Hi again @louc
Forgot to say I had chemo first, and started phesgo before my DMX, so a bit different.
Marion x
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Hi @louc
Welcome to the group, so glad you chose to join. I had Herceptin but Iām sure some others will comment on Phesgo (Herceptin and Perjeta).
I had weekly Paclitaxel and found that the weeks with Herceptin increased my side effects. I then continued for 8 months with Herceptin alone, having several days feeling flu like and upset tummy. Paclitaxel gave me 
so could that be your tummy ache, there are many of us that survived on loperamide (Imodium).
@arty1 Sorry you are feeling very fatigued, having an operation with anaesthetic can really upset your system. Be kind to yourself it can take weeks to fully recover. I had a bi lateral lumpectomy so had to sleep on my back only and just felt rough for a couple of weeks. I slept when I needed to, read a book, watched a film or tv. To be honest I think Iāve been fatigued since my operation last July, hoping it will get better with no longer having Herceptin, but who knows the Letrozole might also impact my energy.
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Yes! Iām three weeks down the line and just starting to get my energy back. I think feeling down in the dumps is also natural. Itās a huge amount to go through.
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Hi
I am very interested in this also. I begin Herceptin when I switch to docetaxel on 14 October. My chemo nurse has told me that I will have the injection before the infusion, and that itās about 5 minutes. They will monitor me for an hour then if all is okay, they will start the docetaxel. If all goes well it will be the same for my next 2 cycles. What I am thinking of is what monitoring did you get after chemo was done, as I have to have about 17 Herceptin jabs in total, 3 weeks apart. Do they still check blood counts, neutrophils, side effects? What advice were you given about suppressed immunity?
Sorry to be so nosey 
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Hello everyone!
Can anyone tell me when they were advised to use scar cream/silicone massage for their mastectomy scars?
Also what did they use? Any recommended from health professionals or otherwise.
I was wondering about scar cream or silicone.
My surgeon said not to use for 6 weeks and not during radiotherapy.
Thanks Xx
@bigpickle no blood checks with Herceptin. I had most of mine after chemo with a private company called Sciencus paid for by the NHS as it was cheaper (no VAT paid if administered in your own home). Who would have thought private was cheaper?
Each time they visit they took my temperature and blood pressure and check how I have been. I completed 18 cycles of Herceptin and they could be quite painful, the drug has to be kept cold and is taken out of fridge/cooling 30 minutes before itās injected. One of the Sciencus nurses injected a small amount, then waited 30 seconds before slowly injecting for the full 5 minutes. It was the least painful way I had received the injection. I made sure to ask each nurse after that to do the same.
I have Zolendronic acid/Zometa infusions so have bloods before that every 6 months and the GP does bloods for cholesterol once a year due to the Letrozole.
As far as low immunity, itās not as low as chemo but it can reduce your white blood count that fights infection, so I carried on being careful with things I ate and made sure meat is thoroughly cooked. I bought a meat thermometer, which is invaluable. I continue to wash fruit and vegetables. I was very careful for 3/4 months after chemo as it was still winter but over the warmer spring and summer became a bit more relaxed. Some oncology staff say you can be ānormalā but I decided to be more cautious and I didnāt catch any bugs. If you do and have a temperature they will not do the injection.
@chakakhan i had a bilateral lumpectomy and was told I could massage cream or oils into the scars once they were healed. It took 3/4 weeks. Penny Brohn charity have a scar workshop with Kate Oldham who is a cancer rehab specialist and had cancer herself. She recommends rosehip oil. I used Bio Oil and at my radiotherapy, which was 6 months after the surgery, I was to,d my scar had healed really well. You can get a product similar to Bio oil called ReGen oil and itās much cheaper as recommended by Cancer Hair Care charity. The radiology team said to use creams you were used to so that you would not get allergic reaction and not on the morning of your treatment. Some people recommend E45 as its fragrance free. I used Radiaderm R1 and R2 for my radiotherapy as I won them from Dr Liz OāRiordanās Instagram. It would really well with no pink or redness on the skin.
Hope this helps
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Hi @chakakhan
My surgeon told me to start when he was happy with my scars, which was 2 weeks after surgery. I am using cicalfate cream from Avene. My BCN recommended it.
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Really helpful, thanks very much. 
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@flojo - They donāt really prepare you for it do they, I think I was running on adrenaline before hand and Iāve crashed and burned , glad you are finally starting to recover though x
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@naughty_boob Iām a dreadful patient , too eager to get back to normal , I got my husband to drive me to Dunelm two days post surgery so itās no wonder I crashed ,
since then . Iāve been taking it easy .
Sleeping on your back is so hard isnāt it 
how long did you have to do that ? Iām fed up of it already !
Iām not surprised you are still tired ā¦ the treatment prior to surgery knocks the stuffing out of you alone x
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@marionse25 Oh no that sounds rotten No wonder you are shattered if you arenāt sleeping well and it sounds like you are suffering too with cording ā¦ itās awful isnāt it 
Glad you have made a decision re your ongoing treatment , Iām rubbish at keeping up so canāt remember if you d already had chemo ?
Iāve found I sleep ok ish wedged into my v shaped pillow but I do wake a few times . Iāve got a huge purple bruise slap bang in the middle of my abdomen underneath where my breast was ā¦ itās really sore and odd ā¦ my husband joked that my boob put up a fight and wouldnāt come quietly and the surgeon had to put a knee on my chest 
could you imagine !!!
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Good to be here joined this groupā¦
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Thatās very interesting about the Herceptin. I have bloods taken at my surgery every week and I asked the nurse last week if the surgery would be giving me the Herceptin injections after the chemo had finished in January. She said they never do and Iād have to continue going to hospital for it.
Hi @arty1
I had a big bruise too and it went quickly. I hope yours is not too painful. That boob fight made me laugh! I am sure mine showed some resistance too.
I will start chemo again on Friday, not looking forward to it. My AI has been delayed as a result, otherwise that is too many side effects in the same time and impossible to know what does whatā¦
I hope you will sleep better soon, it is very early days for you and I must say you are doing very well!
xx
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I had to sleep on my back for several months as my boobs were so tender and I still have chest wall pain, post radiotherapy.
I had chemo and Herceptin after surgery, then radiotherapy.
We are all thinking of you and the others post surgery. Whichever process you have itās so emotional as our boobs are part of being us.
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Yes, unfortunately I will still have to go to the hospital as well. Had telephone appointment with my oncologist this morning and I asked what would happen. Was hoping I could have them more locally.
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Afternoon all
Iāve had a crazy weekend taking my friend to hospital for her hip replacement on Saturday morning, picking her up yesterday and looking after her dogs and cat, one of whom canāt be around strangers! I had to walk them in a private field and what I realised was that in total solitude, you can sing and dance as loudly as you want as nobody is there to label you a nutter and when you live in a village, word gets around fast! I was also teaching, dropping teenagers off, friends round for dinner etc. etc. Itās all got too busy again really and I start radiotherapy next week. 
@marionse25 Iām so sorry to hear that you are still having such a bad time of it. I think having a Kadcyla group sounds like a good idea with the wonderful @kartoffel and @isthisreal . Massive well done on getting to yoga and Pilates and Iām glad the black panther is thriving.
@pennyp - Youāre dead right that this is the place to āget things off your chestā!
@arty1 - I am still going to bed at 8:30pm if I get half the chance. My bedtime used to be 11pm. I finished chemo in early July and mastectomy was 7th August and yet here I am still loving an excuse to get my pyjamas on and crash into bed. Weāve been through a lot. We just have to give in to tiredness and not fight it. How funny, I also had diarrhoea in Dunelm!! Note to everyone: stay away from Dunelm until treatment is over.
@louc Welcome to the HER2+ Pack. Yep, weāre all familiar with exhaustion! I wonder if the ovaries aching could be something to do with chemo-induced menopause? Iām through menopause and out the other side now (Iām 53) but I used to get aching ovaries when I ovulated and found that in Germany this is called āmittelschmerzā (middle pain) so was relieved to know this was definitely a thing. Definitely worth an ask of your BC team.
@joshrod and @magl - Welcome to you also. We are a super friendly bunch so do join in and share your news, both medical and conversational. Pictures of pets and wigs/headgear also very well received!
@chakakhan Iāve been told to use Aveena cream. Iāve also been given some Flamigel RT for radiotherapy. I went to a radiotherapy class last week where the radiotherapist recommended E45 then left the room and a nurse promptly stated that she disagreed as it contained paraffin. All a bit confusing.
Salbert
x
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Thank you Salbert, I have Occult BC and my treatment has been much delayed because although I have ER & HER2 in lymph nodes they havenāt found it anywhere else. No lump. Theyāve tried everything to find it CT scans, MRI scans, ultrasound scans but no luck. I had Axillary Node Clearance in July and started Chemo on 2 September (Paclitaxel weekly for 12 weeks), Trastuzumab 3-weekly for a year and Letrozole for 10 years! - I particularly like the assumption they make that Iāll still be around 10 years hence!
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@kartoffel @marionse25 @salbert
Sorry for the radio silence. Iām trying to cram in doing lots of things before the Kadcyla starts on Friday when who knows how Iāll feel afterwards. I see the oncologist on Wed so will find out the rest of my lump results that werenāt back last time, and what other ongoing drugs Iāll need alongside the Kadcyla. Iām so sad to be going back on the chemo train again, and itāll be really hard walking back onto the chemo ward.
A lady on one of the other groups has had bad headaches and joint pains with it, but had Zoledronic Acid at the same time so itās not clear what is to blame.
I am reading all the various messages on this group. Itās reassuring hearing advice and similar worries etc Thanks for including me in your chatter!
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Ive been reading all the messages and trying to keep up with who says what. Good luck to the kadcyla people.
With regard to creams and silicone post surgery, iāve just started using aloe vera cream on scars as recommended by BCN. Also surgeon recommended silicone tape for the scar on chest where port went in amd out as that was a bit more visible. My oncolgist recommends Aveeno cream as well prior to radiotherapy. I was gping to ask about Flamigel today at my radiotherapy planning appointment but forgot as it all happened quite quickly and i thought there would be more time for discussion. I was a bit disappointed also as radiotherapy is not starting until 28 October - i had hoped it would all be over by end of October. Never mind i suppose i have more time to recover from my op and get fitter.
Penny
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