Roll up, roll up and join the lacies for CANCER SUPPORT THREAD 59 - anyone with cancer is welcome (and those awaiting test results)

[WhatWouldLeslieKnopeDo]

Hello everyone,

This is the cancer support thread, which has been running for many years under different names. Most posters have breast cancer, but various other cancers are represented too! Whatever cancer you have, feel free to join us. We also welcome those who are awaiting test results to find out whether or not they have cancer. We know how difficult the waiting can be and we are happy to hold your hand. Hopefully you won't need to join us permanently

Feel free to ask any questions. There will usually be someone who knows the answer or will know where you can find it.

Whatever you do, stay away from Google!

You can post anything you like here. We don't mind swearing or complaining or angry ranting. We aren't brave or inspirational and you don't need to be either. Nobody signed up for this, but we support each other as best we can

The previous thread is here

Good morning all.
mrs I don't think I could be any more patient!
I'm glad your results are not sinister..though when cancer is the bar, nothing else seems sinister. I had a DEXA scan which checks for osteoporosis as well..is it the same kind of scan? And what are horse pills?!! Sounds unpalatable
Leslie, I second that suggestion re needing something stronger..too bad I'm not a drinker though!
Wishing everyone as good a day as possible.

Hello everyone
I haven't posted in ages but have had a quick look at the thread and just also wanted to add in my best wishes to Chewing whom I did have some contact with. I am not good at remembering all user names when I am replying but I appreciate that this is a great thread with lots of support and help to anyone for cancer treatment or awaiting results

I have just finished radiotherapy too and am quite burnt but hopefully will settle soon. I also did use the cold cap throughout my neoadjuvant chemo which was 3 FEC and 3 Docetaxol . I persevered although I lost 90% of my very thick long hair as nurses keep saying I would be glad as would start to come back on the Docetaxol part which was true so although painful and cold I do have plenty of very short hair now three months after finishing. I am glad now I had the chemo first as it shrank the tumour to nothing. So I have finished treatment for now as had mastectomy with tissue expander in then rads and now have to wait for a while to see about next stage of reconstruction once skin has settled.

I also have a sister in the UK with BC sadly now it has spread to her brain and she has just had whole brain radiotherapy , its such a horrible disease , I can only feel glad that I was able to have the whole works as she has not been able too sadly . I don't know what to feel really myself as its so unpredictable , I just am trying to stay in the moment and although relieved to be finished treatment also anxious about what may come next.

Hi all... I an really hoping someone can help this thread was recommended to me by another poster.

I am pregnant with my second child and my dh has been having various tests. He has had rectal bleeding for 5 years off and on, and has been told by various docs that this is due to fissures and haemmorhoids.
This summer he began losing a lot of blood and went to the docs asking them to look into it/ do more as it was getting out of hand. He was referred for blood tests and his iron/ haemoglobin was 6. He was immediately booked in for a transfusion and two iron iv's. He is on a course of 640 mg of iron per day. He has had a rigid sigmoidoscopy, an endoscopy and a colonoscopy.

So far they have found he had a hiatal hernia and haemorroids. They have taken a biopsy for celiacs disease and the results won't be back for another weeks (5 weeks in total). If that is clear they will do a small capsule endoscopy.

He is now bleeding every day rather than intermittently and has lost nearly a stone.

I feel like it must be something more serious but no one seems to care or listen. My dh keeps saying if it was cancer they would have found something on his colonoscopy and he would be in pain.

My husband is 36 and the beat thing that ever happened to me. I can't stop worrying that it is cancer and that no one else thinks it is so he will just get more and more ill until it is too late

Please help me. I am a wreck. I can't eat or sleep well and have gained just 4lbs in my pregnancy (currently 27 weeks).

Good morning everyone

mrsrhod sorry to hear about the osteopenia. How frustrating to have different opinions. It’s not just the bleeds though. It’s all the stress, the hysteroscopy, waiting for results, chasing up etc. Personally I think I’d be tempted to have the op so it’s all over and done with. But of course it is easy to say that when I’m not actually in the situation!

royal maybe some chocolate? I don’t drink either

aussie I hope your burns heal quickly. I’m glad the chemo was so effective, and it must be really reassuring to actually know it worked. I hope that your sister’s radiotherapy has been beneficial it is a cruel disease indeed. It must be very difficult for you to be going through it alongside her and yet on such a different path.

grace hi. I’m sorry your husband is having these problems. I hope they can find some answers soon. I think your husband is right. It is unlikely that he could have a GI cancer significant enough to cause those symptoms that wouldn’t be found on an endoscopy or colonoscopy. Has he asked his team about the possibility of cancer? To be honest I’d expect that to be one of the first things they ruled out

Aussie I had bad burns from the rads and the only thing that worked for me was extra virgin coconut oil. It was like magic!

Hi royal yes it was a dexa scan. The horse pills are enormous tablets of calcium and vitamin D which you have to chew, very chalky with an unpleasant flavour. Not at all significant compared to all the other nasty treatments but something I'll probably have to delete forever.

leslie everyone but the surgeons is very wary of having major surgery in my case. Most women who have a hysterectomy will have had years of terrible bleeding and their lives will be massively improved afterwards. I don't have that, I've had 4 episodes which have had to be investigated because Tamoxifen can cause endometrial cancer. Although not pleasant having scans and a hysteroscopy is far less invasive and dangerous. I'm concerned about things going wrong in surgery, surrounding body parts being damaged, it's all a bit delicate down there. I'm not happy at the thought of being out of action for weeks just as I'm think I'm beginning to feel that the horrible initial effects of the anastrazole are beginning to wear off. Conflicting advice isn't helping. It would probably help to speak to someone who's had the surgery recently.

you have to chew the horse tablets? ive just been swallowing them - maybe i should put my glasses on to read the instructions!

have you been offered the infusion every 6 mths? in cardiff now they are doing this regardless of bone scan results if you are on letrozole type medication

Hi lookingforbaubles what infusions are you referring to? My onc mentioned some sort of injections ..forgot the name!

for those having to chew the horse tablets mine are Accrete D3 film coated tablets and should be swallowed whole

i cant remember the name, its the one where it stops the leaching of calcium from the bones for 4mths - and you cant have any dental treatment or surgery for those 4mths, you then get 2 mths off before another round starts

i havent started mine yet - ive only got one kidney which complicates things

Gosh it's been busy here, sorry that there seems to be so many challenges at the moment. Hugs all round.
I have the 6 monthly infusions, in fact the first one was with my last chemo. Mine is zoledronic acid (also known as zometa). It's to protect against bone mets and osteoporosis I think. Have to be careful with my teeth and on the day it literally knocks me out for several hours, I feel droopy for a day or so then fine.
I cold capped for my chemo, I had 4 cycles of docetaxol and cyclophosphamide. I did lose maybe 30/35% of my hair and it's no fun, but it was worth it for me. I didn't have to wear a wig, though you look odd, obviously you have to be so careful with what's left - no styling, dyeing, and tepid baby washing. I lost all my other hair so eyebrows and eyelashes vanished. Growing back, it gives you a head start (literally!) Now I look fluffy, slightly unkempt, (new hair is mainly vertical) but normal. It's taken a full year,
Thinking of everyone having a tough time and facing choices.

I am feeling sorry for myself and weepy. A very good friend has been to visit me tonight and although I was feeling strong, she has made me realise what I am facing.
I am doing everything wrong in talking about my feelings and now listening to music which is making me feel maudlin.
Sorry for the pity party. I will be ok tomorrow.

Sorry I’m about to nod off but Wombat I hope you get some sleep and feel better in the morning

Thank you Leslie
Suddenly I am in floods of tears. It has all become too much

Wombat I hope you're feeling better this morning. We all have times when it's just too much and actually sometimes we do need to just let go and have a wallow.

MrsRhod I had a hysterectomy/debulking in July to get rid of the cancer. I had no problems or pain beforehand so the 'improvement' is just knowing there's less for any cancer to get a hold on. The first couple of weeks were tough but other than that it's been OK - frustrating not being able to drive but not a massive problem for me. Happy to answer any other questions if you have them.

Thank you leslie. I feel like a fraud coming on here with possible problems when others are facing such awful challenges.

My dh has gone into all of his appts on his own, so I don't know exactly what has been discussed. He did say that immediately after the colonoscopy they informed him they didn't find any polyps the only notable thing was internal haemorrhoids. This was massively reassuring at the time but as he continues to lose weight each week i am increasingly worried.

Does anyone have experience of weight loss on iron tablets ? I am truly sorry if I come across badly to the rest of you posting in here... I suffer with anxiety, I am pregnant and well, just having a bad time of it I guess.

wombat please don't apologise...

I hope you feel better today. Sometimes it can be cathartic to get the worries and upset out- listening to music or watching a sad film are a way of just letting it flow out.

Hi wombat you are not alone though you may feel lonely
Being pregnant doesn't help for sure with all those hormones. I'm sure if it were cancer, it would've showed up clearly on ant if your DH's tests/scans. But no he shouldn't have to deal with so much bleeding etc. Best thing is to keep close contact with his doctors. Their duty is to ease any pain or discomfort he's suffering.
Please don't despair and we're all here for you

Oh dear I've gone and muddled wombat and grace.sincere apologies..my head is just so messed up

Thanks for the tip re coconut oil Royal , Its very soothing and smells nice too nice than bepanthan
Leslie you are right going through this with my sister and hers being stage 4 at the outset is hard , I don't feel I can say too much but she is very supportive to me , its hard to on our parents as theres just the two of us and they are quite elderly
I have to start on the hormone tablets next week so reading everyones experience is enlightening

grace it sounds very unlikely that it is cancer, then. Could you perhaps go to his next appointment though so you can hear/ask for yourself? I assume they’re testing for inflammatory bowel disease, which is a more likely explanation, especially given there was nothing visible on the colonoscopy. There’s a thread somewhere for people supporting their partners with life-limiting illnesses, which might be helpful

aussie do your parents live nearby? Good luck with the tablets

mrsrhod sorry I’m rather blasé about surgery nowadays I hope you have recovered from the hysteroscopy

I hope everyone is having a reasonable weekend :)

Evening all.
Just checking in after week 1 of radio. Been ok so far. Worrying about the fatigue side of things... my baby turned 11 months today and is horribly teething so sleep isn't happening too much here .

Hope everyone is having an ok weekend. Sorry not to address people directly, my brain's too tired!

How’s it going LittleGreyCat? Sorry to hear about your baby. I hope the teething improves soon!

leslie don't apologise, I realise my post was a little angsty but it really wasn't directed at you. I'm just troubled by the different advice I'm receiving and wish someone could just say definitely what I need to do.

wombat I'm so sorry you've reached crisis point but that's what's so great about being able to come here, just keep talking and shouting. We all understand.

Radiotherapy burns are nasty, different products have been recommended over the years here and different hospitals have their own rules. I used an Australian product called MooGoo which worked well for me.

twitter thank you for your comments, the thought of not getter any further cancers is quite a motivatior for me as I don't think I would feel any benefit in my general health. I am seriously considering it.

baubles my horse tablets have no name but they definitely have to be chewed or sucked. I think I'll ask the pharmacist if they come in a better form, the dr was a bit clueless.

Oh no I didn’t think it was mrsrhod, but I was genuinely sorry as I just hadn’t really even thought about any of those things! I know I go on about it but my last op has made my life a million times easier and I pushed for it despite some increased risk to my lungs, so I was projecting those feelings when actually it’s not at all like that for your situation

I hope you can get some non-chewable tablets as they sound unpleasant.

I’m going to have an early ish night. Lots of fireworks here tonight. I hope everyone sleeps well. Wombat I’m thinking of you