Hi Salbert,
I know of one women who had Herceptin without chemo, she had a 5mm tumor and they did a six month treatment, I’m sure my Doctor would have given it to me if I pushed, I was just happy not to have it, as a matter of fact I was thrilled.
I know of a study in Japan where they were trying it without chemo, I’m sure you could find it if you Google, that was 2 years ago, I’m sure it’s finished by now.
We are self insured, depending on your insurance you can go to who you want and get whatever treatment you feel you need, the first oncologist I saw at the very beginning was dreadful, she wanted to throw the kitchen sink at me, she said I needed chemo radiation, Herceptin, along with surgery, I said No, I will not do chemo and she then told me if I didn’t do everything I would be dead in 2 years, well I ran out of there and never went back, after surgery I was told my tumor was 6mm not 1.6cm which was the original number after biopsy, I was delighted, then I found my oncologist who was near me at the time, he was great, he was pushing the Herceptin before I got the new number, after he said no benefit.
I see you don’t have ER+ so in your case the Herceptin and Chemo is a must, I’ve read so much about Her2+ and if you have ER+ and PR+ and a small tumor the Her2 behaves like a Her2- they say even if a hospital has financial trouble they should always consider giving Herceptin to Her2+ ER- PR- at all cost.
Hi @jols68 Welcome, welcome! Lovely pic. That total node clearance certainly makes your eyes water, doesn’t it. My consultant has told me that the mastectomy I am due to have, won’t be as bad as the lumpectomy plus total node clearance combo. It’s a horrid op. I followed the advice of the women on here who had done it and have done my arm exercises every day in the shower and am pleased to report that I have full mobility back now. Hang in there. It does get better. I just have a residual numbness left but I can live with that.
Immodium is our friend. I am in awe of those little capsules. They work wonders. Sadly the diarrhoea hasn’t kept the weight off that I lost through stress. The cakes brought that weight all racing back again when the chemo stopped me from being able to taste savoury and now it won’t budge. But then cakes are lovely and bring me much joy so I’m not giving those up!!
We all know what the mind does, telling you that it’s racing through your body and taunting you with thoughts of recurrence. Since meeting everyone on this thread I have learned that this type of cancer is very common. That’s not to do any of you a disservice for I know that every one here is special and wonderful and amazing and I could go on. But our cancers are common. The fact that there are so many of us with it and the fact that the statistics are so very good with our kind of treatment, means the odds are firmly stacked in our favour. This we must cling on to when those nasty little interlopers try to knock us from shiny perch. Really good luck for 17th July. Keep us posted.
@juxined Hello there! I’m glad you made it over. Aren’t this bunch just grand? (I never use that word but it’s apt!) What a horrid shock that must have been when that lymph node blew up. I remember that pit of the stomach feeling when you first find a symptom. Then for all of us, our fears came true but we are all still here. We lived through that terror and that interminable wait for results and yes, it IS traumatic. Those little lifts in the form of gift boxes from Little Lifts or Look Good, Feel Better, really do help. Stay with us and we’ll continue our journey together. I am counting down the days until my last Paclitaxel and time has never gone more slowly!
@Flan Trish, I’m so interested to know what the stats are for Herceptin alone versus Herceptin + chemo. I may have to get Googling again. I’m horrified that your first oncologist spoke to you in the way she did. Sadly not all of them have people skills that match their medical ones.
I am supposed to be going to see my brother tonight as it is his birthday but he has just told me he doesn’t think I should come into his pub as he has come down with the cold and cough that everyone around me seems to be getting. This means I have to hand over the large chocolate cake that I have for him at the door and not partake in it. Would it be so bad to carve a large slice out of it beforehand?
Hi Salbert. Thank you for yr reassuring message. I’ve managed to lose 24lb in weight since diagnosis but expect it will all go back on as I also have a love of cake and every time someone comes to visit they bring eclairs! I’m not complaining of course .
Welcome to the group. I walk talk to your team about continuing diarrhoea. Mine stopped after a few days with chemo and Herceptin, then once I have Herceptin alone I get a day or two and this is listed as a side effect. It’s not bad enough to take Loperamide/Imodium.
Welcome to our group. I’m so sorry about your diagnosis and the way you have been treated. Not having continuity between hospitals doesn’t help. My surgery team are one hospital and the oncology team in another, it’s not always smooth between the two. I will be thinking of you each week having your chemo. Have you joined the monthly chemo starters group, it was a lifeline for me.
Thanks for sharing as there will be other women who read this thread and say that’s me or that’s happening to me nd our comments will help guide them.
I totally get what you are saying about breast cancer and how many advances there has been in the types of treatment; even since I was diagnosed in 2021. I am in the East Midlands in the UK and can’t fault my treatment on the NHS, even though they are really up against it. I had a Diep reconstruction in April 2023 and have just had a date for phase 2 and hopefully that will be the last operation. That just leaves the dreaded Letrozole, but the year after next I will be done with it and hopefully this whole shitshow.
I was really happy to lose the weight, I had plenty of excess! I now have a healthier bmi of 23.
I was interested to hear you say that if you are ER+/PR+ and the tumour is small, then the HER2+ acts in the same way as HER2-. I really hope this is the case!
I really hope things work out for your friend and the trial is successful.
All the very best
x
Yes, why is it that all the things that are enjoyable are bad for you??! I still have a drink or two, but I won’t ever be smoking again. Interestingly like you I now have a very sweet tooth and I’m swiftly developing a sugar addiction! It seems as soon as you suppress one vice, another one pops up …
Hi Salbert,
I just looked through my files, and sorry to say that the Herceptin trial in Japan was for 70 and older who don’t want chemo, from what I see the chemo + Herceptin was the best way to go, Herceptin alone did well but not as well as both together.
You are getting close to your operation, I do hope all goes well, before you know it you will be looking back on like it was ages ago, that’s how fast time goes by.
I wish you all the best,
Take care,
Trish
I thought you might like to read this report for yourself, look up National Institute of Health,clinical differences in triple Positive Operable Cancer Subtypes in Korean Patients.
At the time I wasn’t getting any answers that helped, and this article was very good for me to read, I felt more positive afterwards.
If you come across words you don’t know just Google them.
About gaining weight, I need to lose 3 lbs my husband keeps buying me chocolate, I finally told him to stop, fat is our enemy, I asked my surgeon about sugar, and she said if you were overweight I would say no sugar, I’m quite small and thin and generally don’t have a problem, but when there’s chocolate everywhere I have a problem, I eat it.
Having a few drinks a week is not going to hurt you, I have friends that had BC 25 years ago and only quit drinking while in treatment, and never got a recurrence, there is no evidence that alcohol has anything to do with breast cancer, they just throw everything out there because they don’t have the answers.
There is evidence about fat , my doctor is thin as a wisp her mother and grandmother had it, so she’s doing everything she can to stay healthy, it was because of them she specialized in Breast cancer, that’s all she does.
My husband likes to say you don’t see many fat 80 or 90 year olds, I think being healthy is important I still work in the garden, and work out a few times a week at the club, I also like to walk around the Mall shopping, one Dr friend said just keep moving, and don’t fall down.
Hi all, ive been following this thread, and lots of others actually, but have actually moved over from February starters as they seem to be tailing off now. I had larger tumour diagnosed in January ER -ve, PR -ve, HER2+. Im nearly 68. Ive got four Paclitaxel to go and it seems like its been s long haul, but im counting down now! Side effects have been manageable so far, although i dont do anything except read a lot of books and occasionally meet up with friends and family. My main problem is the diarrhoea which i can usually keep on top of with regular Loperamide, although i did have an horrendous day on Sunday when there was nothing i could do to stop the runs and could not eat either, i got ‘told off’ by team and said i should have called in, i was better by monday though and dont know what caused it, it was Phesgo week but i dont think i have had that reaction before. Talking aboit Phesgo i have assumed i will continue with this after surgery, but i saw on one of these threads that Kadcyla was offered as an alternative and im not sure about that one as it seems like the chemo journey will go on and on, we will just have to see. I havent really discussed what happens next with my consultants as been dealing with things as they come, but im waiting for an MRI so the outcome of that will influence the surgical options. Im happy with the surgical team as i know them through my previous working life. They are onoplastic breast surgeons so i dont have to see a plastic surgeon separately unless i go for a DIEP, which they dont do and i dont think im keen on anyway.
Ive lost a bit of weight, but as someone said ive developef a sweet tooth and eat lots of carbs so it may not stay off, but ive just got to eat what i fancy at the moment.
Sorry to hear about diarrhoea, I have not suffered from it during chemo so cannot give much advice.
I have 3 paclitaxel left and have had 4 Phesgo injections out of 18 so far. 5th one on Monday :-(.
I am triple positive and was told indeed that I would switch from Phesgo to Kadcyla after surgery, if residual cancer is found which apparently is very likely :-(.
I really don’t like Phesgo but the thought of starting from scratch with 18 rounds of Kadcyla scares me. I can’t see myself with one more year of chemo infusion. I can’t wait to have my picc line removed end of July, and would need another one due to my narrow difficult to find veins. Hoping I won’t have residual cancer but so far I had no response to EC, then partial response to Paclitaxel. My dose was reduced after 1/12 due to dangerous liver function levels. It was getting worse again last Monday when I had my last paclitaxel and my onco did not want to reduce the dose further. I prayed I would not have to go to A&E again!
I am trying not to worry too much about the next steps, and be patient for my MRI scheduled for 25 July. let’s hope my tumours have shrunk more, although I won’t escape a mastectomy unfortunately.
Hope the rest your treatment goes well and that side effects diminish.
@MoonAndWaves Same. I will never smoke again now that I’ve kicked it. My last cigarette was 8th November 2023. I put that cigarette out and had no idea it would be my last. Nothing like a cancer diagnosis to give you a firm kick up the butt where that bad habit is concerned. I will have a drink here and there at special occasions once all this is over but I used to use my nightly wine and soda as a wind down tool before bed and now I have proved to myself that I can go to sleep without it. It would be crazy to go back to habits that don’t ultimately serve me well.
The sugar addiction in its place? That IS a thing, isn’t it! I have not gone racing to the sweet shop for Starburst since they were called Opal Fruits!! As for the cakes, it has to stop. But then, I love them. My weight is creeping up and I don’t want to have enough fat for a DIEP Flap. So far I’ve been told I can’t have one and after so many ops, I just want a simple implant now. The DIEP Flap seems like major surgery but it seems that surgeons favour it over implants. At the moment it’s not an option and I want to keep it that way.
@Flan I probably would have been mighty relieved if you had told me that I could have Herceptin without chemo, but since that option is not available and since I am only one chemo off being done with it, I’m actually really glad I’ve done it now. I feel like I have been thoroughly rinsed through. Good to hear that from what you see, the chemo + Herceptin gets the best results.
Also, great to hear that your friends took up drinking again without recurrence.
Hi @pennyp Feb Chemo Starters is trailing off now, you’re right. People are finishing chemo. I’ve got 1 Paclitaxel left but I agree, seems a long haul. Sorry to hear about Sunday. That must have been bad if even Loperamide didn’t work. I’ve been chucking lumps of frozen spinach straight into the Nutribullet every morning and only saw yesterday ‘DO NOT EAT RAW’. Oops! Glad to hear you only had one really bad day of it. So you’ve developed the sweet tooth too! I think part of it for me is that I cannot taste savoury. That and the fact that I have to have ONE vice! I’ve given up everything else.
@marionse25 You have had such a rough ride of it that I’m actually going to celebrate the fact that you have been spared the diarrhoea!
Thankyou Marion, you sound like you are having a tough time. Im sorry the EC didnt seem to work, but hopefully even with reduced dose the Paclitaxel will have had some effect. My dose was reduced a bit too because my blood counts were getting too low, but fortunately liver and kidneys ok. I also have a rash on my hands that i cant get rid of even with Hydrocortisone 1% and Aveeno cream that my oncologist kindly prescribed. I have a port rather than a Picc line thank goodness and its been no trouble at all.
@salbert I do like cheesy potatoes as well as sweet things! Its difficult trying to find nutricious food whilst eating low fibre. My daughter buys me chicken bone broth with lots of good stuff in it and i have found some nice green juice by Innocent called Green wonder. Btw i saw that ylu did some Qi gong the other day, my daughter loves this for relaxing, she has long covid and struggles with fatigue and a numerous array of symptoms not dissimilar to some of our side effects, but unfortunately with no end in sight - i wouldnt trade her situation with mine. She has also done a Reiki course which she promises she will try on me - has anyone else had it? I go to acupuncture which the therapist tells me should support my immune system and bloods and it has definitely help with the peripheral neuropathy in my fingers. I just feel as we are so helpless in terms of the medical treatment it feels good to take control of some aspects of health if we can.
@pennyp I am truly jealous that you can taste cheesy potatoes. I cannot wait until I am able to taste cheese and potatoes again.
I have to say that I have really embraced the yoga/Reiki/meditation thing. It has all helped massively. Heather, who does the Reiki sessions at East Surrey Hospital, is just this amazing spiritual teacher. I’m going to try her Tuesday night classes in Dorking. I think the holistic approach takes care of other aspects of this journey and for me that’s essential as I certainly can’t separate mind and body. In fact, if my mind isn’t well, then my body isn’t ever far behind.
I have just had a sip which led to a few gulps of my husband’s plum porter. (Not a euphemism! ) Wow! It was utterly delicious. That’s something I’m going to be seeking out and enjoying as soon as my liver stops groaning.
I had Paclitaxel and Herceptin and suffered terrible diarrhoea mainly controlled by Loperamide. I have to say on the Herceptin weeks it was worse and even now with Herceptin alone I still suffer an upset stomach but not bad enough to take Loperamide. I’ve rattled so hard with all the tablets, I don’t need to take anymore!
Diarrhoea is on the the things you need to report to your Treatment Helpline any time of the day. If I remember from 6 months ago when I was having chemo, anything above 4 episodes of diarrhoea a day needed to be reported. I think you can become very dehydrated and may need a drip to rehydrate you.
I hope you don’t have this again, but please call if you do.
Thanks @naughty_boob , i did wonder if the herceptin week made things worse. I wil make sure im prepared next time with extra loperimide if necessary and i promise to call team if bad.
@salbert you made me laugh about your husbands plum porter. . Well you have obviously got something to look forward to now… I’ll stick with the rose i think. !
My MRI is booked for next Monday (eek), fingers crossed it goes ok, it was so uncomfortable last time.
Penny
It looks like my bloods are ok so my last Paclitaxel is going ahead. Woohoo!!! We don’t ring a bell here at Royal Marsden Sutton, so I have one in my bag ready for when I get in my friend’s car this evening. I also have two trays of cakes which I suppose I should share with the others on my ward.
Great news. I didn’t know not every hospital doesn’t ring a bell when you get the all clear. I wonder why! Seems a shame that you just get to walk out without marking the occasion. Enjoy ringing that bell in the car with yr friend x
@jols68 Thanks I’ve finished chemo!! Woo-hoo! @naughty_boob It’s done!! I’m told the reason that not all hospitals ring a bell is out of respect for some of the people who never get to finish treatment which I totally get. I had promised myself every week as I made the walk from Maggie’s to the chemo ward that I would slap a bench instead. Every week I walked past it, I told it that I would slap it! And I did. I recorded it and posted it on Facebook and invited all my friends to slap a bench too. Many of them have and it’s most entertaining. I really wish you could post vids on here but unfortunately you can’t. I think bench slapping should be the alternative to ringing the bell.
I have told I need a mastectomy in a couple weeks completely out of the blue it was a shock.
I do not have any trust or confidence in my team and I am trying to get a second opinion or be transferred to another hospital.
I had a referral from my breast unit to another hospital to discuss reconstruction such as Diep etc however this has been denied which is unfair as women should be given time to consider all reconstruction options available to them.
It appears to be a postcode lottery and I am thinking of going to my MP to complain.
I have contacted three surgeons for a second opinion about the mastectomy but they are all on holiday!
The clock is ticking and I feel like my mental health is really suffering.
.
) Wow! It was utterly delicious. That’s something I’m going to be seeking out and enjoying as soon as my liver stops groaning.
you did it Xx