HER2+ and need some buddies

Totally fatigued after x15 radiotherapy.
It is exhausting. I finished on May 6th and I’m still knackered.
I get tired after Kadcyla too. Luckily the only side effects I get from it are fatigue and a bloody nose about 4-5 days after. I’m glad I have a central port so I don’t get bruised up from cannulation anymore.

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Hiya I’m just two days past 15x radio and still feel fatigued. It started hitting me during the third week. I’m just hoping it lifts soon not enjoying the fog x

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Hi all,

Hope everyone’s having a nice weekend. I’ve been keeping up with everyone’s posts over the last week or so.

@salbert love the sound of your tattoo and the new pub quiz name suggestion :rofl:

@jeml looking fab on your holidays!!

@arty1 so relieved to hear that you ‘just’ had a cyst! That really must’ve been an awful worry.

The topic of 15 radiotherapy sessions and side effects has come at a good time for me to read - I’m having my planning CT scans tomorrow and an MRI on Wednesday to start my 15 sessions plus 3-5 sessions of SABR to the (are we allowed to swear?) ‘beggar’ on my spine. Unfortunately they think I do have active disease in the skin around my mastectomy scar too - it’s all red like the boob was since December. I get the feeling I may have inflammatory BC because it fits the description with the skin but no one has said that to me. I’m not sure it makes a difference for treatment though. I need to remember to ask next time I see her just for my own knowledge.

They’ve continued me on Phesgo for now - I’m still a little worried I’ve not been changed to Kadcyla given the residual disease and met, but the oncologist I saw this week said she wouldn’t do the SABR while on Kadcyla and that they don’t want to move through the treatment options too quickly.

I know it’s still a month away but been thinking about the Cancer in Common event in London in July. Are others going? Would anyone like to meet beforehand to arrive together? I’m a bit anxious going places on my own where I don’t know anyone so this is totally out of my comfort zone!

My little girl turned 2 on Friday, we’ve had a busy weekend and I’m exhausted. Sharing a little photo of the cake I made her for your amusement, she loves Old MacDonald’s farm. (I’m a keen baker but never really made novelty/themed cakes before, my icing work isn’t great hahaha. Disclaimer - I bought the animals)

Sending hugs to everyone!

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@shannon27 - wow you look absolutely amazing ! The wig is fantastic and I’m a teeny bit envious of your lovely perky looking boobs !
I’m gutted I couldn’t have a reconstruction - My hospital don’t do diep and I was told because I’d been a recent smoker that an implant would fail… I could have had the other reduced and lifted up before it reaches my ankles :rofl:

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Hi
Lots of sudo cream also use aveeno for the shower. Worse thing ever Iv suffered down below sores, still suffering now and only on trastuzumab, I finished chem in January xx

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Happy birthday to your little one, the cake looks amazing, I live close to London in Slough but unfortunately my last chemo is planned on the 10th of July even I am trying to stop it as docetaxol is wiping me out.

Aw thank you! Just over 3 weeks out and feel pretty good over all, sore rib today and a little tired but have had some pain killers and will get a good rest tonight :heart:

How are you doing xxx

Homemade cakes are the best especially novelty ones because they are made with love. I used to make loads for my children when they were little.

:smiling_face_with_three_hearts:

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Germoline and cream from the gp that you insert helped my cuts and sore rear.
Just a quick update. I have 6 more Phesgo to go. I have been offered oral biphosphonates from the gp by my onc. I could have infusions for 5 yrs privately but not sure how long I will be working for and my insurance is through work so thought it best to go for the oral ones. I have a CT in July to check on the lung nodules and 8mm lymph node nr my SCF/collarbone and my annual mammogram in August with my consultant. Hoping the biphosphonates (Zoledronic acid) will be manageable. My onc said that they aren’t needed for Osteopenia but may benefit re reducing metastatic bone cancer. I thought I should take them as not had Kadcyla even though I had some residual disease although I’m told I had a good response to chemo (85-90%)

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Hello lovelies

I’m back in the office today but have just stopped for a lunch break consisting of last night’s curry leftovers. It’s definitely better the next day but that was blooming hot for a Ceylon. I strongly suspect I shall be suffering from our common complaint, larva bum, in the not too distant future. Self-inflicted though so I shan’t expect any sympathy.

@mrsjelly - The discarding of your headwear to reveal a bald pate reminded me of a similar situation when I went to a pub with my friends at the same stage as you are now. The waitress took our order and I had shoulder length blonde hair. She returned with our food and I had absolutely none. Her double take was priceless.

I also had a bad reaction to the latest Covid jab and felt rough all the next day. That hasn’t happened before. In terms of Phesgo and surgery, I had no breaks at all. I had a Phesgo injection on 1st August, a mastectomy on 7th August and then another Phesgo on 22nd August, so the usual 3 weeks between doses. I have enjoyed my head feeling clear as my general wellness and energy levels have improved. However, I think this may be due to stopping funnelling wine down my neck of an evening. It’s so good to feel good. I hope this happens for you soon. My husband and I went to the New Forest for the New Year. You can’t beat a bit of New Forest therapy to celebrate getting through another stage of treatment.

@gromit12 - I did suspect that my hair was beyond redemption! :smile: Great that you and kartoffel are almost through Kadcyla but no follow-up does seem odd.

@loubeeloo21 - My dear, you are most welcome here. Primarily, it’s a HER2+ forum and I think any conversation about it is valid and helpful. We are also super friendly so it’s nice to just jump on for a natter.

@jayveebee that’s a great study to share with us. Thank you. So sorry you had to get back on that hamster wheel of torment while your spots were checked out and relieved to hear that you have been able to climb off it again. Glad you had some cute doctor eye candy to alleviate it a little.

@arty1 - It never rains but it pours. Literally, by the sounds of it. Get that iron down your neck. The crap has to end at some point. :pray:t4::crossed_fingers:t3:

@sn25 - With the Herceptin (Phesgo) alone, the only side effect I got was diarrhoea. Aside from that it was life as normal, just so long as I kept a pack of loperamide with me at all times!

@sassy3 - Germoloids. Oh how I love that cream. Its soothing anaesthetic properties make me want to make it the subject of a love poem of gratitude. Love how many of us have given you suggestions for larva bum relief.

@shannon27 - Looking absolutely fantastic and what great news! So fabulous. This is the thing. There IS lots of good news and much to celebrate in the midst of this sh*tstorm we all found ourselves within. It’s so important to share the good news to temper the bad. :partying_face:

@purple_rain I had no hair loss on Phesgo alone but like @naughty_boob, mine is slow-growing. The tiredness definitely improves. I finished radiotherapy in October and Phesgo in April. Here we are in June and I am back to my 11pm bedtime and my energy levels are good again.

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@kartoffel thanks for the Matt Haig recommendation. Definitely sounds like a good read. It may be a cliche but my outlook on life has most decidedly changed and for that I am grateful. The things that used to bug me now seem so futile and I am genuinely grateful for every day.

@Linda_Corinne Good news on your chemo response.

Finally @sooz1 - Thanks for your update. You are absolutely allowed to swear about that ‘beggar’. It sounds like they are going to throw all the treatment options at you but I guess we have to trust them with regard to the order they do it in… And YES! We can meet before the Cancer in Common Event. It starts at 2pm so we can meet about 1:45? Let’s DM. I’ll be the one waving madly in a super sparkly outfit. (Give me an inch…) It’s going to be fab to meet people from this forum. I’m so looking forward to it. Your cake is brilliant. I am in awe of people who can craft anything. That gene passed me by.

Dadsitting again tonight so my Mum can go to Knit and Natter with the WI. Mum swears it isn’t a Stitch and Bitch but I don’t believe her!

Salbert
xx

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If those of you going to the Cancer in Common event in London want, I can set up a WhatsApp group chat for us to coordinate? If you’re interested, dm me your number.

If anyone hasn’t signed up and wants to join, more info here:

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Thank you, how are yous doing ?

Yes its great news i need to speak with the breast care nurse, so i can note it all down cause i didnt get a chance to being at the pictures. But from what i gather she said it was almost complete response i think she said 1mm was left bit sure but im if it was dcis or idc cause ive just to to herceptin jags until October i just thought i would be foing kadcyla but it must not of been invasive left in the tissue xx

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@kartoffel - I wish I could do this but I’m working all day :sob:

@sooz1 - That cake is fantastic ! I bet your little girl was thrilled x
Fingers crossed that the sabr gets in there and zaps that beastie once and for all !
The redness round your mastectomy could be something else ? When did you have your surgery ?

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Good idea re the WhatsApp group for the CinC Event @kartoffel. You have my number so if it happens then do add me, please.

@shannon27 I’m doing great, thanks. I’m still milking the advice not to lift heavy shopping, do vigorous exercise or hoover for all its worth but in all honesty I’m pretty much feeling back to normal and new posh boobs are healing well. I just went to fetch the post and the girls at reception told me that when I have my nipple tassel tattoo done, they are going to call me Tassel Tits! I rather like that moniker too. I’m spoilt for choice!

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@arty1 my surgery was 24th April. The oncologist had a feel of it last week and she said it felt ‘nodular’ which I took as she suspected it was cancer. I have a patch between the scar and my collar bone that the surgeon biopsied during surgery which was cancerous, but he couldn’t remove it. So I’m suspicious that the other patches are too. That’s why they brought my surgery forward I was only 2 weeks post chemo when he did it because he was so concerned about the skin involvement. Sigh. Hopefully the radiotherapy does its job - she said she’s going to bolus the whole area.

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Aw brilliant yes im the same milking it if i need a rest😂 and not doing anything to hard! Enjoying the rest as well , starting ny new treatment of trastuzumab see what thats like xx

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How are you @sooz1? X

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Hello everyone,

Hope you’re all getting some sunshine over the next few days! We’re going away to Dorset for a long weekend this weekend before my radiotherapy starts next week and I can’t wait, haven’t really left my local area since October!!

Is anyone on denosumab here? My oncologist wants to discuss it next week, anything I should know/ask about it?!

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@sooz1 You absolutely need and deserve a break, have a great time. Im sure some collective wisdom from our team of expert warriors will come along soon to address your query.

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