Hey, does/has anyone found that as they are continuing their Herceptin treatment (after the active stuff has finished) general health has taken a bit of a nosedive? I find myself with random low level sniffles, sore throats, upset tummy’s, exhaustion. None of which stay for very long but feel very much like the Herceptin is having a cumulative effect. I suspect my tamoxifen sleep thief doesn’t help! My oncology team are aware and aren’t worried, I’m just feeling so depleted by it. I’ve got 5 more to go!
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Hi all
Had my first treatment today all went well.
Howver have very high blood glucose this eve 26 and so thirsty and weeing loads!
Also leg pain from the phesgo injection did anyone else have this? Xx
I would suspect your frequency of sore throats etc are due to your lower immune system. Chemotherapy knocks it really low but Herceptin can also lower your white blood cells that fight infection but not as much as the chemo did.
I have found that I hunkered down and wore a mask while having chemo as it was over the winter months. Since February/March after having another Covid Booster I’ve been out and about as ‘normal’ but am very cautious about people who are coughing and spluttering. I have had a lot of sore throats, croaky voice and sneezing but that could also be pollen/allergies. The upset stomach is a definite side effect of Herceptin/phesgo.
The exhaustion and fatigue is a mixture of Herceptin/Phesgo and your Tamoxifen/Letrozole/Anastrozole.
I found this:Cancer-related fatigue is extreme tiredness and exhaustion that doesn’t go away with rest or sleep . It can affect you physically and emotionally. It’s a very common side effect of tamoxifen and may last for weeks or months after your treatment has finished.
I have 1 more Herceptin to go and was informed it could take. 6/12 weeks for my immunity to return to normal.
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Thanks for replying 
1 left…I keep visualising how I’ll feel when I reach that milestone!
You’ve said what I suspected, I just need to accept that for a while yet I’ll still be physically vulnerable. X
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I counted down my 12 weekly chemo and then started with Herceptin in January, once I got to 9 I knew I had less to go than I’d had. That was a big moment. I will be so glad when the final one is done but still have to accept a little while longer being vulnerable.
It’s hard being vulnerable but I felt it better to protect myself than catch something that would make me feel awful, put me in hospital or delay my treatment. Some people live their life to the full even in chemo and that’s their choice. It’s not for me.
You do what is best for you
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Yes @naughty_boob i did the same, i kept away from friend gatherings and didnt do any indoor dining. I saw friends individually for a while. I have a hepa filter for lounge, mainly for when my granddaughter comes to visit, as you know 2 year olds are reservoirs of infection. I wore a ffp2 or N95 mask when out shopping. I was already covid conscious because my daughter has long covid and the last thing she needs is to get again and reduce baseline. Ive been fortunate ive not hsd any delays to treatment, infections or hospital admissions. Although i know you can still take all those precautions and still get sick.
Just had my op yesterday, came home last night all trussed up with pressure dressings PICO and snug fitting post surgical bra which stays on for a week. Dont feel too bad today, although not really up and about yet. Good news no lymph node incolvement seen on OSNA.
@marionse - havent heard from you a while, are you okay. ? I think you said you were due to have op today but were getting a second opinion. Hope all goes well for you. Big hugs, ouch that might hurt!
Penny
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Just wanted to reply about the leg pain after Phesgo injection question. My first two I felt were rushed and they were both very sore afterwards - I had what felt like a dead leg and it was sore in general around the injection area for days afterwards. My third one I told the nurse and said I think they’d done it too quick before, and she went really slow. Massive difference - no dead heavy leg and no pain in the days afterwards. Maybe worth asking them to go slower with it 
@pennyp you sound like me I also bought a HEPA portable filter. Yes children are full of germs that’s why I’d don’t go back to work in school. I used to catch things being asthmatic and having bc made me realise life is too short. I need to find something new to do. I volunteer on here and at a local foodbank, I managed to get redundancy to have time to rethink my future.
Glad the operation went well, be kind to yourself, everyone heals at different rates so don’t gauge your recovery with others.
@marionse25 @pennyp was asking after you but your link didn’t work so I though I’d add it here.
@belle1 yes I agree the slower the better with Herceptin for me. Not sure if I posted here before but one nurse injected a small amount then left it for 30 seconds to allow the local anaesthetic to work and then slowly over the full 5 minutes and I didn’t feel a thing. I have asked all nurses since to do this. The last nurse said yes that’s what I do but she rushed the injection and it was sore so I asked her to slow down.
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I hope it’s ok to join in here .
I was diagnosed with Grade 2 IDC and DCIS Er/PR- on 7th August .
I had another biopsy on another area and yesterday got the results that my cancer is actually Grade 3 er/pr- and HER2+ which has been a blow … I’m waiting for an appointment with the surgeon to discuss reconstruction and will be having a mastectomy followed by chemo and rads and I’ll be having Herceptin.
I’m out of my mind with worry about the whole lot as I have serious heart issues … it feels very surreal …,my youngest is 14 and I’m scared I’ll leave her without a mum… I’m desperate for the surgery though as it’s nearly a month since my formal diagnosis
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Welcome to the thread/group, @arty1 . You will find lots of support and guidance and hopefully a diversion from what is happening at times.
At this rate @salbert BCN will have to set up a separate group for us HER2+’s
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Thank you for being so caring!
Hi @pennyp
I had my Dmx and SNLB this afternoon. I was out late so they have kept me overnight I am posting from my hospital bed.
The op went well thay have removed 4 sentinel nodes and found no cancer what a relief! That means no clearance needed.
I have had extra painkillers but doing ok generally.
Re your question on herceptin, I have had 6/18 phesgosso far including one last Friday. I get a numbing cream about 45 min beforehand and it helps my needle phobia and the stinging. I had shooting pains on leg and hip on day 3 and 4 after the 5th first injections but not last time. And the injection site gets red on the day, with mild pain for a few hours.
My blood pressure gets quite low on the day but gets back to normal quickly. No other side effects
Not sure I have answered all your questions so just ahout if I can help with anything!
Take care
Marion
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Hi everyone
I’m so sorry for the radio silence but I have been camping quite literally on the side of a cliff with no signal which was lovely and frustrating in equal measures.
I have just got back to the camper van and seen the thread as we are now down in Appledore and I couldn’t go to bed without saying hi to you all and saying hello to @arty1 because I want you to know we have all been where you are right now. Being HER2+ is now one of the best breast cancers you can have because of Herceptin. If you get the chance, please read back over this thread because there is some really informative stuff on our type of cancer. You are in that really horrible phase of the journey when you are having to get your head around the news and know that you are going to have to go through treatment. But the treatment is excellent and you will get lots of advice on here and lots of support. If there is anything you are unsure about then just ask. If we can’t answer, then one of the Breast Cancer Now nurses will be able to help you. There is so much they can do so please don’t despair. I know it’s easier said than done, but everyone on this thread will tell you that they’ve been there and that they are ok. My son was 14 too when I got the news. He turned 15 in July. I have no intention of going anywhere and you aren’t either. I got the news in early November 2023. Now here I am campervanning with my hair growing back after chemo and I am sprouting eyebrows and eyelashes again. I know it’s hard to imagine now but you will be here too in 9 months time.
I will be back properly at the weekend when I will be able to keep up with all that is going on, on here.
Just on the tiredness issue, I’ve been doing really well in the daytimes walking miles and feeling really good but I have noticed that I just can’t drink alcohol and enjoy the evenings like I used to. I do hope that returns but if it doesn’t then it’s a small price to pay. It’s not like I ever have to look back and feel like I missed out because I really didn’t. Partying was something I was very talented at!
Love to you all
Salbert
Xx
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When I say camping on the edge of a cliff, I wanted to show you all how close to the edge of the cliff we literally were!!
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Thank you for that reassuring reply - I definitely feel like I’m just spinning wildly right now with no direction … it feels quite consuming - I’m terrified the chemo will put me into heart failure as my heart is already damaged …
The view is amazing ! That’s definitely going off grid !!
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Hi all,
I’ m so glad you are ok @marionse and the op went well, hope you were able to sleep in hospital. I came home later the same dsy after my op as i was done first on list, but then had to go back yesterday for dressing change ss was bleeding a bit. Good news that your sentinel nodes were clear and you didnt need axillary clearance, thay was a relief for me to. Guess we have to tske a day at a time for recovery, but we will get there. Very envious of @salbert and her csmpervan trip.
Hi @salbert soinds like you are having fab time perched on cliff, what wonderful scenery. Nice to be sble to get out walking, i’m looking forward to that. I had about 1/4 glass of wine the other day and it went strsight to my head, definitely be a lightweight now.
Hello @arty1 sorry you are in this club, but it really helps to have supportive people around. This forum has been amazingfor that. I agree with what @salbert said, it really is a bonus to have Her2 positive diagnosis as this type responds to treatment very well. My large tumour had complete response from chemo, even with only a few herceptin (Phesgo) injections. I dont know what the protocol is for people with heart conditions is, but i am sure they will keep a close eye on you.
Gentle hugs everyone.
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@pennyp I seem to be in the minority in that they are doing my mastectomy first …. I think it’s because the tumours are tiny but cover a large area , they feel chemo first won’t be beneficial … I was expecting chemo first .
I was diagnosed formally in 7th August then had a further biopsy , my appointment with the surgeon has come through for 10/9 but no surgery date yet … It’s made me feel more anxious as it’s outside their time frames for starting treatment , I just want them to get in with it !
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Hi yes I agree it was so quick and my leg was painful for 2 days after. She did say that was the main dose and they would be smaller next time. I’m still going to ask her to go slower. Xx
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@salbert Looks beautiful. Having cancer makes it even more special. We had a few days away in Shropshire and it was stunning. There are so many beautiful places in the U.K., even in the rain! But having a dog you are always prepared and go out in all weathers.
I remember walking during chemotherapy whatever the weather struggling some times to do a short 10 minutes walk but I was so grateful for the wind, rain ( it was winter) and to watch the clouds in the sky.
@arty1 i know it’s harder waiting for the operation and that is may be out of the timescales. I found a lump on 2 April 2023 and didn’t have my operation until 5 July 2023, 3 months seemed like a long time, more than the 62 days quoted in Wales but my boobs put a spanner in the works and an MRI found something in my left boob, which turned out to be another primary cancer. Yes one in each boob! I was scared that the cancer would grow and spread but was assured that they don’t grow that fast. The chemo started quickly after I had recovered from surgery on 14 September. I kept being told it’s better to know the full facts and do the treat right first time.
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Blimey that seems a long wait - what a horrible shock to find it was in the other breast too 
I know they are putting together the whole picture and the breast nurse said it’s really important that I chat about my options to the surgeon, she said it would be a disaster to just rush into a mastectomy . She reassured me that at this moment in time despite it being high grade they aren’t thinking that it’s spread … or will do between now and my surgery and that DCIS can sit around and do nothing for a long time … I feel a bit more reassured x
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Hello everyone, it’s been ages since I’ve been on here and it’s great to see all the new people and how everyone’s keeping up the chat. It’s a long haul in treatment for we Her2+ve folk and I don’t know how others feel but especially with hair, brows etc growing back, work, family and friends’ enthusiasm for enquiring after my wellbeing etc has definitely wained massively!
632 entries and still going strong! @salbert you definitely hit on a good topic and catch thread title. Is there a Forum record for the longest thread I wonder? Are you anywhere near it?
Anyway, on my journey, I‘m gearing up for this coming Friday being my final (18/18) Phesgo injection! At times I thought I’d never make it but here I am. I will miss the hospital team on the oncology outpatient ward. I’ve literally visited every 3 weeks since 15th July 2023. What I won’t be sorry to see the back of is the diarrhoea, it’s got cumulatively worse - more episodes on more days and less predictable about when in the cycle. Yes Imodium (loperamide) is great, but it really only acts like a bung and when the effect wears off, the cork pops and off I go again! I’ve talked to the BCNs etc but there’s little else anyone can do. Anyway, hopefully, like all the other stages of treatment it will soon be in the past.
By way of encouragement for those in the early stages of their journey. My tumour was found on routine mammogram. I didn’t find it. I just know that it wasn’t there 3 years previously and now it was and had spread to my lymph nodes. You can imagine how keen I was to get on with treatment and convinced I was riddled with cancer. But diagnosed on 26th May 23, I didn’t start any treatment until 15th July. Hindsight’s a wonderful thing and I now understand it’s the right thing to have all the tests and scans etc so that the best treatment plan for everybody’s individual situation is drawn up. I had to appreciate that if it’s taken up to 3 yrs to diagnose, a few extra weeks wasn’t going to make a mahusive difference. So I guess my message is like that of others, the wait is worrying, but things really do pick up and get better.
Then there’s letrozole. Oh my gosh, that’s taking some getting used to and definitely affected how I am, feel, ache, bend… the list goes on. But everyday I tell myself it’s helping me stay cancer free and I pop another one, hoping I can swim, walk, garden and generally plough through the SE’s.
Then again, like others have expressed it’s still not totally the end. There are a few more heart scans (one with the radioactive substance, then switch to ‘echos’), blood tests - my liver function is still not normal. The oncologist isn’t worried and my reading up suggests this too is a Phesgo effect, but my GP won’t have it and is putting me through their patient pathway as though I am an alcoholic!!! And I’m on the 6-monthly zolendronic acid infusions for another 5 doses. December will be one year after surgery mammogram. The car park at St James can look forward to seeing me plenty yet!
@salbert it’s been great to read about your successful surgery and I loved your poem.
Take care one and all. I’m still around and so grateful for you guys all still being here plus all the newer faces.
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