I’ve been back down in West Wittering for the weekend. We took our new dog, Bella, and it turns out she is very well behaved in pubs. Result!
@jeml Whitwhoo! You’re a stunner! You look absolutely beautiful in that pic. You would look beautiful with or without hair. I hear you re the covers on, covers off all night. I was like that already before the chemo as I was 53 (just turned 54) and then chemo exacerbated it so that I simply couldn’t regulate my body temperature all day and all night. Chemo finished and so did those hot flushes. I’ve had my bloods done and I’m told that it put me into full blown menopause and that I’m now out the other side. I’m now actually quite glad that I had the condensed version! You are only young so your periods will return. Great that you are planning Halloween. I have such fond memories of getting dressed up and trick or treating with my son and then suddenly he’s at secondary school and that time is over. All those childhood stages are so fleeting and it’s very important to enjoy them all.
@rrey I’m really sorry to hear that you’ve had to postpone Florida but at least we can both now say ‘This time next year…’ I’ve never been to Center Parcs. I think I probably should. You have also got me thinking that I need to start really planning Christmas. Last Christmas I was plunged headlong into fear and worry after getting scan results which rather bleakened it all so I’m going to make sure this one is exceptional. We always decorate and put up the tree on the first Sunday in December and my son (now 15) and I ritualistically watch Elf as we do it. I’ve made him promise to do this with me for the rest of our lives together.
Congrats on finishing chemo! Slap that bench!
@naughty_boob I hope you had a lovely weekend with the kids and please let us know how the scan goes. Hope you can keep the scanxiety at bay.
@arty1 I really hope that the meetings with the oncologist and cardiologist are positive. I’m so pleased that the latter comes highly recommended by our @kartoffel
I am about to enter my last full week of radiotherapy. Just 6 to go now. I still feel ok at the moment. Long may it last.
@salbert you’re nearly there with the treatment ! You’re going to have a great Christmas
Just left the hospital , oncologist doesn’t think there is any risk to my aneurysm from chemo etc and is happy that my heart will cope but is arranging another heart scan .
So my regime will be 12 weekly paclitaxel and herceptin jabs not phesgo as I’m node negative.
She’s done her best to reassure me re reactions saying that first time they’ll do a long day infusion and I’ll have plenty of pre meds, she said the most common reaction they see is being really hot and sick . The good news is she said I can go to the Kasabian gig I booked pre cancer with my daughter on 16th November and they’ll start chemo straight after so I’m going to mask up for the gig so I don’t delay my chemo .
It’s a lot to take in , I’ve come away with a huge folder
@Linda_Corinne I think it’s just down to the trust tbh , she also said they are looking at studies as to whether 6 months is as good as 12 and said if I’m struggling they’ll stop at 6
Hi @arty1 you will be having the same regime as I did.
So pleased you can go to the gig with your daughter, such a lovely thing for you both to do especially after her good news.
Some people on here have only had 6 months Herceptin rather than 12. The trial was called Persephone and I think some trusts reduce to 6 to reduce cardiotoxicity. You will have either and ECHO or a MUGA scan before you start and at 4 month intervals to check your heart function.
@naughty_boob I actually stumbled across that trial online , interesting, she said that it’s too early at the moment to decide on the trial and they still feel that 12 months is optimum but in cases of reduced heart function they’d be happy with six months . She said it affects heart function rather than changes to great vessels so she doesn’t think it would affect my aneurysm but it’s good I’m speaking to a specialist.
I’m waiting a heart echo appointment now .
How did you get on with that regime ? She said it’s usually well tolerated but the reactions frighten me . She went through the consent form with me and I said I’ll just ignore the bit about possible death otherwise I won’t have it !!
She’s assured me I’ll have lots of pre meds and a slow infusion rate but they want to start off with maximum dose.
The good side meaning chemo is done in 3 months and I’ll get echos every 3 months
Oh and I asked about ace inhibitors but she said the issue is they cause blood pressure drops so they prefer to just monitor the heart instead .
Also she said they’ll happily give the herceptin with an EF of 50 per cent and over
I had a reduced dose from the beginning because I have allergies and it is known to cause allergic reaction. I had an allergic reaction on week 3 and they reduced the dose again. Generally tolerated it relatively well. I cold capped and kept most of my hair, just some small patches above my ears and thinning. My scalp was very sensitive and felt very little bit of breeze. I took my anti sickness tablets for the 3 days as advised and as time went on the cumulative affect made me ask for different anti sickness. You aren’t meant to feel sick. I had a change of taste, wanted more salty food. I was extremely fatigued and regularly needed a day time nap. I had UTI and thrush in my mouth. By week 8 I had a high temperature and was hospitalised for 6 days, they said it was of u known origin but could have been a UTI.
I prepped loads of meals for the freezer. Most weeks I had 3/4 days feeling rough and the others feeling ok, but then 1 of those days I was back in the chemo chair. As time went on I had more rough days and maybe 2 good days, 1 back in the chair. I avoided handling raw meat and made sure all food cooked fully and invested in a food temperature probe. I ate what I could when I could, no large meals.
I’ve problems missed something as this time last year I would be week 6 of my chemo.
My main advise is be kind to yourself, let people help you, rest, listen to your body, if it doesn’t feel right, call your team.
Hi @arty1 so glad you have had a good discussion with oncologist and got a plan. I was on 12 weeks of Paclitaxol, and was a bit tired throughout mainly because of diarrhoea and i couldnt eat much, although cake was fine! Make sure they give you some Imodium to tske home, or buy it to jave just in case. I also got a weird rash on my hands which went away as soon as i stopped the treatment. If you get any peripheral neuropathy make sure you tell the team. I managed to avoid any infections or hospitsl stays. I dont seem to hsve any notable side effects from phesgo only. Great you csn get to see Kasabian prior to ttratment.
Yes @salbert i’m really looking forward to xmas as last year was overshadowed with worry about the lump, had disgnosis in january. I love decorating the house and cooking for the family. I’ve also booked a family holiday to cornwall for next year, but have several other trips in mind i’m planning - i have a notebook of ideas i have been compiling through treatment.
I’m just off now for cup of tea with my old boss, who was a reknowned breast surgeon until his retirement a few years ago and i shall sing the praises of the surgeons who treated me - the ones he trained!
@arty1 that is fantastic news about your daughter. Delighted for you both.
@isthisreal thanks for sharing your kadcyla experience. So glad its going well. Had full blown convo with oncologist last week. He was trawling through katherine trial results, im sure he was sick of me but i was really struggling to wrap my head around possibility of more chemo. It really doesnt sound at all like taxanes though, thank God. Im full of admiration, this whole thing is such a psychological battle as anything else.
I have oncology this week again post mx and axillary node clearance. I am extremely fortunate and incredibly grateful i got a PCR, really did not expect it as there was residual peau d’orange on my skin. Still up for rads and hormone tx plus continuing with herceptin, but i can see a light at the end of tunnel.
I know im a bit of a gritty realist which does cloud my outlook at times, but knowing what i do, i appreciate exactly how fortunate i am for an inflammatory BC diagnosis. But also i hope this gives hope (more than dr google for sure) to anyone else trawling through chemo right now.
Bit of nerve pain post surgery to keep me from overdoing the celebrations . And if my seroma gets any bigger i wont need a reconstruction .
Reading all your posts and hoping everyone doing okay. Xx
@arty1@pennyp oh my goodness how could I forget diarrhoea. Yes you need Imodium/loperamide and take at first sign of upset. My first week they didn’t give me any in my bag of goodies and my husband had to go to Tesco at 9pm. The outpatient clinic nurse had said diarrhoea was very common and apologised that Loperamide had not been added to my prescription.
So wonderful to hear you had a pathological complete response (PCR) to your chemo regime. I hope you are doing ok post mastectomy and lymph clearance and that your seroma shrinks soon. Are they considering drainage?
You sharing your experience is very important for this forum and all those reading our posts. For the many of us that interact I would say there is probably double that just reading from the sidelines looking for information.
Hope your oncology appointment goes well this week.
I had a reaction to my second chemo. Went really hot and became short of breath. They reacted so quickly and now I have extra steroids and antihistamines before my chemo through the drip. They also put mine through slowly. Last two have been okay
That sounds horrible but good they reacted quickly - did they put it through slowly after your reaction ? Was this Paclitaxel?
I’m so terrified …I’ll have a terrible reaction
@jaffaboob great news on the PCR , that’s fabulous news
. Talking of seromas , my mum visited sat the weekend and I showed her the wound, she said … oh you still have like a mini boob I said no mum that’s a seroma
@naughty_boob and @pennyp chemo is the gift that keeps on giving by the sounds of it !
I have a redundant colon (another congenital defect) so if I have the runs it will be a shocker as usually I have to take laxatives daily (for the last 33 years ) because I declined a bowel resection because I’m a wimp
I’m a bit worried as a friend who is on weekly Paclitaxel is really poorly with it
Its my mini boob as @arty1 put it . No. They dont want to drain it unless it becomes uncomfortable. I think the thinking is the body needs to learn to reabsorb it, and that wont happen if its drained and might need to be drained repeatedly. Surgeon also thought risk of infection and impacting end cosmetic result. Im actually very happy with scar. Its very neat, that internal stitching is great and its healing very well. Fair bit nerve pain in my arm if i overstretch but have decided to be patient with it -Intercostobrachial nerve damage from surgery. Im also on constant lymphodema watch now and wondering if i should get compression garment for exercise as the back of my hand and wrist is feeling tight on walking though min swelling. Contacted physio today and waiting for callback.
Happy to also report i have no side effects on herceptin subcutaneous. I wasn’t sure if id be okay as first 6 cycles were iv with pertuzumab and chemo and my bowels were in a heap, but ive had 2 injections now since finishing chemo and been absolutely fine. Taking all the wins i can!
Ah yes @arty1 Paclitaxel…I must add my voice to the many that have already mentioned Loperamide. Stock up! I didn’t get a huge amount of side effects and never got an allergic reaction but did have the raging trots for 12 full weeks. It’s good to have it over 12 weeks, I was told, as then it is a more steady dose and you don’t get the ups and downs so much as the people who have a larger dose every 2 or 3 weeks. I’m with you @pennyp re the cake as I couldn’t taste savoury but I could taste sweet. Cake is your friend. Stock up!
I also thought I’d developed a rash on my ankles but it turned out my cat had caught fleas and the buggers were biting me! Once we’d fumigated the house and de-fleaed the cat, it miraculously disappeared and I did not confess the truth to my team.
I’m so pleased you are going to Kasabian. I am going to ‘Mamma Mia! The Party’ that day and have a fabulous costume prepared. Silver tasselled boots and all.
@pennyp So you were having a horrendous Christmas last year too. Won’t it be lovely to enjoy this one without that shadow hanging over it. I’ve also been planning many trips and days out during this time. This weekend I’m going to see The Comedy of Errors at Shakespeare’s Globe. I booked it way back in the Spring so that I would have it to look forward to. Really important to do that, I feel.
@jaffaboob Complete response is wonderful news!! We do love to hear that. Good to see that you can put a positive spin on your seroma! Also, as @naughty_boob says, thanks for sharing because she’s right, it helps other people who are reading but have not posted for one reason or another.
I am now officially two thirds of the way through radiotherapy and it’s still going ok. We’re all kicking arse!!
Oh that is interesting…I wonder what type of machine does not require it?
Perhaps a newer one…well I opted out of the tattoos as I couldn’t bear another permanent reminder as I was already struggling with changes to my body.
Anyway they marked the area with ink crosses and covered with clear dressing but warned it could come off and this could delay treatment.
It has to stay on for 5 weeks and I told them I would be super careful but I woke up to find the dressing was peeling off and I only had it done yesterday!
They told me to come back in straight away if this happens and I guess I am delaying the inevitable of having the tattoos after all.
I was also surprised that the central mark was on my innocent boob which seemed unfair…so I guess I am not symmetrical.
I wonder was this the same for anyone else?
I am so surprised that you were in and out fast my appointment was 3 hours!
I was given Flamingel yesterday so thanks for sharing your regime and it is great to hear that it all looks fine.
And just to give you another Paclitaxel experience… my poo was a tiny bit soft (sorry!!), sometimes water tasted weird and looking back I was a bit tired. My nails are also rubbish after treatment but already nearly grown out and I only finished 3 months ago. I realise how lucky I was to escape lightly but fingers crossed it could be you too. Prepare for the worst and hope for the best.
. And if my seroma gets any bigger i wont need a reconstruction 
.
. No. They dont want to drain it unless it becomes uncomfortable. I think the thinking is the body needs to learn to reabsorb it, and that wont happen if its drained and might need to be drained repeatedly. Surgeon also thought risk of infection and impacting end cosmetic result. Im actually very happy with scar. Its very neat, that internal stitching is great and its healing very well. Fair bit nerve pain in my arm if i overstretch but have decided to be patient with it -Intercostobrachial nerve damage from surgery. Im also on constant lymphodema watch now and wondering if i should get compression garment for exercise as the back of my hand and wrist is feeling tight on walking though min swelling. Contacted physio today and waiting for callback.