*** December Chemo Club 2019 ***

Hi Jojo

Thanks so much for your lovely post. I have had my 2/3 EC this morning and the have to have 3 cycles of Docetaxel followed by 12 months Herceptin and 10 years of Tamoxifen. I am doing ok at the moment and have already shaved my head as two weeks after my first cycle i had a baldpatch and my hair was coming out in clumps. I had a pretty bad Thrush in my mouth and all down my oesophogeal tract last time so im all prepared and have Gelclear/Difflam and Fluconozole all ready. Havent heard about Evonail but will take a look thank u x

Hope you managed some tasty xmas food x

Hello Blackcat20

Thank you for your lovely post. I always enjoy reading you posts as they are so supportive. Not surprised you work in that area in your profession as you show great empathy and understanding

It is reassuring we both have had a dramatic positive result as a result of undergoing chemotherapy- makes it all worthwhile. I too find the surgery daunting but it’s always positive to hear of ladies who have come through with good results. Sure that will be us too - it’s just the going I think will be the hard part. Just like the treatment once it’s all happening we will get through it ok. I wish you well next week and will be thinking of you on 2nd.

Part of me wishes I don’t have a choice with my surgery to come as you are so positive and sensible in saying you just want rid of the breast where the tumour was. But when offered to retain some shape in one op it is a bit tempting but am still not sure. I will have to take more definite advice as to how confident the surgeon will be with mammoplasty result if I decide on that or easiest may just be to accept a mastectomy. The BC nurse did show me the bras you can get which look quite attractive and also the different types of prosthesis one can get so it sounds quite positive. She did sketch pictures to show me the way the ops are done but next time I could ask to see photographs. I feel you get much more support from the BC nurses at this stage rather than at the beginning of this process. 

I too have to return every three weeks for Herceptin for 45 weeks. Talking to the treatment room staff yesterday they said they felt that those of us who have to do this feel much more supported than those than just abruptly finish chemo. We are still in the system and still can ask questions and feel their support so every cloud has a silver lining !!
Do hope you had a lovely Christmas and try to enjoy a good Hogmanay !! All the best for the op and thanks for your support.

So good to hear your op was a success and you managed to your daughters for Christmas as planned. Hope you are doing ok and now more comfortable . It must be such a relief to have surgery over.

Love Jojodot XX

Jojodot 

yes it’s a relief to get the surgery over, I’m having the drain removed on Sunday. I was told by so many people that the operation is easier than the chemo and I didn’t believe it, but it’s true. All the best for your op, you too Blackcat20 xxxx

Eileen xxx

Hi Allergill.

Thank you for your response. You are nearly through chemo too so it won’t be long and hope you feel ok. I found the Docetaxel /herceptin/perjeta so much harder than EC cycles. I had three weekly so hard hit. However it worked as I was told I have had a dramatic response since two cycles of DHP and had my last treatment yesterday. 
I have to start the bisphosphonate infusion next time I go to chemo ward as I too have to get 15 more Herceptin treatments three weeks apart. Can you tell me how you reacted to the bisphosphonate particularly the first. 

I had not heard of the therapeutic mammoplasty before so it was a surprise offer but if you have a dramatic response like with me you may be offered it. There is another thread on here of ladies who have had it and given me some answers and in their cases they had other breast reduced at the same time. In my case I am a smaller cup so a bit unsure if it would look good. But know within myself it is probably safer to have a mastectomy. Food for thought.

All the best,

j

Jojodot X

What have you dressed those poor cats in? They are very compliant, mine would have removed body parts (actually that would save an operation around end Jan...) with their claws before I even came close with any outfits for them!
You are obviously as daft as my boyfriend when it comes to spending money on things for the cats, mine were lucky to get more than their normal meagre rations of wet pouch food on Christmas Day...yes, it is even tight down south in my house. Did give them a smidgen of turkey later on though.

Jojodot
I'm with you now, last chemo today, feels good doesn't it and nice to share with all. Blummin steroids have just kicked in however...great!
I don't however have appointment with surgeon till mid Jan (they wanted me to have an MRI after last chemo to see impact on already-responding-well lumps) so no confirmed surgery date yet. Mine was always going to be a mastectomy due to spread of lumps/strands and that I have/had (??) inflammatory BC so skin needs to be whipped off too.
Sorry, can't help with your choice - are you able to talk to anyone who has undergone your options? (Breast cancer now may be able to help in this respect or some cancer care teams do organise).
I believe my options will be regarding reconstruction, which will be delayed.
I actually want both taken off, mainly for symmetry, don't have genetic BC though so may have a challenge but this is very much a personal decision based on my priorities in life, as should yours. Important to consider the future and think how you'll feel in X years time.
Good luck with your decision. Whilst I am a very decisive person they're not always the best!

Blackcat20
Good advice, as always. Am leaning towards implants as DIEP sounds like a lengthy op where your body can still reject other bits of your body (though a free tummy tuck does sound enticing) and also the thought of plastic surgery (never really been on my list of things to do) for free, particularly as things start to go south...well that pricked up a (relatively young) northerners ears!
Best of luck for next week, I shall be looking out for your posts.
Of course I need to still have an open mind as there still may be challenges ahead which I may only find out mid-Jan...only time will tell eh? And the thought of a drain (and I am not at all squeamish) not good...in fact yuckety-yuck-yuck-yuck (jojodot - is it as yucky as I imagine? I've been told not by another lady post surgery but a small poll always helps).

All,
Am I missing a monthly surgery thread, I see chemo and rads?

Sam X

Hi Jojodot,

I will certainly research mammoplasty, which I hadn't heard about, before my meeting with the surgeon.  Thank you for the heads up!

With regard to the bisphosphonate, mine being zoledronic acid (the cheapest but as effective in trials as others, I will have it IV with my Herceptin and Perjeta infusions, though not every three weeks but likely to be every 4 or hopefully 6 weeks minimum, maybe up to every 4 months depending upon regular testing.  Bear in mind after a hysterectomy at 35, then HRT for 15 years, I went through the menopause at almost 15 years ago and do have some signs of osteoporosis already.  The NICE research shows a slightly higher success rate in post menopausal women, whether induced menopause or natural menopause.  I will reference the NICE document which is UK based but references worldwide research documentation.

I have gastric issues so the tablets, which may cause nausea, vomiting and decreased appetite. I have bone pain and joint pain with Docetaxel, so not sure if there is any side effect from the one bisphosphonate or Docetaxel.  I also have arthritis.  Although I am 64, my last filling was the day before my 21st birthday, I have good gums and good teeth, which was on the check-list for my suitability!  I am having 12 weekly dental appointments at the moment and good dental hygiene is essential.  They will have checked all this with you if you have already been offered it.

I have researched accepting it, and used, amongst others Nice guidelines.  There are potential bad side effects, scary to read but 0-0.7% incidence.  The checks on dental health have reduced the initial incidences so I thought this was worth considering but going with potential benefits anyway. 

The main benefit for me, HER2-positive grade 3 already in Lymph nodes, is to protect my already weakened bones and to prevent secondary breast cancer in the bones.  A common progression.  The medical check ups we get here are excellent, my dentist is happy to continue 12 weekly check-ups whilst under treatment.

Due to 3 episodes of Pre-eclampsia whilst pregnant, and a few years of high blood pressure (went when I retired!) I have a slightly reduced kidney function for my age, this is another consideration for me but all those who are given this drug have renal function monitored.  So I have accepted this possibility as an acceptable risk too.  

The NICE site address is:  https://pathways.nice.org.uk/pathways/early-and-locally-advanced-breast-cancer#path=view%3A/pathways/early-and-locally-advanced-breast-cancer/early-and-locally-advanced-breast-cancer-overview.xml&content=view-node%3Anodes-person-with-breast-cancer

I downloaded the pdf document shown on the left side of the page midway down.  

The main NICE guidance and evidence regarding the licensing of bishposphonates is a bit heavier reading, but here:   https://www.nice.org.uk/advice/es15/chapter/Relevance-to-other-NICE-programmes

I did use information from here to discuss with my Oncologist after he offered it to me as a suitable candidate.  I need to research and reflect to make these decisions and he was happy to see me to discuss my questions once I'd read it.  I will likely have the 6 monthly infusions after 3 years, maybe for life or until tests show its no longer appropriate or I start to have unhelpful side effects.  If it is too painful, or causes severe reactions to my digestion/stomach I may reconsider.  Its all a balancing act, but I made sure I can re-evaluate and discuss its continuation when I said yes.

Sorry if this is too much research to answer your question, but I can't differentiate side effects yet, I am in pain and have a really bad stomach at the moment but they think its Docetaxel.  I started with peripheral neuropathy, particularly in my feet, but also less severe in my hands this week.  I'm not sure how old you are, but I have been told some of my problems are in part due to age and pre-existing problems.  

If you read anything you have any questions, I will do my best to answer.  I did look at quite a few papers but have used NICE as they condense results quite well!  Also, being in the UK, it makes sense as we can only be offered what they have approved!

The very best with your decisions, I always try to use cost/benefit analysis, and some of my analysis did take into consideration my age.  I may go with the mastectomy because of my age, then again, it may be the mammoplasty once I've discussed it with the surgeon.  I am at Huddersfield Royal Infirmary, and they have been excellent, so I will listen to their views before the final decision.  x

Yorkshire_defector ha ha they are my daughters little bald cats, they come to you to put a t shirt on if they are a bit cold. They have loads of different ones. I do spoil them though, I got them the banana beds for Christmas.

As for my two cats - they are furry cats both around 12/13 and would have kindly done the mastectomy for me if I tried to dress either of them in t shirts lol. They sound like your cats, they are happy to come for a stroke on their terms and god forbid I pick one of them up if they don’t want me to - I have scars to prove their distain! 

Hi Jojo thank you so much for your post.  Congratulations on getting to your final treatment.

I have had my op and have chosen to go on Optima trial.  I find out on 6th Jan if it’s chemo or hormone therapy.  I’m really scared about the unknown.  These chats really help.

If I get chemo I really want to try ice cap but I do have migraine, which is controlled by Botox injections every 3 months.  I’m hoping this won’t stop me using the ice cap.  I’m certainly prepared to try it.  

I just want to know so I can plan and get on with whatever I have to face.  

Thank you for your positivity.

Jackie x