Hi to everyone. I am reacting out as I know I need all your positive thoughts and advice. I start chemo tomorrow - Pembo Carbo Taxel and I too am trying the cold cap. I am 53 and had Hodgkins Lymphoma as a teenager. I have 2 (donor egg) children age 20 and 22. Have lost my hair 3 types as a young adult and will try everything to keep it. My lump is big and so chemo first surgery then radiology they say. I cant take it all in - the hardest telling me children and my parents. I think I am stage 3 but I don’t want to know really I want to focus on the getting better. I had a PICC fitted yesterday. Any advice on what to drink/eat wilst doing chemo? Love to you all in advance Melissa xxx
What a journey it all is - I know so well that place of having to tell adult children and try to keep emotions on check when you are all over the place. I did feel it was the hardest thing I did in my life. Of course though we cant protect our children from all life’s harsh realities (like we worked so hard at doing when they were little). They must do their own journey with this and in some ways - they will be strangely richer for it as they (and you) discover new sides of themselves.
I have had 2 rounds of EC chemo (known for hair loss) and will then move on to pacliatxel - well thats the plan for now. Then I will have surgery and then I don’t know what! And learning to live with uncertainty I'm finding is part of this journey.
I am using the cold cap and so far no hair loss! You have to steel yourself to get through the first 20 mins of brain freeze and then I have found it kind of ok - not pleasant but definitely tolerable. I would say find something to distract yourself for that first 20 mins so you aren’t focussing on it - a podcast or a conversation with a friend about something other than cancer. Before you know it your head will be numb and you wont notice the sensations on the same way.
I have been fortunate that I haven’t felt nauseous with the chemo - in fact have been starving all the time. I have however felt lightheaded and disorientated after my last round and I need to keep reminding myself to drink more water to flush the toxins out. It definitely does help - in fact here is my list of foods I’m concentrating on:
Plenty of water/green tea/cranberry juice
Cruciferous vegetables - broccoli/cauliflower etc
healthy veggie soups
solero ice lolly (I got a horrible throat ulcer in first round and this was pure heaven on a stick!).It’s great you are focussing on getting better - this will help you so much to get better. I find it helpful to try and find something beautiful in every day. Yesterday it was the daffodils - although I also had a grim few hours where I was just so tired and tearful - the two can go hand in hand. I think of myself as riding waves - that image seems to help me not spin off into orbit too much.
Do you have a Maggies centre attached to your treatment centre? If so would really advise a visit there. Ours in Leeds is a great place to spend some time when at the hospital waiting for appointments/bloods etc. They also have some great classes.
Finally getting out at some point every day - even if for just a short while alters the perspective of everything.
We are here for you . Jan x
thanks fir replying just had first chemo and ok for some reason i am starving and craving chips! Must of the time I am super healtyI’ used cool cap and didnt think it wasthat cold or uncomfortable either. I know its early days. Do you have same cancer and grade3? If you dont mind me asking. We dont have a maggies but within the hospital there are a lot of macmillan helpers/nurses/support groups.
I know no one with TNBC though!
when is next chemo? Mine are every Friday..
Yes I have TNBC - it’s grade 3. Grading is different to staging - you probably know that (I didn’t at first though). There is more info on the site about staging and grading if you wanted to look - but maybe you don’t yet. I think it’s all about breaking it down into manageable chunks to be honest in terms of what to get to grips with and when. Im awaiting genetics which will inform my surgery options. My plan is 3 cycles of EC (once every 3 weeks) and then weekly pactclitaxel, then surgery. But plans can change. I already had to wait an extra week for my second round as my liver levels were out. Also I have an MRI scan next wednesday to check progress - so that could change the plan too. Im finding that I really have to surrender to going with the flow. If things go according to plan my next chemo will be March 30th - but scan may dictate something different.
Anyway - well done on getting through today and for braving the cold cap. Be easy with yourself over the next few days. Drink lots of water and if its chips you want. - have them!
how are you doing this week? Do you work at all? Good luck with MRI tomorrow I have mine on Monday. I did have a neck ultrasound before my last chemo and (calcium in blood) looks like i have overactive parathyroid (?! Never even heard of it!) they have to do a bone scan at some point aswell, could mean surgery. I have my next chemo on Friday. Are you doing immunology too? I have this every week.
how are mouth ulcers ? Are you doing a 3 day injection at home for white cell count? I am bot sure I even want to know results on MRI tbh although although I may have to know.
enjoying all the spring like flowers when I walk round the local park although firat few days didnt want to go out. Focusing on lots of juicing when feeling up to it and have a great cafe that does it nearby.
Aaaaaah, nice to hear from you - though sad that you were obviously awake at 5.00 this morning - that early wakening is tricky when stress levels are high. I hope that sorts itself for you as sleep is so important for recovery of both the body and the mind.
My MRI is at 8.10 tomorrow morning! That will be a challenge to be up and out and there for that time! I have asked for one of the breast care nurses to ring me later in the day with the results. It Will be showing whether there has been in any change in size - and whilst it’s scary to know - I find it scarier not to know. For me knowledge is power (when I feel I have so little with the damn lump. If i know what I am dealing with i can confront it. Also its my son’s birthday tomorrow and mine the day after so surely it cant be bad news??????
I have never heard of a parathyroid either? I will look it up in a bit though as now I’m curious! I’m not doing immunology (will ask about that though), nor am I having injections (might ask about that too). Treatment plans are all so different aren't they?
No mouth ulcers at the moment - I am using mouthwash every day as a preventative. Im good overall this week - last week I was unbelievably tired and spaced out for four days which started 3 days after my second round but it did pass over.
I hope you have good support around you with family/friends?. Im fortunate in that I do plus yes, I am still working some hours which I find good for my mind.
I really feel for you having gone through this process a few times - you have fought before and you will fight again. Be kind and gentle with yourself also though. Build in treats and do things for yourself that calm the mind. Ever considered yoga?
Sorry you find yourself here. Pembrolizumab has only recently been approved for neo-adjuvant use (rather than use in the metastatic setting) and sounds very promising. I hope it will turn out to be a game changer for PD-1 positive TNBC. All the best with your treatment. I would love to know how you get on with Pembrolizumab - it’s part of my next treatment plan if I get more secondaries.on what to eat and drink, certainly drink lots of water, and eat what you fancy. There will be times when the treatment messes up your taste buds, but it passes.
Im doing ok this week thanks - though tired. It’s a week of mixed news! The good news is that the MRI was positive in that the tumour has shrunk 66% after 2 rounds of EC. I saw the consultant this morning who was really pleased with this result and said my treatment plan should continue as scheduled.
However I had my bloods done this morning in prep for chemo on thursday and my white blood cells are low so I have to have it done again on thursday morning. If not increased enough will have to delay treatment again. He talked about a Filgrastim injection to boost this - but I’m concerned about additional side effects (bone pain).
Im going to try and put my energy towards the good news of the shrinkage of the cancer and hope my white blood cell count increases - its currently .6 which is really low and I am really disappointed about that.
What about you? How are you doing? Did you get CT scan results? The whole waiting game for everything is the hardest isn’t it?
sorry to hear you have to delay chemo but so happy that it seems to be working. Mega plus! I have the white cell injections and (well not yet) have bo bone pain. I have them for 3 days after chemo and I was so worried they would hurt - not at all!
i have my CT scan this afternoon and see consultant on monday. What is EC again? I am 3rd week of having weekly paclitaxel and carboplatin with every 3rd week Pembrolizumab (immunotherapy) I think anyway! My brain is mush.
i am thinking I need to work but I have to look put together and so really worried. I am part time estate agent. I also work in local school as exam invigilator.
when will you know if you can have chemo?
sending love x