I’m so so so happy for you. It is rubbish that you have a UTI but it’s also brilliant news that you know what the problem is and you’ll be able to move forward with your op soon. Sending you lots of good and happy vibes. Xx
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Hey ya @sshini93 - happy to read this news. I too, had / have inflammatory breast cancer & the treatment plan is brutal.
Have you been in touch with the ibc network UK? Ideally the radiotherapy pathway needs to be slightly faster than other pathways & i had to push for this a bit.
X
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Hello ladies… it’s been a little while since I last posted, but I’ve been keeping tabs on all your updates. Sending everyone going through a tough time, lots of positive vibes and for those of you that are thriving, bravo!
I finished chemo at the beginning of September and have just completed 5 fractions of radiotherapy. Today I begin my journey on Letrozole, which I’m a little apprehensive about, but I’m going to stay positive and hope that I avoid
any nasty side effects.
Tomorrow I will have Phesgo 8 of 18… and this is the reason why I’m reaching out. From the very first injection, I suffered with itchy forearms and it’s got progressively worse. At first I thought it was a chemo side effect, but after doing a bit of research it seems that it may be the Phesgo. I’ve been prescribed Fexofenadine Hydrochloride, but it has had little effect. I’ve also tried E45 cream, but that hasn’t helped either. Ice packs are the only things that save me from scratching until I draw blood.
I’ve spoken to my oncologist and my BCN, but neither of them have any experience of patients complaining of itchy forearms. I found a couple of posts on here and on CRUK that seem to point the finger at Phesgo, but there’s not much on how to remedy it. One lady said the she went onto the separate trastuzumab/ pertuzumab infusions, but I don’t know whether that resolved the itching.
Have any of you ladies heard of or suffered with the same? Any and all advice very welcome.
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Hiiii 
I hope you have recovered well from all those treatments. Definitely chemo side of mums definitely knocked her but thank god it done its magic . I believe what I have been told by the surgeon is that she will have additional chemo before radio but I could be wrong maybe radio first. He said something with additional treatment before radiotherapy. Will find out on Wednesday and update u 
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Just about in one piece i think. 
I think the ideal for radio is 4-6 weeks post surgery, but I managed to negotitate 8-9 with a bit of a push & some support from the ibc network though the oncologist wasn’t the happiest with me.
Hope it all goes as well as possible. X
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Awww I’m so glad and hopefully all treatments are done for u will update u on Wednesday what the plan is for my mum 
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Just a quick message but I’ve seen a few people mention on a Facebook forum that they’ve had itchy arms on herceptin. Someone tried piriton and that seemed to help. Someone else tried steroids before every round which so helped.
X
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@sshini93 this is really good news. Thank you for letting us know and please tell your mum to slap a bench with you. We are happy to hear this.
Hello @maria1970 - I’ve never come across this itchy forearms side effect from Phesgo before but ain’t this forum great that immediately @cass2 can point you in the direction of people who have and what they’ve done about it. Hopefully some more people may come forward with some tips.
I had my 2 year diagnosis anniversary 2 days ago and today I have been able to put my hair in a ponytail for the first time since losing it all. I was so happy that I came in and announced it to my colleagues and then again every time another one walked through the door into the office. It’s not that impressive but by Jove, it’s made me gleeful!
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My one year ‘D day’ anniversary coming up. Will have to think of something daft to do to celebrate not being in that rabbit in headlights place now. Just had a ‘stand and wait’ consultant review ( no chairs left in waiting area!) but it went fine. @salbert Take your highs, including pony tails, wherever, whenever and as often as you like! Good wishes to all getting surgery/ feedback eyc this week.
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I thought it was only me!!! I am really suffering with itchy backs of hands and forearms! I finished chemo in August, surgery in September but just after that the itching started. It has got so bad that I am drawing blood with scratching! I have made oncology aware but they haven’t commented, my GP prescribed Fexofenadine and menthol aqueous, didn’t work! Then Prednisolone, no change now trying Amitriptyline (for nerve pain) and although it helps me sleep better, like you, only ice packs help the itching! I am on phesgo … sorry for the long post
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Congratulations on the pony tail 
I bet it felt good. I don’t blame you for telling everyone, it’s a big achievement. How were you on your anniversary? Ok I hope. It can be a difficult time.
@carrie5 looking forward to hearing about your plan for your D day. What could it be? Glad your review went well even if you had to stand.
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Hi Maria! I don’t have itchy forearms but the back of my neck and shoulders have been mad itchy for months now - I have been blaming Denosumab as it started a few days after my first injection… but maybe it’s the phesgo. I’ve told my oncology team and they suggested it could be the phesgo too but haven’t been massively bothered about it. Same as you, nothing seems helps. I’ve had antihistamines, been using all sorts of creams. Saw the GP and pretty sure he thought I was mad because there’s nothing to see on the skin it’s just so itchy / stingy.
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Hi again,
I didn’t feel able to ask my oncologist about the spots on my liver last Monday as it was a quick 15 minute phone call mid chemo 
I’ve read my latest MDT summary again. I don’t know what’s wrong with me, I keep missing things or misunderstanding them.
Under the Conclusion of the CT report, the exact phrasing is: “No definite CT evidence of metastasis. Two tiny hypodensities in the right lobe of the liver. These may represent simple cysts. An ultrasound correlation may be considered.”
Are we right to interpret this has saying they aren’t ruling out liver mets? Nothing has been said about a liver ultrasound…should I chase that? In my clinic letter for Monday’s phone call, it says the CT scan is for my liver and a pancreatic cyst.
I will be having the repeat CT in about 4 weeks.
Well, who knew that the itching thing was yet another side effect. I’m glad it has been shared here so that others will know what it is and that there may or may not be ways of dealing with it. At the very least folks will know they are not imagining it and can rule out a change of washing detergent.
@carrie5 and @naughty_boob I went to Dance Fitness last night where I have the dubious pleasure of getting to watch my dancing for a whole hour in the full length studio mirrors. This does not normally induce any good feelings for various reasons i.e. age, girth, poor dancing etc., but last night these paled in comparison to my ponytail! I even found myself comparing it to someone else’s who also had a rather short one and it felt like reclaiming part of me again. It may sound odd but I didn’t register my D Day 2 year anniversary until 2 days after it had passed which I take to be a good thing. I’m glad it doesn’t dominate my thoughts now. I will chalk this up as another minor victory.
@dilly I was in the same boat as you when they had to do a follow up on my lungs for the 2 sub-pleural nodules they found. They couldn’t rule out metastasis until the CT repeat scan 3 months later. However, my consultant told me that they were so tiny that chemo would mop them up if they were metastases. This made me feel heaps better and then they turned out to be benign. The waiting is agony but take heart from the word ‘tiny’. Can you ask for a call with your team in the meantime to get some clarity? Or call our BCN nurses on 0808 800 6000 to run by the wording in your CT report. They need to do all these thorough tests to know exactly what they are dealing with and tailor your treatment plan but it’s very tough to be the subject of it all. Hang in there. X
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Thank you @salbert x
I’m at chemo today and had a good chat with the lovely chemo nurse, which has made me feel much better. I mean, it is still what it is, but talking it through and feeling really listened to has made a huge difference.
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@salbert That is very exciting indeed! Shout away friend. I’ve been getting trims and now the gaps from chemo hair loss are finally almost filled out. My hairdresser said the layering looks intentional now instead of chunks missing because of chemo 
@carrie5 Definitely feeling relief as the primary emotion here. I had the whole weekend to think about the what ifs so it was a relief to hear my surgeon lead with “no sign of metastatic disease” but at the same time it is disappointing to have the finish line moved yet again. I’m coming up on my 2 year cancer-versary in January, so it would have been nice to have all the major stuff done by then. Any ideas what you’re going to do for your cancer-versary? I can’t think of anything to top what you’ve already done! 
Maybe a spa day would be crazy for you since it would be so out of the ordinary. When I’ve planned crazy activities in the past, it usually involved traveling somewhere off the beaten path. I spent my 30th bday at Chernobyl - maybe not a suggestion for right now, but is there anywhere you’ve always wanted to travel?
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Reminds me of my guilty pleasure watching Real Housewives of Beverley Hills and Kyle swinging her pony tail.
Thank you! I saw the oncologist today and she examined me and felt several swollen lymph nodes in my neck. She’s ordered a CT scan and bloods to check tumour markers - she’s booked me in for results in 3 weeks. Going to be a long 3 weeks. I’m trying to practice what I preach and not let worry take hold. I’m going to keep busy and focus on what I know for a fact, rather than speculate and let my fears and anxiety run wild. That’s the plan anyway. I did have the flu vaccine in October and wondering whether that can cause swollen lymph nodes, but I did have it in the opposite side so not sure that would explain in. Anyway, it’s a waiting game now but I’m hoping and praying hard for good news. I hope you enjoyed New York! X
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Hi all, this is my first post, so I hope it Is in the right place 
.
I was diagnosed with HER2+ Er+ Pr+ lobular in January this year. I’ve completed chemotherapy and had my surgery in August. My radiotherapy has been delayed due to several post surgery infections including an abscess which burst and is taking its sweet time to heal.
I am a little concerned that I haven’t had any Phesgo injections since my last chemo on 4th July. I am wondering if anyone else has experienced such a long delay with there Phesgo injections? It has been 4 months so far. I haven’t seen my oncologist since June. I called their secretary and they said my oncologist wants to see me after I have completed radiotherapy - then she will discuss my adjuvant therapy. Any advice, reassurance or suggestions would be appreciated.
Thank you,
Vicky
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Good morning everyone 
Just little update regarding mum‘s next treatment. So the oncologist said she will have 15 session of radiotherapy from Monday to Friday. But before that she will have her her2 drug, 3 weekly cycle of trastuzumsb emtansine for the next 8 months. She will have heart checked and also planning CT scan done very soon. The oncologist said she will have one cycle of TE before she starts radiotherapy, once that’s completed back to continuation of TE drug. After that, she will have drugs to strengthen bones
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