We're not that old but we're losing our hair... Do you still need us, now we're sixty four?! - CANCER SUPPORT THREAD 64

[WhatWouldLeslieKnopeDo]

Me again. Even attempted a vaguely witty title. Hopefully not in poor taste

If you have cancer, or you're waiting for test results to see if you do, then please pull up a chair and introduce yourself!

Some of us have been here for ages and others are just going through the testing process now, so there's bound to be someone who understands what you are going through.

Whether you are a newbie or an oldie it can be helpful to post a quick recap of your diagnosis/treatment to date just so that other posters can keep track without having to search previous threads :)

If you have a relative who have cancer then there is a thread just for you in the Life limiting illness topic, with lots of others who are sadly in a similar boat and able to support each other. Other threads in that topic might also be of interest. We wish you and your loved one all the best

Below are some links that might be useful. But feel free to ask any questions at all. Nothing is off limits here.

Cancer patients are eligible for a medical exemption card for prescription charges - there is some information on the NHS Business Authority website or you should be able to get the form from your pharmacy or GP surgery

You can find information about the individual chemo drugs or regimes on the Macmillan website here

See if there is a Look Good, Feel Better workshop near you - they are especially useful for advice on disguising missing eyebrows and eyelashes

Ellie's Friends
Something to look forward to
Cancer Research UK
CRUK science blog - this is interesting and very useful for getting the facts behind any big cancer headlines
Breast cancer care
Shine cancer support (for people in their 20s, 30s or 40s with cancer)
NHS What do cancer stages and grades mean?
Macmillan staging and grading (this is in the breast cancer section but applicable to many other cancers too)
CRUK stages of cancer
CRUK cancer grading
Don't forget the kids

Name I didn't realise you're part of the bowel club. I took the poxy oxy as addle calls it on the heat of the summer and the cold thing sucks - but it does wear off I promise. It tends to last 5-7 days per cycle. How many are you having?

I'm shocked how many people are affected by bowel cancer whether primary or secondary. I wish they did something to catch it earlier as we all seem to have it for a while before we know it's there.

I had 6 rounds of Oxy with other joyous stuff Sept-Dec last year, I had Cetuxamab (sp?) which I think I found the worst so I didn’t notice the Oxy symptoms so much. Now that’s my main drug plus Capcetimine tablets so the Oxy symptoms are front and centre! No hair loss this time which is weird as loads of thinning last time. I’m on round 3 of 6, 3 weeks apart. Attempted without a picc line this time but oh my god the pain. My veins haven’t forgiven me yet.

PoxyOxy I love! Tempted to change my username!

I'm shocked how many people are affected by bowel cancer

Yep! I had a massive struggle getting diagnosed because I was 33 (34 now) at the time and GP automatically thought stress and IBS. Got fobbed off a lot until a lovely locum did an internal exam, found the primary in about 10 seconds and the rest is history. I don’t like to think how long it was there and whether it could maybe have been found before it was stage IV.

I mean I just described someone as lovely for having popped their finger in my bum. Cancer definitely makes you come out with some weird stuff!

I also got fobbed off 5 times by various people including emergency out of hours doctors. Nobody put their finger up my bum but I wish they did! Mine was only diagnosed when I was taken to A&E with "gallstones" and as you say the rest is history.
I'm surprised you didn't have these drugs last time. Most of us seem to have what you're having now as their first treatment. The pills are not bad at all in my opinion, but the poxy oxy is a killer. At least you're sort of half way through this time around.

Gallstones! Sure yes sort of...

Sorry I was rambling. I did have that combo but I found the Cetuxamab so horrible that I didn’t notice the side effects of the other two. Also have the capcetimine (sorry I really need to work on spelling these things) as a 72 hour infusion rather than by tablets so maybe that’s the difference.

Yes, over half way through this block. Plodding through!

Incurable breast cancer with liver, bone, lymph node mets. Query over lungs because no tumours seen but I have a pleural effusion. I’ve just had a good scan with lots of shrinkage in liver and lymph nodes and stable bones. No NED but chemo has helped, and hoping for a period of stability because at one point every time I went to the hospital they told me something new and frightening. I’m shattered though, can barely walk 100m because of heavy legs and breathlessness. Also crap at following fast moving threads.

mysillydog hellooo!

hoping for a period of stability because at one point every time I went to the hospital they told me something new and frightening

Totally get this. It seemed like worse news every time I went in at the beginning. Think I’m headed for another phase of that but I tell myself it being all ups and downs is normal. Sounds like really good scan results.

Thank you for your messages.

I’m so sorry to read there’s a few of you that are incurable too.

Port fitted now waiting for x-ray.

I have Pseudomyxoma Peritonei (PMP). Or in less fancy words, appendix cancer.

I have Crohns so when the appendix burst back online January I assumed the pain was a flare up and it would settle. Sadly, by the time I went to my GP it had spread all across my abdomen.

I had an operation in May to remove my bowel (Have stoma bag), gallbladder, spleen, part of colon and intestines, bits of bowel, cervix, womb, ovaries, Fallopian tubes, part of vagina, lesser and greater omentum and then both my liver and diaphragm were scraped and cauterised.

I had HIPEC (Hot chemotherapy solution) poured in and we really hoped that was it. A course of chemo once all my wounds had healed “Just in case” and that would be that.

However, CT scans now show that it’s back in my abdomen and on my liver again. So trying Oxyplatin and Capcetemine for six months to see if it can be stalled or stopped from spreading further.

Sorry that was a bit long and rambly- will blame earlier sedation.

I do have lots of questions re the side effects. Well more if anyone has any tips to cope with them really! Painful pins and needles for example? Have bought a heat pad to wrap hands in and pop on neck on occasion but you may have other tactics. And, what the buggery bollocks do you eat when you can’t face food but you have to have something so you can take the tablets?

Sorry - Not to remove all of bowel! Had rectum removed!

I'd forgotten quite how many of us "lifers" there were! Bloody cancer.

I'm on cycle 39 of FOLFIRI and cetuximab. Previously (about five years ago now) had eight cycles of oxaliplatin and capecitabine, when I was stage 3.

I've been very lucky as it didn't take too long to get a diagnosis originally even though I was only 21 so could've been easily dismissed.

Aimlessly that's a big op! You poor thing. I've got a stoma too. Ileostomy as I've had all of my rectum and colon out. And purple has very recently had a colostomy. I'm sorry the HIPEC wasn't as successful as hoped.

Mysillydog ouch to the pleural effusion. I'm glad you've had some better news from this scan and hopefully you'll get some stability now. It's all so relentlesss

purple I hope you've been able to catch up on sleep today

I'm home from chemo. I mostly slept whilst there.

Waving to everyone

I used to have little handwarmers to keep in my coat pocket etc. They helped a bit.

Oh and at the moment my "can't face eating" snack of choice is a shortbread finger biscuit. I can usually manage half of one if needed for tablets. I'll probably go off them completely soon.

Hello Aimlessly. Blimey, that's a BIG op you went through. I had a stoma too ( the initial bowel op resulted in a leak so had to be repaired and a stoma put in to allow second wound to heal. Like Leslie it was an ileostomy but I was able to get it reversed, once liver resection for my liver mets was out of the way.

I have (touch wood) a happier story to tell - not formally in remission, but not had to have treatment for almost 7 years now. Colonoscopy in a couple of weeks and am due to ring for recent blood test results, but oddly I am scared about doing so this time: hope that is not my body telling me something. Tell me to take a deep breath and get on that phone first thing tomorrow....

Sorry I am rambling. Just wanted to say that I do a lot of voluntary work now at the Marsden, at different levels, and so am at the Marsden both sites several times a week. Happy to meet up if timings coincide with anyone there without friends and family support.

with regards to the poxy oxy, it helped when the chemo nurses wrapped my arm in a heat blanket during administration (before I got a port) and I used to wear gloves and a muffler round my mouth on leaving the chemo unit. And obviously went nowhere near a fridge or the cold tap . But my tingling, pins and needles went away within a few weeks of stopping so I obviously was lucky.

Cetuximab I HATED - sooooooo spotty.

We are here to hold your hand tomorrow if you need us tantalisingduck it's worth phoning before the weekend so you aren't torturing yourself with those thoughts for two extra days

Oh my God the spots I cried for weeks.

7 years without needing treatment is so amazing. That is a very happy story indeed.

I'm on cycle 39 of FOLFIRI and cetuximab

This might be a question you can’t answer or don’t want to, but I had both of those to start with, with the poxyoxy etc, 6 rounds and I have been told I can’t have any more Cetuxamab now as it’s just a one time thing. Does it vary between trusts do you know?

Thankfully the spots got better. The oncologist actually cheered when I got them as they're so strongly associated with it working. So then I felt churlish whinging about them now I just get a few every cycle. The curly eyelashes however have remained

The funding for cetuximab is very limiting. I don't think the number of cycles is restricted, but if you have a break of longer than about six weeks they lose the funding for it and it's almost impossible to get it again. So that's probably why. I don't know what the justification is for it.

Did you have FOLFOXIRI and cetuximab? That's hardcore.

I had such extreme spots that other oncologists and some nurses came into admire them and tell me what a good thing they were! But it didn’t make me feel any better when I was being stared at in Co-Op!

That makes sense about the break. I’d have had over a year between stopping it and starting it again so that’s probably a big funding problem.

Did you have FOLFOXIRI and cetuximab? That's hardcore

Oh probably not then I must be misremembering because I am most certainly not hardcore! But they did say it was the most aggressive and effective combo, and I did have a really really great response to it, so primary and liver are both looking good now. Liver resection helped too obviously. Just a shame about the newcomers! Ugh. Stupid cancer.

Hi aimless - I struggled to find things I could eat as well after chemo sessions but often ended up eating salty things like cheese and biscuits etc rather than sweet or particularly filling things but it may be trial and error a bit!

Someone else mentioned the arm heat pads - I used those for my poxyoxy infusions and my veins managed a little better with the heat. Still have some ruined, hard veins on the left though. It makes your arm freezing cold! And I had an awful vomiting reaction on the second cycle but was fine for the last 2 cycles. It makes me feel sick even thinking about it tbh...

tantalising congrats on the 7 years! That is really good. I’m sure the anxiety is just like scanxiety or whatever they call it?! I feel nervous about having bloods too. Even if the blood count is slightly lower than before I will freak out worrying why! It was very low when I pitched up at A&E so will no doubt take me back to that day... bloody cancer...

addle that’s really interesting, my veins feel so hard and horrible after my two Oxy infusions. Much happier having a line now. I thought it must be me imagining it so it’s nice to hear I might not be!

Picture the scene. I'm having my chemo, the chemo unit is full. The nurse goes to the patient opposite me and I start having a coughing fit.

Nurse: Are you ok?

Does anyone want to guess what I said?

Me:yeah I'm just dying over here 😳

In the middle of a fucking chemo unit

Thankfully the other patients laughed

Nurse: can you die quietly? (Whilst laughing)

oops pandora! How was chemo apart from that?

namechange it probably was that combo. I just hated oxaliplatin so much the idea of having it all seems a lot. But lots of people seem to prefer it to the irinotecan so I guess it just depends how you react. It's good you responded so well to it. Hopefully they'll subdue these latest little fuckers.

My veins still haven't full recovered from the oxaliplatin after five years so I wish I'd had a PICC line now. They didn't seem to be so common back then. I don't remember anyone else at the chemo unit having one either.