Cancer Support Thread #79 Newbies Welcome

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

@quinin I’ve had the same problem after three rounds of Docetaxel (chemo) - was wondering if it could have been the Herceptin or Perjeta, but hopefully not, now that I’m done with the Docetaxel. Time will tell! Over the counter pills helped me.

@FizzyOrange and @Acinonyx2, hope surgery has gone well and look forward to hearing from you when you’re back!

Thanks so much for starting a new thread @MrsPnut. Here's a link to the last one for anyone who wants to look.
Hope @Acinonyx2 and @Vinorosso74 are both doing well after surgery, and @FizzyOrange of course.
@TopOfTheCliff glad you are home!
@Thereisonlyoneofme that must have been a bit of a shock about the tumours, especially the one on your appendix - did that come out as well? Have you been got a follow-up appointment? I'll be interested to know if you do go on to a PARP inhibitor, I should be starting olaparib next week if my scan is clear. I read a very encouraging case history on the Worldwide Cancer Research website about it which has made me mentally revise my life expectancy!
@JeanLannes I was on paclitaxel and carboplatin in 2019. Also had a kidney function test, the horror of 36 hours without caffeine! (my test was over 2 days). Hope all goes well for you, and I'm very pleased to hear that you have no sign of metastatic disease.
@AlbertCampion congrats on completing last chemo, and on hair growth! I hope you get through the side effects reasonably quickly.
@balkanscot sorry you had that difficult encounter with your neighbour. I remember when I was bald in 2019 I always hesitated a minute and took a deep breath before taking a hat off in a public place; I really didn't mind not having hair, or who knew I had cancer, but was aware it would attract looks and speculation.
@KentishMama that's really good that you can do the monthly injections yourself; as you say, freedom to travel, and I hope you do!
@MrsPnut have you had that long-awaited shower yet?
@weebarra good luck for Tuesday, very much hope it will be good news for you.

Just to remind people, if you check in here other posters will be able to tag you.

Introducing myself for any newbies: I was diagnosed with ovarian cancer in May 2019; the tumour was a carcinosarcoma, grade 3 as "rare and aggressive" but only stage 2 thanks to early investigations. Had usual hysterectomy with everything else around removed, then chemo. CT scan in July last year showed a lung nodule which turned out to be a metastasis, it was removed in September and I had more chemo which finished, thank god, nearly four weeks ago. So I'm now "stage 4 resected" but have high hopes of staying OK for quite some time if my next scan is clear, as I will then go on to a PARP inhibitor which has had very good results for some patients.
I am 66 and live with my (female) DP in London.

Morning, @Bloodybridget I have indeed had my first shower this morning and it feels wonderful. I had a bit of a poor night's sleep though as I’m a little sore with no dressings and the surgical bra. I’m sure it will settle quickly enough but irritating all the same.

Hi all. Does anyone have any constipation tips? Prunes and Sennakot not working!

I had an appointment with consultant yesterday. They said the mammogram showed calcification on the other breast so I need an MRI. Having that on the 4th May. Results on the 13th May. Earliest surgery would be is the 25th May. I expected everything to move much quicker than this. I was diagnosed with breast cancer on the 15th April. Is the waiting normal?

Hope surgery has gone well for @FizzyOrange and @Acinonyx2.

Thanks for the new thread. Just to reintroduce myself, I'm 44 with stage 3 oesophageal junction cancer diagnosis in Feb 2021. I've two DC's aged 4 & 9. I still find it hard to believe this is happening time.

Backformore it's my 3rd Docetaxel too so perhaps it's that that although they think it the 5FU but I'm on so many drug these days who knows.

Top Loperamide did nothing to stem the flow even at the max dose. I have not taken it before so no idea if it would usually be effective.

BadEyeBri that interesting about the supplement. I've wanted to take aloe and a couple of other things to support my digestive tract but it's been a flat no from the oncology team.

Lunificent. Docusate has always sorted me out on the constipation front and you can buy it over the counter.

Chicken I can't comment on the time frame as I went privately in the end as the NHS misdiagnosed me twice, but I do know the waiting seemed like forever.

BloodyBridget that's amazing they are coming up with new treatments all the time and the dedication of some people is truly heartwarming

Hope those recovering from surgery are feeling ok today. Sending lots of positive vibes to everyone else. Looks like another sunny day here hope people manage to enjoy it.

@Lunificent can you call your GP and ask for some laxido? I used it after morphine and codeine intake post surgery. I only needed two sachets for two days and I was back to normal. I think you can buy it over the counter but when you have free prescriptions and having cancer is expensive anyway, you may as well get it from the GP.

@ChickandLamb I was diagnosed with my vaginal cancer on 6th November but didn't start treatment properly until 16th December. It was scans and biopsies and having two cancers that held everything up.
This time I saw the surgeon privately on 9th March and had surgery on 7th April but it was only so quick because I had already had all the ultrasounds and scans before. I also got lucky with the dates, it should have been nearer the end of April.

@ChickandLamb I was diagnosed initially on 9th Feb. My treatment didn't start until 29th March. In between these 2 dates I had a consultant meeting, a MRI, a CT and a PET/CT. The scans are needed to plan your treatment. It's horrible and frustrating being in the "holding pattern" before treatment starts. Try to focus on the fact that your clinical team are getting as much information about your cancer so they can treat it as effectively as possible.

Just to re-intro on this thread, I'm 40 diagnosed with stage 2 cervical and endometrial cancer. Treatment is 28 sessions external radiotherapy, 5 cisplatin chemotherapy and 3 sessions of internal radiotherapy. So far my treatment hasn't been too awful I'm about 75% way there.

@MrsPnut woo hoo for the shower, I can only imagine how fabulous that felt

@Bloodybridget I have got a telephone consult next Friday, only because I phoned up and asked! I think I will be on Niraparib because I dont have the BRCA gene. Yes they took my appendix out as well.

Hi - for the newbies I’m 51 and diagnosed with inflammatory breast cancer in April 9th.

@ChickandLamb - I used our health insurance so have moved quickly. I would have used the NHS as the local team that I’ve seen before are excellent but the timings coincided with DH being away for an extended time and I wanted him around.

@MrsPnut - glad you were able to have a shower and hope you’re not too sore.

@quinin - I’m not sure I’ve said hello previously so hi. I am still in a state of disbelief as I feel and look well.

@Bloodybridget - that all sounds very promising.

Sat waiting for my kidney test. Luckily I think mine is about 4 hours and have already had a large coffee. Port fitted Monday and then first chemo on Tuesday. DH expected home late Monday by the skin of his teeth. I’m just hoping his travel arrangements work.

Hope those that have had surgery are recovering well. Beautiful sunshine where I live which really helps to lift the mood.

Any top chemo tips?

@JeanLannes my tips would be to take plenty of stuff with you to keep you occupied and don't be afraid to make your little area your own - put your feet up, adjust the chair, whatever it takes to keep you warm and comfortable. I'd also avoid eating or drinking anything you really love while you're having it - I got offered a cup of tea while I was hooked up and accepted. Now, even the thought of tea makes me extremely nauseous - I think it is just a very powerful association. I also found chewy mints helped keep my mouth feel "clean".

Good luck with it!

Does anyone have any tips for dry mouth? I am really suffering with it this cycle and no matter how much I drink my mouth and throat are just constantly parched. I keep waking up in the night feeling like I am choking - it's like my throat is sticking together.

For the thread update: I am 45, married with one DS, diagnosed with breast cancer with sentinel node involvement in September. Two ops, six rounds of EC chemo which finished last week. Radiotherapy and hormone therapy next.

Hi AlbertCampion
I’m on my 3rd month of Letrozole and getting the same at night too. I’ve just started using Xylimelts to help. You stick one or two to your gums and it stimulates your saliva production for upto 8 hours. I’m certainly finding they help. May be worth try as long as you have no issues with Xylitol.

To introduce myself- 49, diagnosed with grade 3 mucinous carcinoma of the breast in mid-June 2021. 2 ops ( to get clear margins), sentinel node biopsy (no involvement!). 15 sessions of radiotherapy in October. On monthly Goserelin/Zoladex implants and Letrozole for 5 years. Also having bisphosphonate infusions every 6 months for 3 years to protect bone density and reduce chance of bony mets

Apparently, all went well with my surgery yesterday. I was back home at 6pm. No feeling sick after surgery either-the anaesthetist told me he had good drugs to prevent it. I was really impressed with the whole team yesterday.
Feeling a bit sore today so keeping on top of my prescribed painkillers and lactulose. I did feel a big funny earlier but ok now. The drain is a bit awkward but manageable. The buzzing as it worked was a tad annoying overnight!
I have two trips to the hospital next week then will find out what the sentinel lymph node biopsy showed and whether I need chemo or not.
@Acinonyx2, I hope you got on ok yesterday.

For newbies, I was diagnosed on 17th March with breast cancer, invasive ductal carcinoma grade 2, oestrogen and progesterone positive, HER2 negative. I had surgery 22nd April, mastectomy and immediate reconstruction with implant.

@Vinorosso74 so pleased to hear that all went well yesterday and you got to come home so soon.

It seems like waiting is a normal if frustrating part of the process so I will try and calm down about it.

To introduce myself: I am 28. Married with 2 children aged 7&4. Very recently diagnosed with Breast Cancer. We don't know the stage yet or the treatment plan. It's Grade 2 and Estrogen Positive. I am a complete control freak so not doing so well with the lack of control the diagnosis leaves you with.

Really please the surgery went well and you are doing ok vino.

I have a very quick food question - are we allowed smoked fish? As in mackerel etc. I made the error of eating pate last round so keen not to repeat these mistakes. Be complete fine off hot food and the fish appealed in M&S but I'm wondering now if it's a no no.

Jean hi to you too. I take a suitcase of stuff on my chemo day as have the cold cap so am there forever. My hair is hanging in in there though. I would say eat as well as you can before it starts as it knocks off appetite. I take my laptop & headphones and watch films, read books, I wander round a fair bit too to keep my steps up as it's one of the days I feel better but this might be different for you. The best thing I take is a hot water bottle and my slippers. Comfort is everything.

@Vinorosso74 Glad it went well and the buzzing is a complete pain. I kept thinking it was my phone but bizarrely I missed it when it finished.

@quinin I don’t see why you can’t have smoked fish. I haven’t excluded anything except where I haven’t fancied eating it.

Hi all, just marking my place in the new thread. Vinorosso I'm glad your surgery went ok and you are over that hurdle.

I'm 41, married w two kids 7 and 4. Diagnosed late Feb with aggressive non hodgkins lymphoma (primary mediastinal B cell - basically a large mass in the space between heart and lungs). I'm now half way through an equally aggressive chemo regime which requires 5 day inpatient stays every 21 days.

Re the fish - I have to eat v carefully as no immune system but I've been having smoked salmon. I wouldn't eat pate or any kind of cold shellfish. It's basically about the food poisoning risk. I'd say smoked mackerel would be fine as long as it's not being hanging around open.

I just got home after lunch today - they did keep me overnight in the end. Very nice room to myself with a view even! Everything seems to have gone to plan. It's a very curious experience altogether. Like the chest equivalent of CHinese footbinding (had node clearance, wide excision of residual tumour and bilateral mammoplasty ie reduction). It is indeed the node clearance which hurts a bit. Surgeon came and took the drain out this morning but expects I may need needle drainage later at some point

Anaesthetist said he'd start me off to sleep via port then cannula - and then he missed the port 3 times!! gave up then had to do the cannula twice. What is wrong with people - am I cursed?? I was quite sick afterwards as well.

I do like my surgeon though Apparently he had a bevy of trainee surgeons in with him - sounds like quite a party!

@quinin I haven't excluded foods either but I have heard some people do as if pg (not that I did then really either!).

Constipation - lactulose or movicol. If the diarrhoea is really constant my friend's sister got something in hospital IV. I had a few days in some cycles (and terrible stomach cramps - fainted twice).

Recap of me: late 50s with dd15, stage 3 breast cancer, her+ and node+, had chemo 7 cycles and surgery yesterday! Now radiation and 10 months of Kadcyla as response has been incomplete.

But like others @Vinorosso74 @MrsPnut- now waiting on node pathology from surgery. I'm braced for there to be some cells in there - and treatment going forward is the same either way.

My chest is oddly light but I'm much too squeamish to look under the wrappings. It's not like a regular elective mammoplasty - there was no discussion of size and shape of outcome. I just have to trust my surgeon's judgement!!

@ChickandLamb My chemo started 6 weeks after diagnosis and that did feel like too long! I think about a month from diagnosis to treatment is about the average.

@Acinonyx2 great to hear that you are home and things went to plan. I hope you don't have a too long wait to find out about your nodes.

I am just very impatient so will have to work on that.

What a busy new thread

Glad to hear @Vinorosso74 and @Acinonyx2 came through surgery ok. Hoping the nodes don't turn out too pesky.

My recap: 48 with DSs 9 and 13, HER2+ ER/PR+ breast cancer dx mid-Dec, next week I'll have completed a chemo region of 3 x FEC and 3 x Docetaxol/Herceptin/Pertuzamab, mastectomy June 8th followed by radiotherapy. Phew...each thread the recap gets longer!

@ChickandLamb My BCN gave me two pamphlet books for my boys to explain things but they were a bit old for them - maybe ask yours, a local Maggies/MacMillan or even the library if they have anything suitable if you think your DC would benefit.

@AlbertCampion Are you already using a special toothpaste & mouthwash? I used the Biotene mouthwash every few hours at the worst points of getting a dry mouth. They also do a gel.

My chemo guilty secret is the Radio Times I go through it to see if there's any decent telly for post-chemo rest days & then it takes me ages to do the puzzles with chemo brain. I took two bags full of books, mags & crafts to my first chemo but I only looked at the Radio Times so a tradition was born!

My other top chemo tip is to plead for maximum anti-sickness meds if you're at all prone to nausea etc

Just going through my new bag of meds and see I have Filgram injections to prevent blood clotting. Anyone else got those? I'm in 2 minds as my platelets are still low on my last bloods.

Fragmin I mean