Hi @diamonddapple sorry to hear youāve had such a tricky time with your 7th cycle. Sounds tough
Iāve been doing well thanks. Hiding lots and wearing a face-mask. Resting for 10 days after each EC then feeling better. Think feeling tired and ill is just the norm now.
I had my last EC last Friday.
My hair is growing back.
I bought a home exercise bike to do gentle exercise weeks 2/3. Also been going to slimming world (i was a target member when I got diagnosed). Iāve lost 7.5 lbs in 4 weeks. Had put on a stone. Feeling more like me already. I worked out I felt rubbish if I ate unhealthy foods and rubbish if I eat healthy - so I might as well look after myself.
My surgery for lumpectomy and removal of some lymph nodes is due for 10th Sept. Got to avoid Covid now or it wonāt go ahead. High risk of blood clots/ bleeding if I do
Really sorry to hear Diamonddapple and Anna that you both have had such struggles on EC, hopefully things improve going forwards
I wanted to share a positive update that may help people to see the light at the end of the tunnel. Following mastectomy in May I recovered well aside from a wound infection that was successfully treated with antibiotics. My scar is looking so much better and will continue to improve over the next couple of months Iām sure. I have fully adjusted to my monoboob status and have decided against reconstruction. I completed my 5 days of radiotherapy two weeks ago. I found the radiotherapy to be the easiest part of this journey, no pain and no side effects to date. I was very apprehensive on my first appointment but it went very well indeed. I have had 1 of 5 stand alone Pembrolizumab (every 6 weeks) so due to finish early January. My hair is growing back thick and dark (was fair/blond) so much so that I have already had a hair cut! My energy levels are fully back and I feel so well in myself! Keep going ladies, we DO return to ourselves or even a better version of our selves knowing what we have achieved. Love and virtual healing hugs to you all xx
Morning everyone @lillytiger so pleased you were able to complete all your EC chemos, and that you are now finished and have a date for surgery. @gerry22 thank you for your positive insight going forward and really pleased you are feeling so well. @cf640 hopefully you are back in your home now with stability in that respect at least.
How is everyone else doing?
I have a date for my mastectomy and node rem9val of 3rd September so Im carrying on wraring my mask and using anti bac all the time. I have my nephewās wedding on 15th September so Im really looking forward to a bit of normality.
Unfortunately I was back in hospital last weekend with an erratic heartbeat. Lots of various tests. I have anaemia and inflammation in my lungs but since being on the iron tablets things are settling down, thank goodness.
Sending love to everyone xx
@diamonddapple i hope you are continuing to feel better everyday, isnt it good to be done to be done with ec. I have had some lung issues that have had me in a and e too, i am slowly getting better with antibiotics but its a bit cyclic, the gerd is causing white frothy sputum which causes coughing, irritates asthma and i still cant shake it. I am hoping that now its just pembro that the gerd stops and i can stop the acid blockers and get back to normal. Everyday i get further from last ec means i feel a little better.
@gerry22 thank you for your positive post.
wow its sound like you have healed well. Thank you. One thing to note is that i accidentally burned/blistered my skin under my arm with a hot water bottle that wasnt particularly hot. My consultant said that any prolonged contact would cause a problem and wouldnt need to be hot, only warm.
i too have stopped at 3 ec doses. I was too ill to continue and my oncologist said some studies recommend 3 and some 4. As i was chemo resistant to paclitaxel and carboplatin we also do not have anyway of knowing if ec chemo works for me. I am very happy to be done, the vomiting fatigue and brain fog after round 3 had me not knowing which way was up. I am 4 weeks passed and starting to feel like myself again and am now able to walk round the block, although i then need a nap!
I have 15 days of radiotheraphy starting early september and 10 more doses of pembro. There is light at the end of this tunnel ladies and it is looking better everyday!
I wish everyone well with their next steps. Big hugs Anna xx
Hi all and thank you @anna_x51.
Im back in hospital after my 7th infusion of paclitaxel and carboplatin. Iām not sure how this is going to improve given the same thing happened last weekā¦
They are saying it is more liky to bee an infection of aome sort but tnobody has any answers yet.
Im teying not to think too far ahead.
I hope you are all doing well and Anna, its great to think of you striding around the block.
Clare xx
Hi all
I hope everyone is doing well and getting through it. @diamonddapple i hope the surgery went well and recovery is going great!
I am 9 out 15 or radiotherapy done. Its starting to get tiring now!
I wish you all the very very best. Big hugs Anna x
Hi @anna_x51 glad you are getting through your radiotherapy and hopefully the tiredness will abate once you have finished.
I am now 2 weeks post mastectomy and sentinel lymph node biopsy. Im doing well apart from seroma which is very strange as it looks like my breast has grown again. I didnt need much pain relief after my op, just paracetamol for a couple of days. Im getting on fine with the allocated post mastectomy exercises. Just waiting for results from surgery then once its all healed I will have radiotherapy 5 days a week for 3 weeks then more Pembro.
I had my nephewās wedding on Sunday, it was l9vely to go out somewhere for the first time since I was diagnosed 9 months ago. It was such a lovely day.
How is everyone else doing. @lilytiger hope your surgery was ok and you are recovering well. @cf640 how are you doing on your treatment ad I know you had been hospitalised a few times.
Love and hugs to you all xxx
Hi @diamonddapple
I have been in hospital after my last three paclitaxel/carbo infusions and finally called it quits and asked for a new oncologist.
Which means Iām floating along waiting another week to start treatment, I think. Iām meeting with the new oncologist next Wednesday. My vision is still bad so the opthalmologist said no more chemo just yet. Iām seeing them next week too by which time i hope to be able to see and drive and be ready to start EC.
Itās making me worry that Iām not getting the optimal treatment but Iāll ask the oncologist when i see her. I didnāt think it would be this messyā¦i feel Iām being short changed.
Im glad youāre not in pain- thatās great news and very encouraging. Iām due to have a mascetomy and node clearance some time early 2025. Are you having reconstruction?
Xx
@cf640 so sorry to hear of your struggles with Paclitaxel and fingers crossed your new Oncologist can allay any fears you may have. I have been very lucky with my Oncologist thank goodness.
The fluid accumulation in my mastectomy wound has increased so I may have to have it drained off.
I am not having a reconstruction, I just want to get on with my life.
Let us know how you get on with your new Oncologist xx
Ask about how much youāre chemo dosage can be lowered without compromising your recurrence rates etc.
I very much wished Iād accepted the offer of a lower final Docetaxal as I now have peripheral neuropathy of fingers and feet thatās not resolving at 4 months post ending chemo.
I think that lowering chemo by 20% doesnāt alter outcomes, but your oncologist will be able to tell you the details.
Xx
Hi all
Good to hear updates
I had my lumpectomy on 10th Sept and had full lymph node clearance down one side with a drain. That was removed after 6 days.
Iāve been doing my exercises but Iām finding them tricky. Still feeling very sore and bruised. Still taking pain killers regularly. Iām going to contact the nurses to see if this is normal.
Not driving yet. Struggling to see how I can go back to work yet. Was hoping to only have 3 weeks off.
I see my oncologist on 2nd October to see if i need more chemo based on further testing of the lymph nodes they removed. Not sure yet when or how much radiotherapy I need. @Vibby - sorry to hear about your fingers and feet. @diamonddapple - glad your op went well. Good to hear you know the plan for your radiotherapy. Hope the seroma gets better. So lovely you got to enjoy your nephews wedding @cf640 - sorry to hear youāve been so unwell after each infusion. Good luck with your new oncologist @anna_x51 - have you finished your radiotherapy now?
@lillytiger
I hope you settle down quickly- and you dont have to have much more treatment.
My new oncologist seems brilliant. She is delaying pembro for now and ordered a scan to see where the horrid tumour is at. I wish i had her from the beginning but at least she will see me through the next few months.
Ćm meeting with the surgeon next week so thats another milestone!
I hope everyone is getting towards the end successfully
Xx
Hi @diamonddapple
My new oncologist is a gem. She sent me a letter two hours after appt outlining what we agreed and action pounts that she had already taken! Iāve gone from budget treatment (think grotty B&B- would skirt around questions) to 5 star.
When i went to the chemo ward, i think she or someone had arranged for me to have a senior nurse and the quiet bay. I was monitored and checked and felt when i left, that i was ok. They said they were worried i wouldnāt come back but honestly Iām more scared of the tumours than of chemo.
Thank you for asking!
Xx
Hi @Vibby
They lowered the paclitaxel for my last infusion by 20% and slowed it down but that didnt stop the reaction i had
I was going to ask for a reduced dose of EC now im on that but the team wants me to have a scan before altering anything because ive now missed 4 doses of Pax/carb and have had 4 weeks off in total because of neutropenia and sepsis.
Im wondering if anyoneās plan sticks to schedule??
Xx
Mine stuck to schedule, I just skimmed by with neutrophil count each cycle !!!
Iām just regretting the longer term side effects I seem to have been left with
Hi @lillytiger
Sorry to hear you are still very sore and bruised after your op. Did you manage to contact your BCN and get some advice?
I saw my surgeon on Friday and they only found 5mm of the cancer left in my mastectomy which he said was excellent as the original tumour pre chemo was 65mm. And there was no disease in the sentinel lymph node biopsy. So onwards and upwards. I iust need to wait for a date for my radiotherapy although I still have the seroma which my surgeon isnāt concerned about although it is restricting some of my exercises.
I hope you get some relief soon x
My Taxol was reduced to 80% two thirds of the way through as 2 of my treatments were delayed due to low neutrophils. The reduction continued for the rest of my treatment and I didnt have the last EC due to being hospitalised twice xx
sorry to hear youāve had such a tricky time with your 7th cycle. Sounds tough 
itās a tough journey. But we can do it xx
