oncologist appointment yesterday but the good news is that apparently from a clinical perspective my blood tests last week show that my immune system is surprisingly strong and I am tolerating the Chemo very well. I will wait a few more weeks to see how much hair I lose before I decide whether to just accept the loss, buy a wig and save myself two hours each session or persevere. Being able to sort the wig thing in advance sounds good. I am off to Melbourne for the Easter weekend and am glad that at least I will still have hair for that 😊

Hi, may I reach out for a hand hold? I'm 2 years post menopausal and for the second time in 6 months have had some bleeding. Last time it was a tiny amount but I was fast tracked through the suspected cancer pathway. A small polyp and slight thickening of the womb lining was identified, but biopsy was fine and in fact all appeared to have sorted itself out by the time the consultant signed me off. This time, I've had more significant bleeding - 3/4 days of light period like bleeding. I've again been referred and had my ultrasound today. Also had blood tests done and am waiting for the hospital appointment to come through. What's freaking me out though is that this time I am definitely getting mild pain/discomfort in my pelvic/abdomen area. I've lurked on this thread since my last scare and know how fabulous you all are at the virtual hand hold, so I hope you don't mind if I join?

Hello blimpy hope you’re holding up okay. I’m finding waiting for all the tests and results really hard too. I think it really intensifies all the worries about symptoms and your mind just races off to to the worst scenarios. I really hope this is the toughest part for you and it ends up being something easily sorted, but until you’re there I think it’s impossible not to worry. So a handhold here from me

Thank you Roar. You are quite right - my imagination is running away with me and every twinge I have seems ominous right now. I do think this thread is really helpful though - the support and wisdom you all provide to each other and whoever wanders along is wonderful. Hoping you are doing okay today x

I find it's helpful to know there are all sorts of people getting through all sorts of things. At the moment I feel so completely alone and isolated by what I'm going through whilst trying to be normal for my children and at work etc (not that I'm doing a great job of it anyway!). It's so nice to have somewhere to go (even just online) where it feels like there is a life to be lead whatever way things go. My consultant who did my recent biopsy made it clear he expects me to be diagnosed with melanoma because of how it had grown in between appointments, which I'm trying to be grateful for in terms of the heads up, but slightly upset by as until it's actually confirmed all it's really done is added to the terror. Anyway... on we go!

I entirely get what you are saying about trying to be normal with people but feeling anything but. Hopefully if it is confirmed as melanoma, then you will at least get a clear plan of treatment you can focus on.

Hello Blimppey and Brassica
We'll keep you company along the way and hope we can wave goodbye to you soon.

I'm starting cycle 5 of my drug regime tomorrow but we still don't know whether or not it's working. The last scan (first one on this trial) in mid-Feb was inconclusive and my results from last week are not ready yet.. This is third-line treatment for me so it's pretty significant..

At least I've got HAMILTON to take my mind off things. Did I mention I'm going to see it on Saturday?

How are you doing Purple?

I still haven't had my 'couple of days' appt phone call and am now worrying in the wee smalls. Shitting through the eye of a needle - but that's normal for me. Was galvanised into asking an acquaintance I really admire for lunch. She said yes and we had a ball.

TQ. How many cycles are you due to have of this drug? Hope everything goes well today.

Enjoy Hamilton. Would be interested to know what you think of it (I haven’t seen it).

Xx

TQ that uncertainty must be really frustrating. Hope it goes OK today. I’m glad you’ve got Hamilton to look forward to.

Hello to everyone waiting for tests or results. Rawroar I know what you mean about an honest consultant being helpful and not. After my biopsy (which was between Christmas and New Year) he told me he was “very concerned”. Thanks pal! It made for an “interesting” New Years Eve party.

I’m a bit down at the moment. I was sent home from my second immunotherapy appointment yesterday because of the liver function part of my blood tests. I need to go back again next week. My brain is now catastrophising that (a) I have been left with permanent liver damage or (b) I’m not going to be allowed to continue with the treatment (or both!). I know that these outcomes are unlikely but that doesn’t stop me thinking them! I’m going to try to call my nurse to get a bit more info. But grrr.

TQ - I’m at my DMum’s and she has lovely cheese including Black Bomber!

I have also completely lost my tolerance for red wine (even small amounts bring evil hangovers) but I’m still ok with white and with spirits. Congeners, I guess.

Booze is permitted for me (I’m also on an inhibitor) but meant to be in strict moderation (which usually it is).

Hope appt goes well. I have 2x outpatients next week

I'm on these drugs until they stop working - assuming they are actually doing something. Then I think it will be taxol again and then we run out of options.

Dame can you ring up and chase?

In a 4 bed ward again but no-one is talking.

TQ you have probably already answered this but what trial and which hospital are you at? Mum is going to royal Marsden, bit of a pain as has to go ever tuesday and its a long day as they live in northampton and have to travel to london! Leave at 8am got home at 8.30pm on tuesday.

Mums also decided to have a Port fitted as they are really struggling to get in to her veins, they werent very good to begin with so 2 lots of chemo has run its course. Thst not till 10th may though

Snow if it comes to it shaving your hair off won't be as bad as you're expecting, it's much better than your hair falling out in clumps and you'll feel more in control. And you'll look much better than you think you will with no hair. I didn't even bother with wigs and just wore a beanie hat when it was cold

Another handhold from me Beanie. I have cervical cancer and TQ has ovarian so if you have any questions feel free to ask. Hopefully it will be nothing serious and you won't need to be here for long

Dame can you ring them to find out what's happening?

Toofar I was sent home a couple of times as my bloods weren't right, they may just reduce the amount of chemo you're getting if needs be

I'm not too bad TQ. Just a bit slower than usual but I'm managing to get out and about in my wheelchair. They still can't work out why my leg is so painful, I had a CT scan and nothing showed up so they think it may be neuropathy as my left foot is numb too so I keep tripping over myself Other than my leg I feel surprisingly ok at the minute.
Did they say when you'll get your results from your latest scan?

Humph... My post disappeared.. My trial is called Octova mrs and I'm at the Churchill in oxford. Might be worth seeing if your mum's trial is available here?
Results after Easter purple. are now testing.

If you don’t mind me asking toofar where are you having immunotherapy? I hope it all sorts itself out quickly and you can get back to it.

Thanks RawRoar - I’m being treated at Guys Cancer Centre

Well I think I have positive news. I was told by the GP to chase up the hospital referral and have just spoken to them. It seems that they have looked at my scan results, and my blood tests, and have "downgraded" me. I am interpreting this as probably good news - and not them simply finding a way out of having to give me an appointment in 2 weeks. Tediously, the GP has to make another referral to gynae - why the hospital can't simply do it is beyond me! Thank you for the hand hold and I'm sure you won't mind if I hope I don't need to come back on here. Wishing you all the very best - I am genuinely awed and moved by the strength, support and compassion shown on this thread.

That's great news Blimppy! Off you pop and hope we don't see you again!

The medics are checking me for diabetes / thyroid problems. Glucose was high-ish but ok, thryoid tests won't come back til next week. I'm suffering with chemo brain, which has got worse lately and cognitive impairment is a symptom apparently. I struggle with finding words and last week I couldn't figure out how to enter my pin number to pay for petrol at the pump. I didn't know whether to look for 'enter' or a 'green' button or what... I couldn't figure it out. And then I was buying a new hoover - I got the product number but couldn't figure out why the assistant was saying it was the wrong number. He said our numbers aren't like that... Now I've been in Argo a million times and know very well you have to fill in a coupon with their ref number, but I couldn't understand...

Oh the joys...

toofar is it the keynote trial? Just saw consultant again today who said it’s really promising. Hope you’re feeling okay?

Strength and good thoughts to everyone tonight

RawRoar - I’m having Pembrolizumab (Keytruda) as adjuvant treatment to try to prevent the melanoma returning (they are happy that my surgery removed the active cancer but I was left with some pre-cancerous cells). I don’t know about any trials I’m afraid

Would you mind if I pm’ed you toofar?

RawRoar - no, that would be fine x

Brilliant news Blimppy! I hope they manage to figure out what's wrong and you get sorted out soon

Ah TQ I do not miss chemo brain. I spent a good half hour walking round the car park once thinking someone had stolen my car before realising that I'd bought a new one and I was looking for my old one