I’m glad to say I officially had my last chemo today…so glad to finish this part of my journey…however taste has already gone and side effects have started! Though this time I know I won’t have to go through this again so it will be worth it!
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Hi @norts
I’m so glad you have found us. You are not alone. Doom googling is one hell of an apt expression for that thing we all do but really should not. A huge part of this journey is keeping our sanity in check and I believe that it plays a massive part in our overall health. Anxiety and stress causes a lot of illness.
I think we all know the terror that comes with this diagnosis but it’s also really heartening to hear from the wonderful women on here that have come out the other side. You are quite a long way in to your treatment now so it’s definitely the right time to do some work on your emotions about it all. I had counselling and will be booking onto the Moving Forward course fairly soon, I think. Are you done with surgery or do you need to have more? I have one Paclitaxel left to go and have my mastectomy in just under 6 weeks time.
But hey, chat away on here. I feel it helps so much to share and compare. How are you today?
@chellebelle MASSIVE CONGRATULATIONS!!! 
I am so chuffed for you to have finished chemo. Hopefully I will be where you are by Friday. It seems insurmountable at the start but as everyone said, you do get through it, one day at a time.
Personally, I have had to call a halt on wig-buying as it was getting out of hand. I have bought some lovely ones but I realised it had gone too far when I couldn’t get to sleep one night, despite having taken a sleeping pill. Before I knew it, I had reached out and grabbed my phone and ordered another one. Something within me having been satisfied, I then rolled over and went straight to sleep. In the morning I could not remember what I had ordered or from whom. 2 weeks later this monstrosity arrived from China. And now you see why I have had to implement a self-imposed ban!
Love to you all,
Salbert
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@salbert I am good today. Lots of sport to follow ( T20 cricket and Tour de France cycling), a sit in the garden with my neighbour and me and my 15yo son testing a board game we have developed. Not all my days sound so impressive!! A lot of distraction from emotional and mental things. I’ve also been thinking about a Moving Forward course but am not quite there mentally. I had my surgery first so next step for me after chemo is radiotherapy.
I have to say I am still chuckling about the knitted hair.
Hi Sal,
I have been reading all the blogs and I’m amazed at how well everyone is doing, I was diagnosed in November 2021, I had a lumpectomy and it seems the IDC was gone with the biopsy, it was 6mm triple positive, what they found was DCIS high grade, my ki-67 was 11, no chemo, and my oncologist said no Herceptin because there was no benefit as the cut off date is 80 and I was 77 at the time, I went on letrozole for 10 months, had to get off couldn’t take the side effects, anyway I had mammograms every six months and I’ve gotten the all clear, next one is December.
Have you ever been told that herceptin doesn’t work for everyone, I did have radiation and I feel great, I’ve moved house since my diagnosis, starting off with new doctors is a pain,
Why did you have to have so many operations? And how come they recommend Herceptin, they don’t usually give it under 5mm, I really was going to refuse it if offered, because I have high blood pressure, I was afraid of heart problems.
So I’m rolling the dice!!
When do you start Herceptin?
I wish you good luck with it,
Trish
Hi,
I’m one of those, except mine was 6mm triple positive with DCIS, no chemo or Herceptin, I’m 2 1/2 years on next Mammo is December, fingers crossed.
Like you I read if it comes back it’s usually in the first couple of years, and it’s generally local, I was on the letrozole for 10 months, had to get off because of the side effects, doing better now that I’m off of it., are you taking any hormones? If so how are you doing?
I did do radiation!
Trish
@juxined I hope this finds you and you can come and join us HER2+ gals. I couldn’t think of a better crew even if you threatened to take away Toblerone for the rest of my life.
@norts I am really glad to hear you are feeling ok. I also have a 15 year old son but we haven’t developed a board game so you are way ahead of us there! We once tried to sit down and learn how to play Uno but a song came on the radio that we liked and we both leapt up and danced around the kitchen and came to the conclusion that focus was not our strong point. That’s extremely impressive. Let us know what happens with it. How exciting! It’s so important to distract ourselves from this bc thing. It’s always there, like a fuzzy irritating noise in the background but very satisfying to thwart it here and there by managing to push it from the forefront of the mind for a bit. Glad the knitted hair gave you a chuckle. It has, by far and away, been the most popular of all the headwear, hats and wigs I have invested in. How can that be??!! I’m not sure she is my favourite cousin anymore! Let’s keep in touch re the Moving Forward course. I still have a long way to go with treatment so I may leave it until I am fearful of being pushed out of the nest and being asked to fly on my own. Enjoy the sport. England match this evening, I believe.
Hi @Flan Great news that you have the all clear after your experience in late 2021. I have been told Herceptin is something of a wonder drug but a nurse in Maggie’s told me that sometimes they just don’t know why some people get a recurrence or why treatment doesn’t work. The stats are fantastic though, aren’t they. I feel your pain, moving house. It’s wretched. I’ve done it too many times to count and moving doctors is particularly worrisome. I hope you’ve found a good one.
The reason I had so many ops is that my consultant wouldn’t agree to a mastectomy and kept performing unsuccessful lumpectomies until I jumped ship and went private. At Royal Marsden they put me straight onto chemo and Herceptin due to the HER2+ status and said it would be a mastectomy afterwards. I wish I’d gone there right at the start. I get Herceptin as it had made its way to my lymph nodes. So far no heart problems. I started Herceptin about 2 months ago now. No hormones for me. I’ll get radiotherapy in October, I’m told.
I’m about to go for a long dog walk and tonight I will be experiencing my first gong bath which I am told is deeply relaxing. It sounds amazing. I’ll let you know if I drift out of there in a zen-like state and have a night of vivid and bizarre dreams. I hope so!!
Happy Sunday all,
Salbert
xx
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That’s fantastic news. Be kind to yourself as it will be a while until you feel ‘normal’ and your immune system improves.
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@salbert You look beautiful in those wigs. I really don’t know what to say about the other wig!! You could always blame the drugs for your compulsive purchases 
. I can’t believe you are on your last chemotherapy this week. You have done fantastic!
I noted in your last post that you are going for a long dog walk. Did you get a new dog? The last I hear from you was that you’d been let down. 
@norts. Welcome to the group. We are a supportive bunch. I’m on 14/18 Herceptin, with the end in sight in September. Next Friday is a year since my surgery. I finished chemo mid December and radiotherapy in January. I booked a face to face Moving Forward course which is mid July. I wasn’t ready to Move Forward so didn’t see the point of the course until I was ready. I think it’s a personal choice, everyone deals with their diagnosis differently, some change their lives, some keep the same and others put their heads in the sand. There is no right or wrong, it’s what’s right for you.
@Flan hi and welcome to the group. Oncologist use the NHS predict tool to decide on treatment plans. Dr Liz O’Riordan spoke on an Instagram live a week ago about how the toll has been changed and chemotherapy is only offered if your chances are improved by at least 5%. They didn’t mentioned whether this was applicable for those of us HER2 that need chemotherapy for Herceptin or Phesgo. My predict score was only 1.7% for chemotherapy. I have a heart tachycardia issues and on medication as well as a family history of heart problems but still had Herceptin, chemotherapy and radiotherapy that all affect my heart. I am regularly monitored through Herceptin with MUGA scan. My ejection fraction has reduced from 68% to 60% which is still in the normal range. Herceptin is believed to be a lifesaver for those of us who are HER2 positive as it’s a more aggressive cancer. Some people are on a trial for 9 injections or infusions compared to the standard 18. Trials show less cardio toxicity and still good outcomes. Again your team would have discussed your diagnosis and the best treatment for you. If you are concerned or have more questions I would suggest calling the BCN nurses or your own team for a chat.
- Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
I have also had issues with Letrozole side effects that I paid privately to see a menopause specialist as the oncology team gave me some information and then didn’t follow up the side effects. They seem to think it’s something we have to live with but we need quality of life as well as knowing we are doing our best to prevent the cancer from returning. I have been having Fezolinetant (Vesoa) for 2 weeks and my hot flushes have greatly reduced, it’s private prescription only at the moment so not cheap but it was worth a go to prevent my insanity. I’m not sleeping that much better as I have an irritated bladder caused by the Letrozole and hoping that will settle with imvaggis and blissel that are vaginal estrogen. Lowest dose estriol. NHS works more slowly for that prescription as the consultant wrote to my GP to prescribe and they drag their heels processing letters/emails. If I’ve not got the prescription by mid next week I will email the consultant who will write an NHS prescription and post it to me. I am on a waiting list to see her in the NHS and even with cancer priority it’s about 8/9 months.
@suedot How are you feeling after catching Covid? I’ve heard there is a new strain going around yet again.
Hope everyone is enjoy the longer days and the sunshine when we have it 
Take care all
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Hi M&W
I have a similar situation as you, I was diagnosed in Oct 2021, surgery lumpectomy in Nov radiation in January 2022, the results were 6mm invasive Her2+ ER+ PR+ with DCIS, which was not measured, but high grade.
I was delighted not to have Chemo and Herceptin, I read when it’s small like ours the Her2+ is not an issue if the surgeon got it all, I spoke to my surgeon about that and she said yes that’s true, when you have DCIS along with IDC they go by the primary which in my case is 6mm IDC, and there is no treatment for that except radiation, and in your case no radiation because you had a mastectomy, I’ve had 3 mammograms since and now back on my yearly schedule due in December i get the results right then and there, I feel well and try to exercise, I’ve always eaten healthy food, and I do like a couple of drinks a week, which I will continue.
I also read that when you have triple positive it tends to act like Her2- so if you can tolerate the letrozole good for you, I couldn’t and now I’m rolling the dice.
I wish you good luck with your next Mammogram, I think you will always be nervous when it comes around, I know women 20 years out and they still get nervous, it’s only natural.
I will be 80 in Oct, I was diagnosed the week of my 77th I was totally floored I never dreamed it would happen to me, the ER+ is actually a good thing, if it were - then they bring out the big guns, so I’m very grateful the way it’s all turned out, lots of prayers pulled me through.
All the best,
Trish
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Thanks Sal, it’s definitely been a journey…I guess radiation next to come in a few weeks! Love seeing all your wigs, I’m like you I’ve now got so many I need to stop buying them lol!!
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Hi Trish,
It’s good to hear you’ve been all clear so far. It’s always reassuring to hear from someone else who was not offered the chemo/Herceptin route that is doing well.
I was told I had high grade DCIS and the HER2+ idc tumour was within this area; they seemed to imply this was a good thing as it was just the one area.
As I had a mastectomy, I didn’t have radiotherapy, but I am three years in with Letrozole which is dreadful and I am counting the days until I can stop. I would love to stop taking it, but I am afraid to risk it to be honest, probably because it was the only treatment offered. After my diagnosis I lost 4 stone (mostly from fright I think!) and I exercise 3 times a week as well as dog walking twice a day. I stopped smoking and cut down on alcohol and eat healthily. All the cancer was removed during my operation so fingers crossed I am doing all I can.
I wish you all the very best - onwards and upwards! xxx
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@naughty_boob I’m interested to read about your bladder irritation with Letrozole. That was by far my biggest issue. I tried the vaginal lubricant stuff but it wasn’t enough, then I persuaded my GP to try me on solifenacin and that’s done wonders. He wants me to have a blood test before I can go on repeat prescription. It’s for an overactive bladder/spasm which is how I’d describe my symptoms.
Maybe take a look: Solifenacin – a medicine for treating symptoms of an overactive bladder - NHS
Sending pink love
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You’re doing everything right, I’m over in Florida so I’m not on the National health system, they are following the protocol exactly, my oncologist was Greek he was good, I was living in Georgia then, we moved last September, I’m not going to bother getting a another oncologist I don’t see the point, I’ve got my referral for December, I did go to Boca Raton for the last one, the girl was a bit rough and it hurt for a couple of days, so I’ve decided to go to Jupiter Medical I’ve heard great things about them, my new neighbor had ovarian cancer and recommend them highly, also believe it or not the butcher at the supermarket gave me the top surgeon’s phone number as his wife has trouble with large cysts, I may call him before I book my appointment, I’ve seen him on TV his Mother had breast cancer and he seems very caring, we need all the care we can get, it’s no picnic and it’s ongoing.
Another friend in Georgia got ovarian cancer right after me, and is still in treatment, one of the cancers in her lymph node is resistant to the Chemo, she is in a trial for 6 months, I pray this new treatment works for her, she is 75, next door lady is 70 I will take mine any day over theirs, Breast Cancer has come along way, we’re very lucky to have caught it early
I hope you have put the weight back on, stay healthy, all the best,
Trish
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Hi I’ve recently been diagnosed with HER2 positive invasive ductal Ca grade 3 All other receptors negative
Tumour < 2 cm so had wide local excision and sentinel node biopsy and tumour margins clear and negative sentinel nodes
As Grade 3 they giving me 12 doses weekly Taxol and 3 weekly Herceptin for year
Had horrendous reaction to first subcut Herceptin injection and ended up in Resus for monitoring as needed Adrenaline - very scary
They going to try it again but iv with hydrocortisone and Piriton first and give very slowly - still very scared about how will react
Oncologist said not happy not giving Herceptin and she hoping next dose will be ok so 
Really find posts very helpful and informative as long journey ahead Sending positive vibes to all xx
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I have urge incontinence, can’t fully empty my bladder, need to go frequently especially at night and I used to go to the loo just in case if I was going out (I was told this is really bad). Thanks for the link but as I can’t fully empty my bladder this is not suitable. I had previously met a bladder nurse in perimenopause and had to measure my urine on each occasion. I wasn’t fully emptying my bladder then and had very similar symptoms. I was told to restrict my liquid intake to 2 litres a day and less before bed. Told to ‘hold on’ as long as possible to reduce irritation in the bladder. I have tried to follow this advise, the holding on in the day is easy but at night it’s more problematic. Once I’ve woken with the urge I try to hold on but ultimately I have to go.
The menopause specialist believes it’s menopause related as it’s very similar to what happened before.
Hi @docb
You are having the same regime same. I finished chemo in December and am on 14/18 Herceptin. I had a reduced dose of Paclitaxel due to allergies and had a bad reaction on week 3. They prescribed an antacid, steroid and antihistamine to help prevent any more reactions. Lucky for me no further reactions but the steroids caused terrible insomnia.
Weekly chemo is cumulative, it get harder as time goes on, I had a few good days in the first 6 weeks, then I had 2 good days, with one back in the chair. My cancer centre is 30 miles away and with cold capping I was out for at least 5 1/2 hours up to 7 1/2 hours as they sent me 40 miles away for my last chemotherapy. It doesn’t give you time to do anything.
There is a monthly chemo starters group which is very supportive during your treatment, everyone is on their own individual plan but you can share side effects, prevention of them and treatment to help. Here is the link for June as you say you’ve already started.
Fingers crossed you will have no further reactions.
And obviously we will be with you through your treatment as well.
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Hello everyone
I have to say that the gong bath I went to last night definitely did something. My scepticism was fighting with my urge to let go to begin with, but then at some point the sounds just kicked in and it was lovely. I felt utterly chilled by the end and had to go straight to bed. I slept like a log. There is something in it, for sure.
@Flan - Seeing that you are based in the US reminded me that I was told that in the US they will give Herceptin without chemo but not in the UK. I wonder if some of us here in the UK would not have been given chemo if we were allowed to just have the Herceptin? You are quite right in that breast cancer has to be one of the better cancers to get. We are lucky that there is so much good treatment for it now. It really is such a shock to be told you have it, no matter what the age and despite knowing that 1 in 7 women get it. May you stay clear until you are 150! At least.
@docb Welcome and I’m sorry to hear you had such a horrible response. Hopefully they will be prepared next time and your body won’t have such a shock. It’s bad enough without having to suffer an allergic reaction.
@MoonAndWaves I am right with you there on the kicking all my favourite bad habits! I loved my late night wine and soda and 2 cigarettes. I knew it was bad and it used to panic me that I was routinely poisoning myself but I loved it! I am also walking every day, eating healthily and no longer touch alcohol or cigarettes. Could this be why I keep racing as fast as my current haemoglobin levels will allow, down to the Londis just before they shut to buy chewy fruit sweets? Probably. Although by previous standards, this is positively virtuous. If that’s all I am doing wrong then I deserve to be admitted to a nunnery. (But I’d rather not. 
)
@naughty_boob Still no dog. We have a next door neighbour who vaccinates all the rescue dogs for a local rescue centre looking for us now. I have a feeling it may not be too long before I am twisted right round another furry paw.
Happy Monday, all.
Love Salbert
xx
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Hello everyone. I’m also HER2+. I’ve had 7 rounds of chemo and just had lumpectomy + total node clearance and am recovering at home. Get my results of surgery on 17th July and hoping for good news. Surgery was much more intense than I had imagined and I’m now 9 days post op and my under arm incision is quite painful still. My biggest problem is diarrhoea. Everything I eat seems to go straight through me. Thought it would settle after chemo but unfortunately not. Then yr mind plays tricks and you start to wonder if cancer has spead elsewhere. The whole thing is such a mind f#*@.
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Thank you ladies for such a warm welcome to the forum, it’s really lifting to be in touch with others that know exactly what I’m going through and to pick up tips along my journey.
Let me tell you a bit about myself, I’m 65 years old and live in the Scottish Borders, I’m originally from the NW of England where all my family still live.
You might want to grab yourself a cup of tea before reading further as this is a lengthy story.
26 years ago I had some health issues and ended up with enlarged lymph nodes, I was admitted to hospital for various tests and I had a lymph node in my groin and one from my right armpit removed. Tests came back as inconclusive and eventually my health improved although one lymph node under my right arm remained enlarged (marble sized), I just put it down to the fact that it was the size it was as its neighbouring lymph node had been removed, health professionals didn’t seem concerned when I explained the story behind it.
I’ve regularly attended breast screening and all has been fine up until about 5 years ago when calcification was spotted, however 2 years ago the calcification seemed to have disappeared, or it wasn’t noticed.
Fast forward to March 12th, I was lying in bed and happened to feel under my right arm and to my horror noticed that the marble sized lymph node had increased in size to golf ball sized. How had it got to that size without me noticing. I made an appointment at the doctors and the doctor agreed that it was unusual and contacted the hospital for specialist referral. I wasn’t too concerned as a couple of days later I ended up with a terrible cold and I thought the two were connected
My appointment with the specialist came through for 9th May, so I went along expecting just to have a mammogram and to be given the all clear. The specialist was horrified when he felt the size of the lymph node, it measured 30mm. Several mammograms later they took quite a few biopsies from the right breast and told me I had to come back in 10 days time to see the MacMillan nurse. I left the hospital feeling deflated. 10 days passed and I returned to be told that I had grade 2, HER2 breast cancer in my right breast and also in the lymph node. The following day I was booked in for an MRI scan, a week later a bone scan and CT scan. The MRI showed that there was another area in the same breast (behind the nipple) where there was calcification so they referred me to a different hospital in Edinburgh for further biopsies to be taken using specialist equipment. 2 weeks ago I received a phone call that the 2nd biopsy revealed DCIS but that it wasn’t invasive. An appointment was made for me to have further markers inserted in the DCIS as the markers inserted during the biopsy at the hospital in Edinburgh weren’t compatible with my hospital’s equipment. So last Friday I went for my appointment expecting to have the markers inserted to find that they wanted to take further biopsies as there are other abnormalities. It’s all been rather traumatic and overwhelming as you will all be aware.
In the meantime I’ve started my chemotherapy, which will be every week for 18 weeks, I’m having Paclitaxel and every 3rd week Pertuzumab & Trastuzumab injection, the Oncologist is hoping to include Carboplatin at a later date but I also have a low white blood cell count which needs weekly assessing.
Halfway through the chemotherapy I expect to have another appointment with the surgeon to discuss options, it looks highly likely that it will be a mastectomy followed by radiotherapy.
So this Thursday will be week 3 of my treatment, up to now side effects haven’t been too bad although I’ve had terrible indigestion and constipation.
So in a nutshell that’s my story.
One thing that has brightened my day has been receiving a lovely gift box of goodies from Little Lifts, I spotted the details on this forum – thank you whoever posted the details, it brought a smile to my face
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