Hi @marionse25 I was wondering how you were getting on. I am sorry its been a difficult time. The responibility making these decisions is tough, but i hope now you have made the choice you will feel a little better. All you can do now is give it a go and you will have the comfort that you are trying everything. How long does the kadcyla cpurse last? I hope the side effects are manageable.
Ive treated myself to some new clothes and been out to MacMillan coffee morning today and saw some friends for the first time this year. It was lovely to see people tho answering lots of questions was quite draining. Not sure if it was a wise thing to do seeing so many people in a confined space . Cake was nice tho and i won a box of chocolates!
All the best.
Penny
Good to see you in here @marionse25 We can have our own little Kadcyla starters group… you, me and @isthisreal. I got my port in yesterday and bloods done, so I’m all ready to get this party started.
Interesting what you’ve read about the hormone/herceptin studies… I’m also triple + and I’ve never heard anything like that mentioned. Can you share what you’ve found?
Hi @pennyp
Thank you for your lovely message. Happy to see you seem to be doing ok. New clothes sound great, and cake and chocolates even more! Meeting people must have been a nice change, I am trying too as we cannot hibernate all the time.
I will wait a little bit and make sure my scars are better before I shop for the new me. I can fit into tops I love but became too tight, however I look quite boyish with my flat chest now. My short chemo hair looks funny too so I am already wearing hats!
My new chemo is supposed to be every 3 weeks until May, however the consent form I have signed states 14 sessions which is closer to one year! Either way it is quite a long treatment. At least I know that I can switch back to Phesgo injections if my body says no!
I will be back to work on Monday 7. My job is stressful but a well needed distraction.
Have a lovely evening
Hugs
Marion xx
Hi @kartoffel and sorry @jeml I got my pencils mixed up! I hope you are doing ok.
We can indeed start a new trail with @isthisreal!
I had my bloods done earlier today so ready to go too.
I will have to check the studies as I have not kept them or kept links. One was an Italian study, the other one Chinese I think. They highlighted the need for further studies, and also the need to consider TPBC as a separate type.
Reading too much is probably not a good idea as my anxiety has gone really bad! Our doctors know what they are doing I
Am sure.
Take care
Marion xx
@marionse25 Sorry to hear that you have had a rough few weeks but so pleased you’ve made the decision to start Kadcyla.
I really found the Moving Forward course helpful but I was still in ‘active’ treatment with Herceptin. I did find it hard that most of the others had finished their treatment some time before so they didn’t get the ongoing issues I was having. If I was to suggest going I would wait until all active treatment has finished including targeted treatment ( but that’s not the recommendation from BCN). I feel different now that I have finished my treatment and have a clear annual mammograms compared to July when I went on the course.
Don’t ever apologise for being negative, it’s ok, we’ve all been there. If you can’t moan to us who can you moan to! Posting without your real name allows you to be more free and open about what you want to say.
Take care 
Hi @marionse25 and @naughty_boob i’ve booked my Moving Forward course for just after i finish radiotherapy if all goes to plan. I was wondering if it was a bit too soon after treatment, especially as i may be tired, but it was the one in the town i had my treatment in so thought i would prefer that. I will see how i feel nearer the time. They dont come around very often, but i could go to other nearby towns if necessary. I’m hoping it will help to meet other people, younger and older. I think this os the best group tho for getting things off our chests, if you excuse the pun. We can have a good moan or cheer people up in the moment rather than waiting for a meeting. P.
@pennyp I finished radiotherapy in January but was waiting for genetics test, which was negative in May. Therefore no further surgery, then booked onto the next MF course which was July. I am really grateful to the ladies I met at the course, we have a WhatsApp group and 4 are within a 7 mile radius to me. I’d not met anyone that wasn’t closer than 30 miles before.
The course is great but not having the genetics results and continuing Herceptin until September, I was still in active treatment with side effects. Breast Cancer Now do not class Herceptin/phesgo/ targeted treatment as active but my oncology team did. You have to do what is right for you. I hope you are able to attend.
Hi @pennyp
I don’t want to discourage you, there were useful bits and the volunteers running the sessions were fantastic. I had separate chats with them and it gave me strength as they were both BC survivors, one just 5 year all clear and the other one 11 year. I am in London and there aren’t many sessions either, and nothing close to where I live. It was not the right group of people for me, we were only 7 as a few did not turn up, 4 knew each other from the same hospital where it was run… I booked as I wanted to meet others F2F and wanted to plan for better days. If your session is close to where you are go for it. Listen to your gut feelings!
And we will still be there for you!
Big hugs
Marion xx
Sorry ladies - I haven’t kept up with the chat 
I didn’t realise that post mastectomy fatigue was a thing but my god it seems so - I still feel like I’m groggy from the anaesthetic almost a week on. First day after surgery I felt ok and I felt elated to get surgery out of the way … but as the week went on I’ve felt increasingly fatigued and quite down in the dumps , has anyone else felt like this after their surgery ?
Afternoon all. I hope you are all doing ok.
I’m just totally exhausted…… someone suggested I joined this thread.
I’ve had a mastectomy and also and then a follow up full lymph node removal. Have had 3 x EC and have number 4 of 9 paclitaxel tomorrow. I also start Pshygo (think that’s how you spell it!) injections once every 3 weeks for a year tomorrow. Has anyone started these for HER2 positive?
I’m working full time but from home but starting to think I may have to reduce hours soon ….
Can’t wait to ring the bell on chemo and to get the radiotherapy over and done with fingers crossed before Christmas.
Is anyone else having aching in their tummy area …… I feel like it’s my ovaries aching!!!
Sending positive vices to you all. Keep being amazing xx
Hi @arty1
I can defo say it is a thing! It’s been 4 weeks and I am absolutely drained. I still have to sleep on my back with my v shaped pillow, and can hardly sleep. Still have a lot of seroma on the left side but not on the right. And cording arghhh. Have been doing pilates since last week, and yoga too, both help with everything although I still feel like a zombie! Back to work on the 7th so I hope I will gradually feel better. I hope you do too.
Take care
Marion x
Hi @louc
Welcome to our lovely HER2+ pack, although I am sorry you have joined the party.
I also had EC x 4 and Paclitaxel x 12, and 7 phesgo injections so far. Switching to kadcyla on Friday.
Phesgo has been ok for me, except that I have a needle phobia! I have used numbing cream to help the long injections. Otherwise side effect wise some shooting pain in the legs on day 3/4 each round, not lasting very long.
I continued to work full time until surgery day so you may be able too. I found work to be a good distraction.
No tummy pain for me sorry I can’t advise on this one. Do speak to your BCN about it.
I hope the next rounds of chemo go smoothly
Hugs
Marion x
Hi again @louc
Forgot to say I had chemo first, and started phesgo before my DMX, so a bit different.
Marion x
Hi @louc
Welcome to the group, so glad you chose to join. I had Herceptin but I’m 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 I’ve 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.
Yes! I’m three weeks down the line and just starting to get my energy back. I think feeling down in the dumps is also natural. It’s a huge amount to go through.
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 it’s 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 
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 it’s 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, it’s 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 ‘normal’ but I decided to be more cautious and I didn’t 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 it’s 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 O’Riordan’s Instagram. It would really well with no pink or redness on the skin.
Hope this helps
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.
Really helpful, thanks very much. 