@salbert @galdiolus @gromit12 congratulations and well deserved!
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And many thanks to all the community champions for their time and thoughtfulness
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@salbert @galdiolus @gromit12
Congratulations and very much well deserved xxx
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I did cold capping for 4 1/2 of my 6 cycles of chemo (my 2nd cycle was interrupted due to a docetaxel reaction, the 3rd they wouldnāt let me because of the previous reaction, then I was allowed to resume using it for the 4th when I switched meds and they had to conceed the reaction was nothing to do with the cold capping). I lost my hair regardless (head and body). However it has returned in abundance on my body (I remain unimpressed, I was hoping body hair wouldnāt return or at least be less hassle than previously), head hair is coming in but much slower.
I found x2 otc cocodamol tablets before cold capping helped far more than paracetamol but I appreciate nor everyone can tolerate codeine, as a migraine sufferer Iāve always found it more effective. Those first 30mins when the cap is put on are a right kick in the crotch though. Even though I could tolerate it I hated every second of it (my head would go purple every cycle wearing it). No idea if itās why my hair has grown back but Iām telling myself it was so it was worth putting myself through it.
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Definitely tell them you have questions that if they donāt answer before the end. I was told by my oncologist she was relieved I was able to advocate for myself. I keep a list of questions before I go in and then tick them off as the consultation goes on and then at the end reiterated if theyāve not explained everything I wanted to know (sometimes I add questions DURING the consultation if I learn something new).
I also would record consultations (asking permission first), after a while my oncologist started giving me loads of pamphlets and things to read and now at the end of my chemo, even though I donāt feel like I know that much, my clinicians all make passive aggressive comments about me āover preparingā as if my wanting some control and knowledge is a bad thing. Quite annoying if Iām having a bad day already.
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Yes, Iāve noticed they can seem a bit edgy when you do your own research/reading, which makes me a bit suspicious! But then I guess they probably also see a bunch of folks who have ādone their own researchā by watching conspiracy theory videos on YouTube so I can kinda understand the reticence a little sometimes 
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They usually say stuff like āoh someoneās keenā or something equally patronising. I tell them I have no control over what they order me to do (other than refuse it) so I may as well prepare myself, that usually shuts them up.
Itās not as if Iām looking into ridiculous things, usually just things theyāve mentioned in passing so I know itās a possibility it may happen.
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Hi everyone,
Feeling a bit low and confused today.
Can I ask has anyone had a care plan call from their GP, totally not connected to the hospital?
When I received my diagnosis I received a text from my GP surgery saying sorry to hear etcā¦ and that they will give me a call.
Anyway Iām feeling like I wish they hadnāt!
The GP sounded like she was reading from a script. When I mentioned my type of cancer - Grade 2 Invasive Ductal Carcinoma Oestrogen positive HER 2 positive, the response was ā I wouldnāt say itās one of the better ones to have and to stay hopeful ā.
Iāve gone from feeling positive which is how my BC nurse and surgeon make me feel, they are wonderful and I have trust in them. To now feeling very low and anxious.
I get my lymph node and surgery results tomorrow so think this is making me anxious too so not sure if Iām reading too much into the GP call.
Sorry for my rant, just wondering if anyone else experienced this from their GP?
Thanks everyone, love to you all 
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Congratulations @salbert, @galdiolus and @gromit12, you will be fab (well you already are 
). And belatedly @arty1 ! 
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@erica i am so sorry that you have experienced this from your GP. I think that many practices now have cancer pathway navigators to support their patients who are newly diagnosed. I know mine did. I was lucky as my cancer navigator is a breast cancer thriver so I think she was maybe more tuned in.
Please try not to worry about the comments that were made about the type of cancer.
The discovery of Herceptin has had such a positive outcome for those diagnosed with HER2+ breast cancer. If the service isnāt helpful to you from the GP surgery maybe speak with your own breast nurse or of course the BCN on here.
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Hi @erica
My experience of gp knowledge about specialist areas is that they tend to be out of date! Communications from consultants often take a while to get onto our records. My practice rang me in January to ask what was going on as they didnāt know! I found a letter on my my gp record that updated them but they evidently hadnāt picked up on it. Years ago my daughter had treatment for leukaemia and its was exactly the same them. My advice is stick with your care teamās information and leave the gp out of it! And by the way my daughter runs ultra marathons, got into the RAF despite her medical history!
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@sez love your response to your clinician! Go girl! 
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@erica that is an outrageous response from your GP. Surely they would have already got this information from a letter from hospital. Complete lack of care and support there 
hugs xx
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Hi, @erica , thatās awful from your GP practice! Personally they should leave it to the experts if they are not going to be supportive. A simple call to ask you how you are getting along and saying that they are there if you need their advice would be sufficient. I was a bit miffed that my surgery never contacted me again after my referral, but perhsps that was a good thing. You are bound to be anxious about your surgery results but it sounds like you have a good team at the hospital and they will have a plan whatever. Good luck for tomorrow. Big hugs. X
Penny
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Thank you so much everyone, you all make me feel much better. Such a lovely supportive group .
Iām going to just listen to my hospital team and try to forget the GP call.
Itās a beautiful day and the sun is shining here so Iām out for a walk along the beach, best therapy.
Lots of love
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Hi @naughty_boobā¦ thanks so much for being here for us all. I have a question about cold capping. I went to see my oncologist yesterday, and now know that I will be on the EC-T regime; 4 x EC every fortnight, followed by 12 weekly Paclitaxel, with trastuzumab, every 3 weeks. Iāve looked at the Paxman calculator, but it doesnāt have EC-T as a combined regime and when I try the drugs separately, The E & C return no score. I know a lot of ladies are on this regime, so wondered if I was doing something wrong. Any advice would be gratefully received.
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Good morning! I had 4 EC to start with and now on Paclitaxel (had 5 of 12 x weekly so far). After last weeks one, I had lots of redness and swelling of my face and neck for 48 hours, also āwobbly legsā and pins and needles in hands and feet. Also nauseaā¦ā¦. Have you had similar issues? I appear to be sensitive to the majority of what theyāre giving me. Had a week in hospital at the end of January with Pneumonia and Sepsis.
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Hi All,
Just catching up on lots of messages!! Congratulations to our new champions 
@leelee1 I have cold capped through 4 ECs and Iāve had 3 docetaxels (one left). Keeping my hair was a big deal for me but I ended up losing a huge amount after my 2nd EC (on Christmas Day too 
) and a lot more since then. Iād say Iāve lost like 80% but hard to tell. The cold capping is definitely more uncomfortable since having very little hair left as I had loaaaads of hair before for insulation. I take 2 paracetamol before and another lady in the chemo suite recommended these little self heating eye masks (I have Space NK ones) so I tried that last week and it did take the edge off a little. I did think about giving up a few times due to the brain freeze but Iāve kept it going. Not sure what to do with my hair, I donāt want to shave it but not sure how itās going to look when it starts growing back through whatās left?! I basically just look like Iāve been electrocuted most of the time.
@genericuser1 I hope your appointment goes well today and that you manage to get all your questions answered. I write them all down in advance, and just go in with āI have some (a lot) of questions, should we start with them or shall I ask them at the endā - my oncology team have been really great and patient so hopefully you find yours are too, although they know Iām a nurse (although in a completely different specialty) so maybe thatās why 
I also hope your secretary does a good job taking notes, even if he did refuse to dress for the occasion 
@erica Iām so sorry about your GP experience, it makes me sad that some health professionals just have no tact! I would definitely just focus on your hospital team as they are the experts here!!
Sending hugs to everyone! Iāve just had a psychology appointment so Iām going to dry my tears and go for a walk (to the coffee shop for some cakeā¦) š«¶š»
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Morning all
Iāve been reading the thread and on numerous occasions I started to reply but then never finished my response, then the conversations moved on and Iāve literally lost the plot of the the many stories Iāve read!
Well done to all the new community champions for giving your time and sharing your wisdom. 
Iāve had a rough couple of weeks courtesy of the delightful treatment regimen. Today I am singing Johnny Cashās āRing of Fire.ā If I could put a hose of cold water in that area Iād do it. @salbert even the top of the range 4 in 1 Germoloid isnāt working itās unctuous magic.
Realised overnight that what I thought was a thirst quenching mildly pleasant fizzy can of pop does not like my gastric tract. Flipping reflux. Woke up in the night with what reminded me of a shaken bottle of fizzy drink. Frothing and burning in my throat and a mouthful of sour saliva despite doubling Omeprazole. Both ends unhappy so Iām festering in bed this morning. Itās joyous as am I. To think thereās a year of this ahead 
. Hoping the neoadjuvant therapy is the worst part. Iām trying to be thankful for my treatment but Iām fed up. It all feels a bit tedious and relentless. Iām trying to look forward with hope and positivity but the side-effects arenāt joyful and nor is the prospect of surgery on both boobs around my birthday. Iāve yet to decide what to doā¦ farewell to both in their totality or do I hang onto to the right one after āitā has been removed and have an uplift to match up with my reconstructed left one. I donāt know. Gut is still saying they both need to go but head worries about complications of implants and the fact that radiotherapy hasnāt been mentioned, just potential of more chemo if residual cancer found. If it transpired I needed radiotherapy, itās probably that Iād have deformed looking boobs. Wish someone would decide for me.
Brain thankfully feeling better. Last week I was having a daily sugar instead of shower. Felt really out of sorts and spaced out. Nearly fell down from the top of a flight of concrete steps. Thankfully I was gripping the handrail at the time and my sister in law reacted quickly and grabbed my other arm. Close call. I met with a friend another day. I had to walk across a carpark. Felt very unsteady. I felt as though Iād got off the waltzer. Weird.
Enough of my gripes. May I ask when people stated their Zolendronic acid infusions in their treatment plan. Reason for my question is that in my midlife vanity I decided to have my teeth straightened - teeth crowded and difficult to floss. What was to be 19 weeks stretched to 34. I went to the dentist yesterday and he said we are 85% there, so more trays needed. Thing is Iām due to start Zolendronic acid next week with 4th cycle. If I proceed with it I canāt continue with the dental work. Would I be mad to defer the treatment until the dental work is finished?
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@sez Why is it the body hair always wants to be with us so much more than the head hair?!!
I didnāt cold cap in the end, now finished rather than 1pmā¦ think i made the right decision for me. Thanks everybody! xx
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