PALS as already said but some hospitals will have a complaints/getting things right section on their website.
You could also contact the consultants secretary or ask for another doctor to review.
I hope it all gets clear up soon so treatment can go ahead.
@salbert who knew funeral fashion were pick up clothes?
@sn25 re Paclitaxel. Make sure you have loperamide/ imodium in your goody bag of drugs as it can cause I was told to take at the first sign of it. It contains caster oil which can do this to your stomach. I also had to change anti sickness meds to get the one that worked best. I only had Paclitaxel and it was a bit rough for me but as I always say we are all individual and we all go into the bc treatment with different backgrounds and we all react differently. If it doesnāt fell right call your helpline.
@arty1 you are doing amazing with your work and balancing other life commitments. So many people think you main treatment is fine and itās all over but Herceptin has side effects. I struggled for a week after each one. Even now Iām not over cancer, Iām cancer free but with the ongoing drugs for years to come, when does it really end? Those that havenāt had cancer donāt get it in my experience.
Take care all. Enjoy another bank holiday weekend.
Hi @sn25 - I had 3 x EC and 9 x paclitaxel and paclitaxel was much kinder in terms of side effects. When I started on it I had diarrhoea and had to use loperamide, but that was a welcome change to being bunged up on EC. It didnāt last either - had it for a couple of weeks on and off. I was more tired on paclitaxel as itās weekly so a lot more travelling etc and the pre meds, inparticular the antihistamines, made me very tired after treatment. It also caused pins and needles/numbness in fingers towards the end. Other than that, the chemo was fine. I managed to work (at home) throughout, which I hadnāt managed to do with EC. I really hope it goes well for you with minimum side effects! Good luck
Those who have had radiotherapyā¦did you find that the area zapped was particularly painful in the months and weeks after? I finished 2 weeks of radio just over 2 months ago and the inside of my boob and all around it is so painful. Itās not the skin, itās the tissue inside. I also feel like itās getting more swollen so abit concerned it could be lymphoedema, or the start of it. I have phoned the breast care nurses and waiting for someone to call me back but thought Iād ask on here in the meantime
I had chest wall and both boobs pain from radiotherapy and it continued for many months until I saw a cancer physio. I was told that radio is the gift that keeps on giving and can cause issues months or years later. Ihope you get the answers you need for your nurse when they call back.
The physio suggested holding and moving each boob in a figure of 8 and that has helped moved some of the scar tissue from surgery and radio and eased some discomfort.
The is a YouTube channel called The Breast Physio Jen McKenzie, I think Iāve posted it on here on 9 Mar, if you click on my pic it will come up with posts or search on YouTube.
Amazing! Thank you so much for the information. Itās so painful I canāt sleep on that side and it hurts when anyone hugs me etc. Iāll definitely have a look at YouTube and Iām off to do some figure of 8 movement now before bed! Thank you
Hi @sassy3 you are having the exact same treatment as i did. Are you just her2 positive? I finished my Chemo November but still on phesgo every 3 weeks got 5 more to go. @sooz1 how are you feeling after your operation? I not been on a few days so i am trying to catch up again. My little one stayed at my mums for a few days until i had my drains out was so much easier i was scared she would yank them out.
And Speaking of The cold capp i really did not find it bad at all like a lot of people say, i took Paracetomol about half hour before my appointment. I only did two cold capping though for me i found it stressful not being able to brush hair properly or not being able to wash it or even stand under a hot shower. I started shedding a lot and the texture changed and it would just break off so i gave it up and cut my hair into a boyish cut instead until eventually it came out. Some people do have success with it thoughā¦ but for me i just could not be bothered and found it added extra stress on to it allā¦ and i just got some nice wigs instead and thought i would not worry it looking greasy and messy if i ever wanted to go out anywhere i just put a nice wig on instead. That was just me thoughā¦ i felt very liberated when i actually chopped it off. All my nurses was very positive with me and patient about cold capping. @brincat i just read your comment about not having radiotherapy. I had a PCR after chemo but still had radiotherapy just the 5 rounds. They said from start i would need radio.
Thats amazing! Sending love to your mum
Thats great response! I also felt this from the start and it got to point where i could not feel the lump at all. After 5th round i had a scan and there was nothing there.xx
Yes from the start there was talk of me having radio an that is the reason I had an expander put in so it didnt damage the implant. Apparently new studies have shown that it is not beneficial in my case to have radio an that there is not many benefits to myself having it compared to the side affects in future it can give an thats why they have suggested I dont have it. They have still agreed though if I want to have it then I can. It would be a max of 3 weeks 5 days a week x
Wow amazing, today is the 5th day (post first chemo) and the lump is flat, redness almost gone but still she got 6 rounds left. Seeing the oncologist again on 21st May to discuss according to letter cycle 2
@brincat I had a. Complete PCR and no lymph node involvement so I was also told no radiotherapy. I also had an expander incase I needed radio. I felt like I wanted radiotherapy at the time of my results as thought I wanted everything thrown at it but now I feel reassured by my oncologist that itās not needed so for me feel like I have to trust in them x
Iām not too bad thanks, just trying to remember to do my exercises, my range is pretty limited got a real pulling feeling at the end near my armpit. Got all my dressings etc removed a few days ago and I donāt think I was really mentally for it. Also didnāt realise how much numbness I would have over such a large area, did you also have that?!
Thanks for the reply. I have another meeting with radio to go through any further questions before i make descion. I had 1 lymph node involved which makes the decision more difficult for me but they reassured me that after the clearance no further was found. I feel the same i was taking everything i could get but seems silly to go against the experts x
Everything you have described I had. The numbness for me is still there all around the back of arm/armpit and also the underside of the top of my arm. Even though still there it does feel much better now compared to at first. Maybe i have just got used to it. I had the pulling in armpit, turned out it was cording felt like a band was going to snap and I couldnāt go any further with arm. Through physio though it managed to correct itself and went away, she said it must of snapped which is fine but I never felt that. 2nd op to remove lymph nodes I had I never had cording it was more of a tightness in different muscles so movement restriction was different that time. Still working with physio to increase an ease the movements it just all takes time. You will get there x
Thank you, this is super helpful! Iām hoping to carry on working (also work from home) itās my escape and find work a great distraction so fingers crossed! Iām will you will take an upset tummy over being bunged up any day i only managed one ec and seems that was about to mess with my stomach!
Thank you!!! Will definitely get this added to my ever growing repeat prescriptions! Strangely my hospital doesnāt give you anti sickness or any other take home meds (other than wbc injections) with paclitaxol
Im not too bad thank you! Got my phesgo tomorrow and then only 4 left after that. Keep plodding onā¦ have my days sometimes where i can feel a bit nervous but most of the time im fine to be honest. I want to get on with my life and not live in fear. I got two holidays planned coming up in next few weekā¦ and thinking about going on a cruise too! I did have numbness yes and i still do really. It will be nerve damageā¦ also my arm can hurt sometimes but taking nodes away does leave it vulnerable i supposeā¦ i thought i would not be mentally ready but when i saw it i honestly thought its not as bad as i thought it would be. They did a good job and as time goes on it will heal even better too and fade more. @brincat i had lymph node involvement so i wonder if thats why i had my radiotherapy. @sshini93 thats amazing! Keep that in mind, its going away! I kept imaging it shrinking and getting blastered away! A positive mindset does go along way but when you can see the results too it makes it even better. Sounds like she is having amazing response. Sounds exactly like me when i had my 1st roundā¦ let it piss off lol sorry not sorryā¦ i kept giving the two fingers to my breast too it just made me feel better
and find work a great distraction so fingers crossed! Iām will you will take an upset tummy over being bunged up any day i only managed one ec and seems that was about to mess with my stomach!