CANCER SUPPORT THREAD 66 for those with cancer or awaiting cancer test results. Rant, rave, laugh, cry, joke, scream - whatever gets you through the day.

[TwitterQueen1]

Welcome to the new thread, and the club that nobody wants to join. Our previous thread is here

Anyone with any type of cancer is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you have a loved one with cancer you can get support on a different thread here

For old and new posters it's very helpful if you (re)introduce yourself in your first post with a summary of your diagnosis (chemo brain is a real thing and my memory isn't what it used to be!).

Great news Emily! and thank you for tips on nightmares xx

keepcalm I received a booklet which I think broadly says massage is good but will look in more detail for you. It’s interesting you had a smear actually as I was also due one and my oncologist said before or after chemo and I didn’t get round to it before 🤷‍♀️. Good luck with new wigs - mine sounds similar to ranout’s and I’ve been happy with it.

Glad to hear leslie is on mend. Great news about cancer being stable purple. Hope you’re feeling ok noodles and hope you’re enjoying your trip gin - very jealous. Waves at everyone xx

Hello everyone. I will read everything properly but wanted to say hello before I lose my nerve. You were all so kind to me when I was having tests a few months ago. Results weren't cancer but a fibroid and something I can't remember. Got a letter saying all fine but now I have to go back in three weeks and I'm confused why.

However, what has made me post today is I have new symptoms. I googled for piece of mind only to find out my symptoms don't mean I have cancer but may mean I do. I've decided to wait five weeks then go to doctor as they always seem to say wait a bit anyway, don't they?

Oh @EmilyRosiEl that's fantastic! I couldn't be more pleased for you xxx

Thank you so much lovely Simmi and KeepCalm xxx

YearofYou, I hope you are OK! five weeks seems a long time to wait and the GP could decide whether to refer or whether everything's ok if you went sooner?

xxx

Great news Emily

I'm ok ta, very minor side effects compared to a lot of people on here at the mo. Just keeping myself dosed up for the flu type aches & pains.
Mum & I have had a takeaway curry delivered tonight which has cut through the weird furry mouth and was lush.

Have a good night everyone & hopefully purple & Leslie will be on their way home from hospital in the morning... I hope you manage a decent sleep tonight & your neighbours on the ward are not too noisy X

Ahh emily how kind are you? Good things happen to me every day, just some of them take more searching for .

So pleased for you. You’ve really been through the mill these last two weeks.

Thank you Emily.. I think I need to wait a bit.

yearofyou I wouldn't delay going to the doctors. The sooner you go, the sooner your mind can be put at rest, or if it is something, the. Sooner treatment can start. If they tell you to come back in a month if you are still having the symptoms, so be it, but if you are worried, I would go ASAP.

Thank you noodles44.. I can't face it this week but I will go next week if I've still got symptoms.

Can I join please? I'm struggling a bit with side effects from Docetaxal at the moment. I have stage 2 breast cancer, HER2+, detected by mammogram which they first told me they were "99% sure" was a benign cyst. No detectable lump, no symptoms. Further tests revealed it had spread to a lymph node.

I've had 3 rounds of EC which, apart from the last one, didn't make me sick at all and I found the side effects very predictable as they had a definite pattern.

Had my first of 4 rounds of Docetaxal/Herceptin/Perjeta last week. Was ok until Saturday when the aching limbs started. That went by Sunday evening but I've been throwing up every night since Sunday. I have no appetite and a sore mouth/throat and a bloody/sore nose. I'm frustrated as I can't see an end to it and the doctors had told me I wouldn't feel sick. I'm having surgery in Feb followed by radiotherapy.

Has anyone else felt like this on this new combination? Did it last for the whole cycle?

Thank you Noodles!!

Sorry Namechange, that was a bit of a silly thing for me to say!

I'll leave the group now but just thanks so much everyone xxx

Emily I'm so sooo pleased for you! Now bugger off and celebrate

Waves to Dulce 👋 I've been wondering how you've been getting on! Good to hear from you and so glad your scans have been good ones

Hello Symphony I don't have breast cancer but hopefully someone will be along shortly with some advice. Your chemo unit will prescribe antisickness tablets and a special mouthwash to help with the sore mouth

I feel like I'm going to be stuck in hospital forever my temperature hasn't dropped below 38.3 since I've been here so I've had blood cultures done to hopefully find out what's wrong. Sick of having such a sweaty head

Hi Symphony I’m in a very similar situation to you but you’re ahead of me on the treatment cycle. I’m currently half way through the first part - I’m having AC which I assume is similar to EC. I’ll then move onto exactly the same combination although I’m having Taxane I think rather than Docetaxel. Are you having this combination weekly - I will be for 12 weeks and have also been told that I shouldn’t get sick. I have been given a mouth wash for sore mouth but have so far not needed it on AC.

I’m in Australia and Perjeta isn’t currently funded for non metastatic bc so I’m self funding it. Out of interest is it available on NHS? Also what kind of surgery are you having? I’m having mastectomy with immediate reconstruction so they’re going to do radiotherapy before surgery for me so that the radiotherapy doesn’t damage the new breast. Just wondering how treatment protocol is different in Uk.

Sorry about your side effects - my nurses and oncologist here have been really good at suggesting stuff but like you I’ve been more or less ok on this first part. Hope you feel better soon 💐

Sorry to hear about your temperature purple - hope it comes down very quickly! 💐

Great news Emily so glad you are not needing to join us (meant in a nice way!).
Purple great news re scan. Hope the antibiotics kick in soon - sweaty head doesn't sound comfortable! Good news about Christmas chemo too - at least that's a bit of a silver lining.
Thanks for the update on Leslie, TQ. Thinking of her.
Hi Dulce. Nice to hear from you! I have to say I've been doing the same but the scanxiety has me in it's grip at the moment.

Hi All

Long day at hospital today. Got there about 8.30 to get parking space at hospital. Treatment got going about 10.00 am and finished about 14.30. However then had to wait for unexpected appointment with lead oncologist. She is absolutely lovely because when you see her she lets you have as much time as you want for questions etc but the result is she always runs massively late! Saw her about 4 pm and we were home for just after 5 (fortunately only 10 mins drive from hospital).

Managed a bit of sleep but still on steroids today and tomorrow so disrupted sleep more than usual.

Lots of posts so will catch up properly as soon as I can.

Symphony. I think I have had similar experience to you. I am pretty sure I am on same combo as you. Will check tomorrow and let you know my experience. Just had second round of the docetaxel combo. Side effects have definitely been more er varied with the docetaxel than the EC which as you say became very predictable.

symphony I have had a similar experience to you, although I was constantly nauseous on EC which I had fortnightly for 3 lots.
My 1st docetaxel I had a lot of nausea (was still on very strong anti nausea meds as they thought I had been so nauseous before, I also had anticipatory nausea) also really bad flu symptoms, nosebleeds, sore mouth (cracked at the corners, sore inside & tongue felt too big for my mouth) horrendous dire rear (after constipation) and felt hideous.
Just to reassure you, I saw my consultant and came away with a bumper bag of meds for the next round. The side effects have been minimal ever since and have not needed most of the meds.
I wasn't sure if it was still that I was only a fortnight since my last EC as my docetaxel went to 3 weekly (for 4 lots) but the following 3 docetaxels have been nowhere near as bad. I did my last one on Friday and have just flu symptoms and a sore throat/glands. Not great, but nowhere near as bad as the first. Other people have said that the first chemo can be the worst side effect wise, I hope this applies to you too and you are relatively symptom free for the remaining ones...

I have been keeping my fluid levels up & drinking loads, also having dirolyte to replace minerals etc if sick/dire rear.
Not that you would know it from me being awake now as have been sleeping randomly this cycle more than before, but I have been tired & so slept in the day too.
My side effects seem to be worse days 4, 5 & 6 after chemo. Now I am 3 weekly I get over a week of feeling reasonable (although with the first docetaxel my symptoms lasted longer)
I hope they ease up soon for you.
I had a bad nosebleed that took 40mins to stop on the first lot & was advised to use a tampon if I needed to stem the flow again, as my blood isn't clotting in the same was as usual too.

purple the sweaty head is no fun (I keep getting that but put it down to menopause symptoms) esp no fun on a hospital plastic pillow! I hope it stops soon. I met a lady in the chemo unit last week who sayes she good a cool gel pillow insert from Amazon which really helped with her sweaty head. It is on my to do list to order one!

Sounds like a long day mrstraveller but good that you see your lead oncologist regularly. Mine is fab, but have only actually seen her once!
She has a brilliant team though, so luckily I have been pleased with my care from them too.

*says she got (sorry my typing is awful)

Hello all, I was on this thread back in August. After sudden onset of back pain in May I was diagnosed with stage 4 lymphoma in my bones, mostly in the upper pelvic area and spine. My back had become very unstable and I had to be on bed rest.

Well I finished my last round of 6 chemo treatments about 10 days ago. I had a PET scan before starting treatment which showed the extent of the cancer. Then after 3 chemo treatments (R-CHOP which I had every 3 weeks) I had another PET scan. The dr was delighted with the result as the lymphoma was definitely on the retreat. So now I am waiting for a couple of months until all the chemo is totally out of my system to have another PET scan and find out if I am cancer free. That will be at the end of December.

I have back pain attributed to bone damage from the lymphoma, so if I am (please God) cancer free I move to the next stage of my treatment which is repairing and rebuilding my bones. I am still on bed rest most of the day.

Thank you for this thread.

Gah. I am still awake but really, really tired.

Symphony Just checked my stuff and I am indeed on the second round of same combo as you.

My chemo nurse was clear at the start that we shouldn't have to put up with sickness these days as there she said there is always other stuff they can try so I would definitely contact them about that. I have had nausea both on EC and Docetaxel but never actually sick so far (touch wood).

After first round on Docetaxel I did start with some spotting from the nose and chemo hotline said because you lose all your nose hairs any minor trauma from blowing your nose can cause some bleeding. However, I then did have a full on nose bleed but only once. I did mention this to the oncologist today and she wasn't concerned. If it's happening frequently though, as in full on bleeding, it is probably worth mentioning?

I've had dire rear throughout the cycle. Had a bit of this with EC but it always went back to normal before next cycle. I've now been given something which I think is akin to Immodium and been told I will just have to manage that line between dire rear and constipation. I will probably leave it over the weekend as like Noodles my worst days seem to be 3,4 and 5. I have bad joint pain and skin sensitivity (had this on EC). There seems to be some debate about whether the chemo or the jabs to help stimulate the white cell count are the cause. Anyway I now have stronger prescription co-codamol to help cope over these 3 days which will cause constipation so I will probably hold off on the immodium type stuff until I stop with the co-codamol.

Last but not least the absolute worst side effect I have had with Docetaxel combo is thrush. This has morphed into what I think is a lovely thrush/bacterial vaginosis combo (sorry if tmi). I did see the GP once with this and she did give me some Canestan cream with Hydrocortisone but you are only supposed to use it sparingly for 7 days and there is definitely something going on internally. I have a pre-booked phone call with the GP today and going to insist on seeing someone urgently as it is very sore and uncomfortable now and the worst thing I am dealing with a the moment! The oncologist told me it's fine to use pessaries for thrush and also any antibiotic they need to give me if it something bacterial so feel like I can press the GP now I have that knowledge from the Oncologist.

Noodles - only second time I have seen the lead person! She set out the treatment course at the beginning and then in-between times I think I have seen the junior doctor. I wasn't expecting to see her yesterday so quite a nice surprise as she is so lovely. She actually has a lovely, ever so slightly "ditzy" manner (which I think puts you at ease because there is humour there and you can have a bit of a laugh with her) but I absolutely trust her and she is always so reassuring and listens to all concerns (hence her clinic over-runs!)

Interestingly on the mastectomy/lumpectomy issue she did seem to look slightly quizzical when I said that the surgical consultant had said slightly higher chance of recurrence with lumpectomy so possibly difference of opinion there!

However, in my case she said she thinks the mastectomy is the better option for me so I think I will probably go with her opinion.

My approach to this whole cancer thing has to just go with what I am told as I really trust my team. I really don't want to know too much detail. To this day I don't know what stage I am. I could now probably make a reasonably educated guess but I haven't been told and haven't asked. I think part of my reasoning about this is I want to avoid googling. My previous job involved lots of analysis and I am a very analytical person. I know if I had the info I would definitely google and this would affect my mental health which is a whole other issue!

Sorry this has ended up a mega long post - too much time on my hand in the middle of the night!

xxx

Thanks everyone. I crashed out after the vomiting but did my usual 3am wake up for a wee then can't get back to sleep. Today is Day 8 so
I'm hoping that the side effects will abate soon. There is literally nothing I can stomach now apart from water, and I have to sip that as my throat is so sore.

Simmi1 I'm on 3-weekly rounds at Mount Vernon. I am not sure if Perjeta is widely available here yet as my consultant described it as a new drug. I met someone at hospital who was a year ahead of me in treatment and just having her last Herceptin, she wasn't given it. I'm having a lumpectomy and node clearance in the armpit. My breast tumour is 7mm but the one in the armpit is much larger. They were initially going to operate first but the radiologist on the team insisted on chemo first as he didn't like the look of the lymph node.

I had been very upbeat and positive but these past few days have been awful. I keep telling myself that it could be so much worse and that the last lot is 2nd Jan, so it's not forever. I may call the unit as the domeperidone just isn't working. I have diahorrea too but that seems to be under control.

I've got mouthwash too, but I'm sick every time I use it.

mrstraveller we sound to be very similar in our treatments. I too really really trust my team looking after me, so feel confident in what they are doing. I was told at the outset to avoid googling due to out of date information, which would have potentially been a source of stress and lets face it, just doing what the team advise to do is enough to be going on with!
I also recommend the breast cancer book that ranout mentioned too. It is very informative and fills in any gaps. The doctors who wrote it have also had breast cancer, do it is written from a GP/breast surgeon and beast cancer patient perspective.

I hope you get a GP appt 2mo and get the thrush sorted. What a pain. It must be a fairly common side effect as the consultant checked my throat for it (after me saying I had had a sore throat last cycle) but I was clear thankfully. EC for me was overwhelming nausea, docetaxel is loads of little niggly things which individually don't sound too bad, but combined just make you feel lousy.

I hope you get some sleep soon, not sure what is going on with my sleep this cycle as I stopped steroids on Saturday! I think I am napping in the day which is throwing my sleep out at night a bit. Probably going on the iPad isn't helping either!

Give them a call in the morning symphony there are loads of anti sickness options. I think I must have had every anti nausea going on my EC. Domperidone didn't have much of an effect on me either. Eprepitant (?sp) worked better, but is only 3 days of tablets & cyclizine was an improvement too for me.
I have also had Lopermide which helps with both dire rear and sickness, but makes you drowsy, they also give me codeine and paracetamol separately for the flu feelings as codeine can slow your system down.

I have just finished my last chemo, my op for lumpectomy and lymph node clearance from my armpit is in Dec. I felt the same as you after my 1st docetaxel, but it has gone by quite quickly and luckily the side effects really calmed down after the first lot. Hopefully you will be the same and these ones pass quickly too. I hope you feel a bit better tomorrow and are able to manage more than water. The dirolyte sachets are (revolting) good for replenishing all your minerals etc and may make you feel better quicker if you can have some of those too.