All the fives... Tamoxigang cancer support thread 55

[WhatWouldLeslieKnopeDo]

Welcome newbies and oldies to our 55th thread!

Our previous thread is here.

If you have any sort of cancer please feel free to join us. We are always happy to offer a hand to hold if you're waiting for test results too.

There are no stupid questions here, and there will usually be someone who can answer, or point you in the right direction.

Yep, still blue here, 8 months on! I thought they might cut the blue bit off when they did my WLE but even that didn't get rid of it

Chewing, I think you have a good attitude to it, just look to the next little stage and get through it, and before you know it you will be at the end.

Feel a bit of a fraud posting here as I don't have cancer and my dh who the post is about doesn't either but he has been on chemotherapy tablets for the last ten years and so my question really relates to that.
Dh has two blood disorders, one that makes his platelet count high and one that makes his red blood count high as well, he's had these disorders for fifteen plus years and was given chemotherapy tablets when other treatments failed to bring his counts down.
Besides this he has diabetes that is currently controlled (or more accurately not at the present time) by tablets.
Dh has been generally unwell for a good three months, at his last hospital review (where he didn't bother to tell them he'd been feeling awful) the chemotherapy had hammered his platelets and his level was the lowest it has been since diagnosis but still above normal and his rbc was a low normal.
Two weeks later I persuaded him to see GP as he is constantly asleep and the sweating is profuse and his diabetes was showing very high readings.Repeat blood tests fundamentally came back with red crosses on pretty much everything but the worrying ones were the diabetes which was sky high (medication doubled) his red blood count was low and red blood cells were large and his liver function tests were "very worrying" bearing in mind dh is teetotal and has been for more than twenty years and his cholesterol levels have rocketed (statins now doubled)
Gp has ordered repeat blood tests and he's to see her again on Thursday and she has referred him back to consultant.
What he didn't mention to GP is that he is at times muddled, confused,forgetful because he denies he is but he forgot that it had been our ds's birthday the day previously as he'd woken up with.no recollection of the previous day.
So my question is if you've made it this far, is it most likely that the chemotherapy is causing the issues rather than his blood conditions accelerating (risk of leukaemia/lymphoma) and does chemotherapy cause confusion or is that more likely to be the diabetes?
Thank you

Hello insan and so sorry about your DH. I am sure you will be getting many more informative replies from the others here, but I can tell you that yes chemo does in fact cause confusion, sleep disorders, inability to focus and memory difficulties the term chemo brain is frequently used in this sense where the mind seems foggy and one's overall mental focus is affected. I do not know if all chemo is the same as your DH may be taking a thpe that differs from we here have had or re taking. Is he seeing a doctor on a frequent basis to report his side effects etc? There may be some simple measures / mental exercises that could help.
Best of luck.

Morning all.
Hi insan. I'm afraid I can't offer any advice as I haven't gone through chemo (yet).
Talking of chemo, I am thinking of shaving my head in advance of any treatment. I have fairly short hair anyway that is now a lovely white colour at the roots so it would look quite good I think and would save on hair dye

Have they said you will definitely need chemo then chewing?

I had a bad appointment today. The capecitabene is not stopping progression, so I'm moving to weekly taxol. Gutted.

Yes,probably Jo. Plan will be finalised after the next biopsy results.

Sleepy, I'm very sorry to hear that. I can't pretend I understand the drugs but I do understand that's definitely not the news you were hoping for and it must be very frightening.

Sleepy I can't think of anything useful to say, but sending you love. Fucking, fucking cancer

insan1ty your DH really needs to be honest with his team about side effects. Some might need further investigation. And there are things that can be prescribed to deal with many of the side effects, or sometimes the doses can be adjusted a bit. It all sounds quite complex, so it's probably better to speak to his specialist than us guessing, but chemo can cause all of those mental side effects. Though as if it is a new issue then it does need to be checked out :)

chewing sorry to hear your news. Good luck with the biopsy! if you're feeling positive, that's great, but don't put pressure on yourself to feel any particular way.

Hi Leslie - how are you doing today?
I am swinging between feeling positive and then really worrying about things but I suppose that's normal. Once I have the other biopsy and know how the treatment will pan out I expect it will be a bit easier. I have had to stop taking HRT which won't exactly help my mood swings either.

I'm alright thanks chewing :) starting chemo tomorrow so lots of things I've suddenly remembered I ought to sort out!

Anything goes feelings-wise, really! That sounds quite normal though. It is definitely easier once you have a rough idea of what will happen and when. A pain about the HRT though, on top of emotions from the diagnosis.

If anyone does find themselves struggling at any point, go to your GP. They will be able to help :) mine has given me some beta blockers. They're fab. I still get panicky thoughts, but I don't get the pounding heart and blood whooshing in my ears, so then I feel like I can deal with the thoughts rather than just being trapped in the physical reaction. Between them and my extraordinary ability to ignore inconvenient truths, I am doing quite well anxiety wise now

mrsrhod I forgot to reply before, but I managed to squeeze in a few days in Sweden with my parents. We had a lovely time :)

Glad to hear you managed to get away Leslie. Sweden is definitely on my to do list, it looks gorgeous. Is your chemo going to be a new drug for you or something you've had before? Hope it doesn't cause you too much trouble.

Chewing, wildly swinging emotions are perfectly normal. Just let it wash over you and don't feel guilty about whatever you're feeling. A proper plan will help.

Hope your chemo is not too awful for you. I have medication for anxiety but I'm not sleeping too well. The doctor did suggest sleeping tablets but I'd rather not take them. I am having afternoon naps though to compensate

Sorry to hear that Sleepy - I've been thinking of you and Leslie often. And Rust.

So sorry sleepy..sending you lots of virtual hugs.

Sleepy I'm so sorry to hear that. I'm really hoping you get a better result on taxol.
Leslie all the best for tomorrow. I hope the chemo is effective and the side effects are manageable.

I had my last scheduled chemo today. I'm tired but happy that this part of my treatment is over because I have really been struggling with fatigue for the past few weeks. I also have some peripheral neuropathy, but can still do buttons etc. I see the onc tomorrow to discuss my on-going treatment. Last time she said she hadn't decided whether to give me hormonal treatment, because my tumour was very borderline (3/8 ER, PR neg). So I shall have to see.

Congrats mysillydog! You can now turn that page. The fatigue will take a while. Take good care of yourself, drink plenty of water, rest and let your body get over the chemo and do not push yourself.
I did not have high ER receptor levels, but was still told I may benefit from tamoxifen. I am sure your oncologist will want what is best for you.
Waving to everybody else.

The last few weeks have been tough. I have needed to lie down after doing very basic housework such as cooking and have been getting very breathless climbing stairs, and have been running temperatures of 38+ a few times a week because of a virus but my blood has been perfect. I have spent far too much time in bed.

Royal, what was your ER score? I really hope that the onc tells me what to do regarding hormone therapy rather than letting me choose. I hate it when I have to make a decision on something I know very little about. I have lots of hot flushes at the moment, so I feel like I am going through a medical menopause caused by the chemo, but I don't know if this will ease off over time.

I'm so sorry sleepy and hope the taxol's effective. Thinking of you.

I hope tomorrow's gentle for you leslie. Glad to hear you had a few days away - thinking of you too.

Happy to hear you may get a break from the thermometer now mysilly! Hope the SEs aren't too severe with this one and you can rest and enjoy a break. Sorry I can't help on the tamoxifen front as I was told I should definitely take it - here's hoping the onc advises helpfully.

Waving to all.

Sleepy, fingers crossed the tax is more effective for you, I can't think of anything to say which will make you feel better, but you are in my thoughts, and you too Leslie, hoping the chemo doesn't give you too many side effects.

I got a compression sleeve today to help a bit with the swelling in my arm. I was a bit mortified at the thought of having to wear it because it isn't exactly attractive. However, it isn't as bad as I though it might be, it's very thin and quite a good colour match so not particularly obvious.

Waving to everyone waiting for results and treatments.

Hello everyone

I hope I'm posting in the right place. I have been referred to the breast clinic as I have several lumps/masses in my left breast. The appointment is next Thursday 23rd.

Looking for information on what to expect at this appointment please and the following stages.

Even more worryingly, I have got myself in a state thinking that various other aches and pains I've ignored recently or put down to getting older are signs that my breast isn't the only 'problem' eg pain at bottom of rib cage, pain at bottom of spine, back pain, hip pain, headache all over scalp, generally feeling awful/fuzzy/foggy when previously in good health...

Hope I can offer help and support in return.

Thank you for reading.

A very quick dash in to say hello. Thinking of everyone.

Crap news Sleepy. Sending much love.

Hi Wee- Glad hot flushes are a bit better. I am having acupuncture at the moment and that seems to be helping.

love to all waiting for results and going through treatment.

Jean- while I was waiting for results everything ached and hurt. The hip pain I had became worse and then once I had the CT scan and the all clear for the bones the pain went away. Stress and worry can give you lots of symptoms.

Hi Jean and welcome. Yes, you are in the right place. I haven't had breast cancer, so I can't help on what to expect, but hopefully someone else will be along shortly :)

Thank you everyone for your kind thoughts

mrsrhod definitely go to Sweden. It is stunning. I am a huge fan. The only thing I didn't like was all the smoking

One of the drugs is the IV version of the oral chemo I had previously, but the others are new. I saw a nice oncologist the other day and she thinks this regime is generally better tolerated than the one I had before, so fingers crossed :)

Waving to everyone. I am thinking of you all though am a bit frazzled so I don't have anything useful to say.

Love to sleepy. Sending fuck-off-cancer vibes to you and hoping the weekly tax works better for you. When will that start?

apologies for just jumping in, i started a thread but realised i'd probably be better just asking for advice here so have copied and pasted my post below...

long story short but am going through investigations for sarcoma, there is a swelling in my knee which has had a growing hardened lump inside it since xmas. have had 2 ultrasound scans, an mri (which i'm getting the full results for on monday), and was called in for a biopsy today.

my leg is ok, only really hurts when i bend it, i have steri strips on the wound and a big plaster over that. its in quite a fleshy place, just above my knee. my leg was already swollen there, and now it it even bigger. they didn't give me any advice today about looking after it, anyone know how long i should leave the steri strips in place? and when i should take the plaster off?