@carrie5 you are fabulous!!! 
Xxx
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Goodness me, so many posts since I last posted. Lots of reading.
@arty1 Iām really sorry to hear about your daughter. I had two miscarriages between my two children hence a nearly 4 year gap. It was devastating at the time. I found myself seeing pregnant women everywhere and those friends who has had children around the same time as my son were pregnant. It was a difficult time. Then on top of that youāve had a car accident. That must have shaken you up. We had a close call last week when three deer shot out of a wooded area across the road in front of the car in front of us. Husband slammed on the brakes. My seatbelt thankfully didnāt hurt my new appendages and the deer all got crossed the road safely. Hope you get your car sorted and that insurance premiums donāt sky rocket.
Echocardiograms. How soon after surgery did you have one? I had double mastectomy and reconstruction three weeks ago tomorrow. I still have dressings in-situ. They are tender and sore along the incisions at the sides and raising my arms is uncomfortable as is laying on my side. I cancelled the appointment that was early last week as that was definitely too soon but Iām wondering if this week is too soon too. I would welcome your excellent guidance!
Thank you
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Has anyone changed to Herceptin from Phesgo due to upset stomach? I had to cancel my plans today due to this!
Hello all
@jayveebee Glad you met a warmer surgeon this time around. Makes all the difference. Five years of scanxiety mid-December is a bit tough but I try to tell myself that whilst this is our lot, itās better that we know the state of our insides compared to all the people walking around without a clue. Iām most envious of iced coffee and sea swimming during this glorious summer.
@leelee1 - Many of us know that sexy post surgery look well. 
You have my absolute sympathy. I not only sported that look myself on multiple occasions but I also suffered from numb underarm and the backed up bum/ explosive ending combo. What is it we say about the gift that keeps on givingā¦ 8 laxido sachets!!! Goodnessā¦good luck with that! 
@carrie5 - You have just made me laugh out loud at you driving a tank. How I love you. Totally brilliant!
@shannon27 - Hmmmā¦I guess each trust is different. I get annual scans but then I only had a single mastectomy and lymph node involvement. Be interesting to hear what others have to say on this.
@mrsjelly I had an ECG in November which was 3 months after my mastectomy because my Cardiac Rest MUGA scan had shown a drop in my LVEF. The closest appointment I had to surgery where I had to raise arms etc, was my radiotherapy planning appointment which was 5 and a half weeks afterwards, if thatās any help.
@Linda_Corinne I didnāt switch from Herceptin to Phesgo, as I had Phesgo all along but it sure as hell upset my stomach. I swear my water bill increased while I was on it due to the excessive toilet flushing! Sorry to hear that itās affected your plans for today. Loperamide is our friend.
My mother has Stitch ānā Bitch this evening so my Dad wants to sing again while she is out. He has also taken to roaring when he passes a stool. My brother refers to it as the āpoo roarā. I do believe his neighbour avoided us when I was decanting them from the car on Friday which is entirely explicable. āWhen I am Old I Shall Wear Purpleā has nothing on my father!
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@hasnae87 All the luck in the world for tomorrow. Youāll be just fine and weāll see you on the other side. Much love. XX
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So first post diagnosis/ surgery mammogram this morning. Scan-xiety was through the roof over the weekend. It wasnāt as painful as I expected despite the Lymphoedema. Results in 2-3 weeks (more waiting 
), earlier news will not be good!
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Hello Her2+ friends! Iām new here - just started chemo on 4 July, having been diagnosed on 19 June so Iām still in the ārabbit in the headlightsā phase of things. I have invasive ductal carcinoma, stage 2 grade 3, ER/PR- Her2+. Iām having 3xEC followed by 3xDocetaxal + Phesgo. Then surgery (lumpectomy/mastectomy depending on extent of tumour shrinkage, and on outcome of genetic testing). Then the oncologist mentioned 12 months of further Phesgo.
So glad to have found this thread as I have so many questions about the post-surgery Pheso and wonder if any of you can share your experiences. While Iāve somewhat parked it in the āfuture me problemā category of this whole shitshow, I am conscious that I need to understand a bit more about what to expect, so that I can plan what to do about work/sick leave throughout this whole process. Iām eligible for 6 months sick pay in any 12 month rolling period and am not sure whether to try to work through my good weeks during these next few months of chemo in order to eke that out. Iām the major breadwinner in our family - itās my income that pays most of the bills.
My instinct is telling me NOT to work through this phase of chemo that Iām going through at the moment - my job is fairly stressful and I feel like I want to give the treatment the very best of chance of shrinking the tumours as much as possible before surgery. And then to have time to recover from surgery before I phase back up to full time. But if work is going to be tricky once Iām on the follow-up Phesgo, I might need to rethink things.
I guess what Iām trying to understand is how easy it is to work full time while undergoing the post-surgery Phesgo. If Iāve understood correctly it is still a form of chemotherapy even though itās injected, and that it does lower immunity levels, but that women generally tolerate it reasonably well. Have I got that right (bearing in mind of course that everyone is different)?
Also, whatās the hair loss situation on Phesgo - does your hair start growing back while youāre on it, or only once all the treatment has been given?
Sorry for the essayā¦ chemo brain seems to have robbed me of the ability of communicating succinctly!
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@hedgehog i thought i would be able to work through my treatment but i couldnt, i started my treatment last September and im still on sick leave. Ive done chemo 2 surgeries and finished radiotherapy 6 weeks ago, i am on kadcyla for 14 cycles of which i have had 5 which has not been too bad. I thought i would get back to work next month but my body has other ideas, im tired, iāve no energy and started getting heartburn and indigestion. Im not rushing back to work as i work in a supermarket, iāll wait until i have more energy. You cannot put a timeline on when youāll be ready to go back to work x
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Hi @hedgehog so pleased you have joined this merry bunch.
I think work depends on your actual job and where you are based eg home, office , school. For myself I worked in a primary school covering multiple classes and mixing with that many children and staff from different families was a no no as far as infection risk especially during chemo. On many chemo starters threads, lots of people do work when they can, especially on their good week ( usually 10-14 days after infusion)if on a 3 weekly cycle. I had weekly & only had a couple days. Herceptin and Phesgo can lower your white blood count which fights infection but not as much as chemo, but itās also not without some side effects. Many ladies on this thread worked through this treatment successfully and others do with Kadcyla (chemo/herceptin) for residual cancer. Others, like me canāt. Phesgo is a targeted treatment that blocks the HER2 receptors.
Another factor is your age, health and fitness as you enter treatment. There will be days when you canāt do much at all and you have to allow this to happen while your body deals with chemo. It not only kills the bad cells but also the good. Planning ahead and getting help organised in advance really helps. Specifically ask for what you need. Many chemo starters group have agreed that specific requested for help is so much better, than when people ask you āwhat you needā when you are at your lowest and you do t have the energy to even think what you need.
Iām sure others will come on and comment. But I would highly recommend reading the thread as there is so much useful information shared about all of our experiences.
As far as statutory sick pay, if this finishes you can claim for Employment and Support Allowance. (ESA). During your treatment you can claim for Personal Independence Payment (PIP), as you are now disabled under the Equality Act 2010. Under this act you can ask for reasonable adjustments at work, such as working on your good days. Although the law says employers āshouldā they donāt have to, but you can challenge them and find out why they wonāt. Great charity that can help https://workingwithcancer.co.uk/
As well as MacMillan, Citizens Advice and Maggieās charity.
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My first echo was about 41 days aftet my surgery. It wasnāt very comfortable if memory serves. My drain was out, dressings off but I was still tender.
X3 weeks seems very soon, every day makes a big difference after surgery.
Maybe talk to a BC nurse to see if thereās any concerns or if thereās anything they can do to help in the meantime.
Good luck and sending hugs to @hasnae87, we look forward to you beginning to get your body back and hopefully you feeling better after your surgery. Youāre very strong, youāve already put up with horrible toxic chemo while being a wonderful mum. You can do this! 
@hedgehog very much agree with everything @naughty_boob said. Thereās so many factors when it comes to work.
I work in a GP surgery so sick people every day. Even though my managers tried to isolate me and weād set up for me to work through my chemo I learnt immediately after my first cycle that it completely wiped me out. I only had phesgo I think once after surgery (and before radiotherapy) and I think I may have been able to return if Iād just been on the phesgo. I got put on Kadcyla anyway so it ended up being moot.
Itās coming up to almost a whole year of not working, I return on Wednesday (phasing it so only starting for a couple of hours twice a week and Iāll build on that hopefully), although itās a day immediately after a Kadcyla dose so Iām jumping in the deep end. Iām not sure Iām doing the right thing but my sick pay finishes tomorrow and it probably is time (plus my house needs lots of renovations, roof started crumbling, I need my old salary).
My managers suggested several options (including WFH) so maybe thereās options, hopefully, at your workplace too.
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Hi! I had 4 x EC and 3 x Docetaxel then a lumpectomy. After the chemo was finished I had 4 phesgos on their own and I felt much better than during chemo. Hair grows on phesgo too. I then had radiotherapy and got switched to Kadcyla as I had residual cancer following original chemo (Kadcyla is a targetted chemo and I have had 11 now) but went back to work after 3 of those as Iām doing well on it. With my job, I also wouldāve found it difficult to work during my main chemo last year. I think it depends on job, but also, I was in and out of hospital randomly with infections and had to take a lot of tablets every day post infusion for a few days and I can remember thinking that just wouldnāt have worked for me if I was still working. I do shift work and infection risk is higher so my oncology team basically said working was a no go for me too (plus I canāt work from home).
By being off I was able to focus on looking after myself, give myself some time to exercise each day in some way and generally process what was going on. I also think that by taking care of myself during chemo it helped my recovery at the other end. If I was to give you any advice, it would be to take the time off now rather than later if you have to choose, as the chemo phase for me was the phase where I needed to focus on myself and my health most.
I also donāt want to worry you in any way, but I was told 12 months of phesgo was worst case scenario after surgery (as it was either 6 or 12 months id get). There was another option if you have residual cancer, which is Kadcyla. I was planning my work and life around phesgo so was caught off guard when Kadcyla came up much later down the line. Everyoneās treatment plan is different but itās worth checking with your oncologist next time you see them what the treatment plan options are after your surgery dependant on your response to chemo (so that you have all of the information early and up front to plan either way). Like I said though, Iām doing well on Kadcyla and also done well on phesgo on its own
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Well done, all my hair fell out after first chemo session I just honestly didnāt care about it knowing it would grow back.i just think itās wasnāt a priority weither I had hair or not my cancer was top of my list to get better. But unfortunately I canāt have any more chemo as I was extremely ill after first chemo session. So consultant is making another plan for spent 5 weeks in hospital for doctors to put me back together xā:heart:
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@belle1 I wonder why so many oncologists donāt mention the possibility of Kadcyla until they want to switch you to it from Phesgo. Especially with your team mentioning the worst case scenario being 12 months of Phesgo. Itās not like itās some huge deviation from the standard pathway and most people Iāve spoken to would rather have known it was a possibility from the start and NOT needed it then having the rug pulled out from under them after surgery.
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Definitely! I specifically asked and wanted to know for my return to work and also for rescheduling a holiday Iād had planned - a Maldives holiday, so like a once in a lifetime one for us with the cost. I was raging they told me it would be fine to reschedule to Jan (as I was rescheduling it to about when phesgo would almost be finished) as they said they could just give me an extra week between phesgos to go if I did have to get it for the year. I had to reschedule it again as I canāt go there whilst on Kadcyla but fortunately I didnāt lose money (which I was worried about by having to do it more than once - they waived the fees when my travel agent got in touch to explain). I also had kept telling my work what I was told and the expectations were there that I was going back earlier than what I eventually could.
Transparency would go a long way as itās the practical things you need to know for and Iād rather be able to have it in my head and not be told once I thought I didnāt have any more chemo to go 
my BCNs seem to think itās that the oncologists at my hospital donāt like to dump it all on people at once as itās info overload 
I had said to them thatās all well and good but it should be patient led and Iāve wanted all the info I can get from the start. Sorry that turned into a bit of a rant 
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Preaching to the choir here. Especially if they tell you something is āworst case scenarioā - itās like, give me the actual worst case scenario instead of drip feeding me what you think I can handle! Itās one of the few things Iāve given the hospital strong feedback on. That and cold capping/docetaxel are things I think they need to be SUPER transparent up front so that people can make informed decisions.
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Thank you @naughty_boob @belle1 @sez @caz591 for your replies, thatās really helpful.
Do I take it that Kadcyla is more difficult to tolerate than Phesgo?
Iāve made a note to specifically ask my oncologist about it.
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@belle1 Like @kartoffel I do not get this not warning folk of the potential for Kadcyla. It really knocked me for six when I got the surgery results to be told I had clear margins but I then had 14 rounds of Kadcyla! It was one of my lowest days and could have been prevented. Why canāt they just give us a flow chart at the start that explains all options. I had to postpone so much which I wouldnāt have to have done if Iād been properly informed in the first place! Rant over!
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@hedgehog I actually tolerated Kadcyla ok but it was the fact it was back to more chemo, I didnāt have a PICC line or port so got quite stressed about whether my veins would hold up- they did. But it meant more bloods, more echocardiogram as my heart function dropped, and I was expecting none of it xx
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I canāt speak for others but I find Kadcyla a doddle. I have a port in now and it takes 30mins (plus 10mins of flushing), my worst side effects are fatigue and sometimes a bloody nose. Phesgo meant I had a sore thigh plus the other side effects I get from Kadcyla plus more likely to get neuropathy. I prefer Kadcyla any day.
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Ah I see - phesgo goes in the thigh whereas kadcyla is an infusion. Thank you, really helpful, Iāve added a little bit more knowledge to my arsenal today!
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