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

that should be One plus, and bold has failed !

@thereisonlyoneofme that does sound good - would be good to discuss those results with someone. Similarly, I'd quite like a conversation with my onc now I have my pathology results but I think these drs mainly talk to us when they feel a need to - rather than us needing to.

@thereisonlyoneofme That is a plus.

@Acinonyx2 My injection was the big version, one massive dose. I did feel a bit rubbish by yesterday evening and went to watch sewing bee in bed. I’ve taken naproxen last night and this morning and also skipped the ondansetron this morning and last night because I don’t like it’s side effects and I don’t feel nauseous.

I did notice a small hole on my wound yesterday morning and I left a message at the breast clinic for whomever was doing the wound clinic this morning to call me. Thankfully it was my surgeon’s first assistant so we established quickly that I know it isn’t infected, the hole is only about 6mm and I have the tools to dress it myself. I didn’t want a trip to see someone for them to do what I could at home.
And in a plus for me, DH is still working at home and has suggested chip butties for lunch.

@JingleJum I ate porridge every day after my diagnosis. Find it very comforting. It’s still my go to lunch now. Once you feel up to it, there’s lots of info online, especially about good diet during chemo. Try to stick to UK websites e.g. Breast Cancer Now for sensible advice.
@Acinonyx2 I do my own Filgrastim injections. I hate hate doing it. I do 7 days of my 3 week cycle.

@Lunificent I've just finished 3 x 3wk Docetaxol+ I found it slightly better than the FEC regime as I was terribly sick on that. With the Dox I was OK whilst on steroids for the first few days then I got slight diarrhoea & funny mouth but mainly breathlessness & fatigue. Oh, & delightful BV on the first one. No neuropathy as yet. We all get an individual serving of side effects!

@Acinonyx2 My oncogist told me the anaemia was due to the way the iron is packaged & sent into the bloodstream, so if you take supplements it will increase your stored iron (ferritin) but not make any difference to your circulating iron (haemoglobin). That's was probably the cause of my breathlessness as my haemoglobin went down from 14 to 10 despite taking supplements throughout chemo. I don't know when this effect subsides but I will ask when I next speak to him as I have other questions about resolution of chemo side effects.

@HauntedDishcloth. Thanks for telling about your experience of Docetaxol, interesting and useful.
I have a supplement question. I only take vitamin d at the moment as I don’t want antioxidants to interfere with my chemo. Do you know of other vitamin/mineral supplements I can take safely and that will be helpful during chemo?

Do you all get copies of the notes sent between docs/surgeons/consultant etc. I get them several weeks after the fact, but dont know if its a countrywide thing or just my Trust?

I get mine as they are sent to my GP, or from the NHS - they send them directly to me and copy my GP in.

Some consultants are more on the ball than others. I had my echocardiogram last Tuesday and saw the cardiologist straight afterwards. I had the emailed copy of his letter on Thursday.

Hi all,
Back home from the eye hospital.
The intravitreal Injection had no effect so not bothering with anymore (can't say I'm sad about that though!)
6 monthly reviews going forward as the nexus is classed as "suspicious" due to the fluid.
He's happy it's benign atm
Just sods law its in right in my fovea (central vision) so that means they can't do laser therapy so this is my vision now which is a shame.
Just waiting for the blood results and repeat mri now 😒
How you're all doing ok.
Re: consultant letters I agree with mrsp - some ard really on the ball. Others not so much.

@Lunificent I'm not sure about any other semi permanent solutions. Anything which could open you up to infection risk will be a no no. I would ask your oncologist. I checked with mine before I got the blading done. The only other thing I can think of is HD brows but I'm not sure how effective that will be if it's allowed (not sure if you wax) as it relies on your having hair there.

Also my second Covid jab was timed two days before my second round of chemotherapy to give me maximum time to recover from the first and two days in case I had a reaction.

I also get a copy of the notes which the consultant sends to the GP. They can take a while to come through but our post is terrible!
Food wise after surgery, I came home the same day and was craving carbs within 5 minutes of getting home! I didn't feel so good the next day bit found soup was good and either small pieces of melon or apple.
I think I'm sold on the microblading. Hopefully, I can get it done in time!

Fab sofa set @BadEyeBri. Gorgeous colour!

@ChocolateandCheese- sorry to hear that your consult is postponed. Hope you’re hanging in there.

@thereisonlyoneofme - that sounds positive

Thank you for the book recommendations. I have ordered Rise and The Midnight Library.

I have an appointment to discuss surgery options in July. I know I have to have a double mastectomy and lose the nipples. I was pretty certain I didn’t want a reconstruction but my BCN said I shouldn’t make any decision until I’ve had that meeting.

Nausea is just holding back this week. Like others have been eating plain food eg ham sandwiches, yogurt, soup, biscuits. Can’t cope with anything spicy or greasy. The thought of a glass of wine turns my stomach so the chemo must be working!

My hair is now coming out in clumps so will be time to shave it off. Only going to get my wig next Wednesday though so will be reliant on hats. I wish I have thought of micro blading as it’s my eyebrows I will miss. Apparently the stick on ones from simply wigs are good. DH is very upset at the thought of me losing my hair as he said it will make it feel real then.

For those asking about vaccines my BCN phoned through to my surgery and it had been requested by the oncologist. They do run their own clinic though so it was easy to just add me to their list. I was exactly 4 weeks after my first which they said was the minimum. I had no side affects from my second.

@Lunificent

Hi all. I have a question about Docetaxel (Taxotere) side effects.

I’ve just had round 2 of chemo (Epirubicin and Cyclophosphamide). I’m doing ok. I will be moving to Docetaxel, Trastuzamab and Pertuzamab for rounds 4 onwards.

I’ve read that the Docetaxel will have the most unpleasant side effects. Can anyone tell me, who has been through this protocol, how they found the the side effects of Docetaxel compared to their initial EC. I’m feeling a little scared in case it’s very difficult.

Also any thoughts on timing of my second Astra Zeneca vaccine. I had my first on March 8th. Last week of May would suit me but is that too early? Or could I go to mid June?

@Lunificent I had 4 sessions of EC (every fortnight), then 3 sessions of docetaxel mixed in with carboplatin. I felt a different kind of rough with docetaxel, the worst being god awful heartburn and acid reflux I have ever experienced! There was some neuropathy but it wasn’t too bad. And my nails went to shit - they kept splitting because they became so brittle. As for the constipation.... I also developed neutropenic sepsis while on docetaxel and carboplatin. Just as well the sessions were every 3 weeks as it took me about 14 days to turn a corner. Heartburn and acid reflux were the main culprits for me on this regime. Consequently I lost a lot of weight as I just couldn’t stomach any food - everything apart from weak porridge would send the heartburn flying. Omeprazole helped a little bit overall it was so shit it kept me up at night.

With EC I felt much rougher but it lasted about a week before I would start feeling like a human being again. Just really awful sickness and feeling like my body was shutting down and lots of shivers. And mouth ulcers I suffered from were ginormous. No mouth ulcer problems while on docetaxel/carboplatin.

Sorry to all the can’t eat after chemo people but I’ve just eaten a chippy lunch and managed most of it.
I’ll probably be really ill next week now when I have some lovely meals planned.

@balkanscot - thanks for your reply. I already have heartburn with the EC. I hope they give me something good for it.

I’ve booked my 2nd Astra Zeneca vaccine for exactly 11 weeks after my first and one week before my 3rd round of EC. Hope I’ve done the right thing.

@Lunificent I was given Omeprazole but they did say they could give me something stronger if needed. In the end I stuck with Omeprazole and copious amounts of Gaviscon.

It’s interesting to read that quite a lot of you are still waiting for Covid vaccine no. 2. I was given the date for my 2nd one when I came in to get my 1st one. Maybe that’s just NHS Scotland.

@MrsPnut mmmm... you are giving me ideas for my lunch tomorrow. I craved all the food I couldn’t stomach while on chemo: I dreamed of all the spicy/greasy/acidic food but when push came to shove just couldn’t stomach in the end. For some strange reason I absolutely craved tomatoes all the time (I love them anyway) but didn’t want to really eat them as the advice is to avoid them - they can aggravate mouth ulcers (tomatoes are acidic).

Lunificent I've just finish four rounds of two weekly docetaxel and it was ok tbh.

I did the cold cap and have managed to keep my hair (not sure if this is an issue for you). My main side effects were neuropathy-weird but totally manageable, acid reflux which I take omeprazole 20mg twice a day but my whole digestive tract was sensitive & unhappy. The constant minor bleeding from my nose is the thing that has bothered me the most as it totally knocked out my platelets. I had no nausea thankfully. My nails look odd and my skin is seriously wrinkly and dry but also strangely smooth. I just moisturise my hands and feet all day long with a lovely aromatherapy oil and my nails have been fine. After round four I seem to have lost the finger print on my thumb and my iPhone no longer recognises it

I did lose my appetite between day 2-6 and could only manage small amounts of food so mostly fasted but felt much more human by day 7/8 and could eat and exercise. By day 12-14 I felt amazing and back to normal thankfully - just in time for the next round.

From reading others experiences, i do think the EC sounds worse, so if you've coped with that, hopefully you'll be fine.

I had my covid jab on the 9th and booked in for the 26th May.

Hi newbie here. I’ve been lurking a little bit since my diagnosis 3 weeks ago and I’m really impressed with all the support, positivity and knowledge on here. I’m 48 (for a few more days at least) with 2 teen DS’s and a DH. I have triple negative ductal breast cancer - 2 lesions and in fact they are still investigating the second one to check that it is also triple negative like they expect.

I’ll be having chemo first and I saw my Oncologist for the first time yesterday. As soon as he got wind that I have private medical insurance he gave me a sales pitch about going private for chemo (in unrelated news, he has a private practice) with the main selling points being that I can have a port and use of a cold cap.

Does anyone have experience of the pros and cons of a port? It sounded like a no-brainer the way he explained it but I’m having second thoughts now.

I’m sure I read a poster who is currently using a cold cap so I’d appreciate any words of wisdom about it. My hair is pretty shit to start with (fine, greasy if not washed daily, not loads of it) so I don’t know whether it would be a good option for me. Like most people I’d love to avoid looking like a cancer patient if I can. The open tabs on my phone for eyebrow wigs are evidence of that...

I have a million more questions but I thought I’d start with those if anyone can help?

Sorry I’ve already thought of another question! I had my first COVID jab nearly 4 weeks ago and I managed to get the second one booked for early next week so it’s done before chemo starts. However it’s now looking like my chemo will be starting just 2 or 3 days after the second jab so I don’t know if that’s too soon? My oncologist was a bit vague when I asked - he said before chemo or during week 3 of an EC cycle or after it’s all done.

Hi @Lunificent
I had 3 EC then 3 docetaxal with pertuzumab and trastuzumab.

I had some mild bone ache for the first one. But nothing unpleasant like the feeling of hangover that EC gave me. It was so much easier to tolerate by miles.

I know everyone copes differently with the regimes but for me, the worst part was defo EC and once that was done I sailed through the docetaxal. I had diarrhoea a lot but I took the pills they gave me and it sorted it.

6 months on, I still have brittle nails but no other long term effects.

Best of luck 🤞🏽

Hi and welcome @MadamBuxton, there are lots of people on here with a port but the benefits of a port rather than a PICC is that a port only needs flushing every 4 weeks rather than every week and because it is under your skin then you can bathe and shower normally. With a picc you need to wear a waterproof cover to shower.
I had a picc with my last chemo because it was weekly and at least 3ltrs of fluid each time.
I am trying my FEC just through a cannula because it is lower volume and three weekly.

COVID jab should be fine too.

@MrsPnut you are not alone in the eating stakes. I am positively porky and had Burger King for lunch yesterday

Second brachytherapy today went much better. My spinal anaesthesia last the whole time for implanting the rods, CT, planing, treatment and removal.

Only one more treatment left. Roll on Monday night!

Hugs and hand holds to everyone struggling with treatment and the WAIT. With nausea I found eating small amounts of whatever I fancied helped. I also found going for a short walk around the garden in fresh air helped with nausea. The lethargy from radiotherapy is intense. All I can recommend is wrapping up warm and if your body says sleep then let it sleep. Be gentle to yourself, mind and body.

MadamBuxton so sorry you find yourself here. I went privately and would recommend it if you can, purely because you get more say with appointments times, the environment is nicer, you get your own room etc if needed, and the nurses are less stressed and more available. They have a chef too on the chemo ward that makes whatever I ask for which has been great.

I have a port and recommend it. It took 2-3 weeks to settle down after they put it in but has been fine since. It's been painless to use, easy to access and discreet. I feel cold all the time so take long warm baths daily and it's been really nice to not worry about it.

I also used the cold cap and managed to keep maybe 40-50% of my hair so far after 4 rounds of chemo. I didn't mind the cold cap at all, It just made me sleepy but loads of people can't tolerate it apparently. I took a hot water bottle and fat socks and just stayed warm with drinks and blankets.

My hair is fine too but I had loads of it to start with. I do think even if your hair falls out, the cold cap buys you time to get used to the idea. The CNS was pretty insistent on me trying it, and said I would loss all my hair in the first round if not, and I would not have been ready for that at that point.

BadEyeBri glad it went better today, hope you are managing to rest

MrsPnut- a chip butty! That brings back memories of many night bus journeys home in times gone by, delicious.

ChocolateandCheese sorry to hear your chemo has been delayed. Hopefully it will give your body a chance to rest before the next lot. I'm on FOLFOX too.

JingleMum - could you manage a smoothie if you've lost your appetite? You can add nuts, seeds etc to help with wound healing. I also find porridge a winner in most situations. Oatcakes and hummus have been a staple with a lot full of good fats and packed full of nutrients.