Well fellow October Starters, my chemo journey has come to a premature end.
I’ve had appointments with my oncologist and breast surgeon this week. The decision has been made to cancel my last chemo for a combination of two reasons.
My CT scan before Christmas showed no real response to chemo in my positive lymph node or the slightly odd looking smaller nodes behind it. In addition, the peripheral neuropathy in my feet but especially my hands is getting worse.
Mastectomy and full node clearance is now scheduled for the first week of February. Depending on the pathology results on my lymph nodes, I may need radiotherapy afterwards.
Hi @dilly Sorry to hear that the chemo doesn’t seem to have been working and you have had issues with hands and feet. Great that you have the next steps in the diary already, sending lots of positive vibes for your next step! Please stay in the group and keep us posted!
@tessie86 Poo free day so far - whoop! Its the little things that keep you positive Nausea is in check and no cold damp chills. Nuts how things can change in 24hrs. Think Nadir has hit the peak and my body is bouncing back. Last week has been shit, lol, (dropped nearly 4kg) but only one more round of Docetaxel b’stard to go. Yee ha.
So glad you are doing better! You were complaining that you were putting on weight earlier in this chemo shit show.
It is a fucker! I have two more to go of the Docetaxel, but touchwood 2nd week after my last dose and just have the “minor” side effects. Pain when going for a number 2 and if I need to go for a number 2 I have to go asap, blood when blowing my nose and very dry hands. only minor… and of course the non stop tiredness.
@tessie86 Yup, nose hairs have done a burton here as well so aggravated by everything! Weight loss will only be water weight so it’ll re appear in the next week - yo yo merry go round.
Dry skin - ive been using a cheap tub of aqueous cream as shower cream for months. Skin never been so good. It contains no irritants at all and acts as a moisturiser as well. Highly recommend, various brands £3.50 500g. I even wash my scalp and face with it. Used it on my kids when they were both eczema prone, brilliant stuff. As soon as my hands or soles of feet get the weird burn or tingle - slap on Urea cream. Stops in the tracks. Helped my hands recover in days from damage caused by swelling when it split and bled. Such fun.
If you are getting bits Ive been using a L’Oréal product for months - eyebrows lashes a bit thinner but amazeballs. I had it at home after a me vs eye curlers = chopped all my left lashes off, grew from zero to full lash just over a month pic proof just now!
@dilly For arse sake- all the pain for shite results. Bugger. Can’t fathom the sheer frustration. My pathway was lumpectomy full aux clearance then re excision due to unclear margins adjuvant chemo. Can’t help with follow up from mastectomy but can with aux clearance and radiation, my next thing! When you’re ready shout out on here or msg me.
Gutted for you. But stay on this group. Im going nowhere. Stalker.
Yep @lumpybyebye was feeling very deflated when I found out about the lymph nodes. I had a good partial response in my breast tumour, but to my non-medical mind, the lymph nodes are more important because of the risk of spreading. All the misery and slog of chemo side effects, and my lymph node (and its funky looking friends) is sitting there, still fizzing away with cancer!
Anyway, v glad to hear your 6s and 7s are better today!
@tessie86 feeling quite overwhelmed as always with this roller coaster ride as suddenly I’m having surgery in 3 weeks But glad they are not hanging around as I really hate the idea of my still fizzy cancer lymph node sitting there, doing its thing!
@lumpybyebye had to smile a bit at you celebrating a no poo day because I’ve gone the other way so I celebrate when I manage to do a poo.
Fatigue is annoying me. I’m on weekly Paclitaxel so compared to the EC I was on before I don’t get the immediate bad response, but that kind of means I can’t just check out for a few days until I’m over the worst as each day changes. With the EC I went to my dad’s for the night and then my mum did the school run for a few days. Now it’s harder to plan for help as there doesn’t really seem to be a pattern and I also don’t have the feeling fine days before the next dose
Emotions are all over the place too. I think I’m feeling sad, scared and angry but I’m too tired to really feel it.
@dilly sorry to hear that. Sudden changes to the plan are so scary, I feel for you. At least you have a date for surgery and don’t have to wait too long.
I started the weekly paclitaxel last week and have found it similarly hard to EC. I had done lots of reading on here and thought it would be kinder. I saw my oncologist yesterday and what I thought was sore tender skin on my fingertips is probably neuropathy. That started on round 3 of EC which seems unusual. I never got over the fatigue from EC in the so called good week and have been floored and bedridden again for a couple of days on paclitaxel. So my oncologist is reducing the dose for all remaining rounds. I am a bit scared about that as I am TNBC so high risk of recurrence. But at least I might cope with it better. I am having round 2 tomorrow. Fingers crossed I can be a functional human this time.
@orchid2 I think you might have to just lean into support more, even if it means parents doing more than you’d usually want- it is not forever. Don’t plan just have parents on call ready and rest when you can, you are their we girl and they want to help. I am so in awe of all of you that have young families going through this. I’ve a 19yr at Uni and 16yr at home. You can have the full conversations with them, they can help, plus they can cook for themselves. Hubby is handy as well.
I think ive been emotionally numb for months really … just stuck in sarcastic mode. Life wise had a few stinker years but we’ve muddled through so when i got the diagnosis my default was simply ‘of course i bloody do’ and it has kinda stayed that way. Only had one proper melt down but that was Prosecco induced just before surgery. The whole thing still feels a bit surreal.
Kx
@nastynork I also started having mild neuropathy in my fingers on EC. My oncologist said that while it is rare, it’s not unheard of. I guess we were just unlucky
I also didn’t end up having much of a ‘break’ or time to recover in between the EC and Pax as I ended up in hospital with pneumonia and then straight back into it.!
I’ve only had one weekly Pax so far (second one is on Friday) so I’m keeping a close eye on my fingers and toes.
Funnily enough though, I was talking to my BC nurse today after my bloods and she said that people stress about dose reduction because they worry that reoccurrence is more likely, but she said that any good oncologist would only prescribe this if the benefits outweigh the risks of long term side effects.
@poptart I hope you have recovered from your pneumonia and are feeling better. You have a had such a rough ride.
My oncologist was asking me about my pulmonary embolism as I had one in round 1 and ended up in a&e with symptoms again on round 4 butwas nothing serious. Maybe he doesn’t want me on bed rest too much as that increases the risk of clots. I suppose it’s a balance of risks of cancer vs risks of other things and neuropathy.
i had just been trying to catch up on things as had my head in the toilet or under my duvet the past few days.
@dilly i am so sorry for your sudden change of treatment plan any change is a natural worry but surgery date very soon at least they are not hanging around. Now just to prepare for that. Also at least you seem to have a good response in boobie. You’ve got this!
@lumpybyebye my word again another rough cycle but u appear to be the overside now and a no poo day seems well celebrated unfortunately as well i’m the other way i welcome poo days It’s so mad how all our journeys are so different!
@Mairead_49 Hope you’re feeling better and not so urgh! when u hit that wall and wish for all this shit to be other it’s rough! but look how far you’ve come
@orchid2 i have this week just changed to EC with my pembro and i was having weekly paclitax and every three weeks carbo and pembro and i have to say my symptoms with the paclitax would peak about day 3-5 and that would be like fatigue and nausea and i had my first EC Tuesday and it hit me as soon as i got home i was nauseous and floored in bed at 6pm woke up sick as a pig and it hasn’t really gone yet. I’ve woke up feeling slightly better today! but as soon as i woke i’ve had to take my anti-sickness as i feel it in my tummy! What would u say ur peak days with EC were? And defo use ur support of ur parents as much as u can they probably wouldn’t have it any other way.
Also @nastynork i have also had to have dose reductions during my paclitax and my start of EC this week as my neutrophils keep dropping in my boots. Being TNBC to it’s been a real worry for me! but they would prefer a dose reduction than a hospital admission and us being poorly. It’s tough though isn’t it! How many weeks of paclitax have you got?
@poptart i pray ur treatment on friday will be kind!
Also guys one more thing when u all had EC when did u all peak with symptoms and i appreciate we are all different just nice to hear. Hope everyone has a good day
Not been on here for a while, emotions all over the place this time round, thought paclitaxel was supposed to be easier than EC but it’s just different
@dilly sending you lots of love scary to have a change in treatment plan but glad you have a surgery date to work to….we are all here for you, please keep us updated! I’ve got to have another surgery after chemo to clear lymph nodes - I want a date for that as finding only having a couple more appointments quite scary!
@slc1 my peak for EC was day seven when I always crashed and couldn’t really do anything but sleep!
@lumpybyebye thanks for the tip with the lash stuff have ordered! The money we have had to spend on things!
Sending love to all - sorry if I’ve missed anyone! I think my chemo brain is in full action - shopping lists are an absolute must now
@loupy Interesting as that is what i’ve read a few people say! so probs got this for a while longer then as im day 3 and had a rough few days but time will tell!
@nastynork a pulmonary embolism must have been scary. Do you wear compression stockings now as a precaution? I’ve been wearing them, not really because of a PE but more to prevent the neuropathy in my feet as the ones I have are very tight.
Before I was diagnosed with pneumonia they thought my shortness of breath might be a PE. I had a CT scan where they pump the dye through the cannula. Did you have that? Luckily the nurse warned me that it feels like you are wetting yourself (it really does - such a strange sensation!) otherwise I would have been mortified!
@slc1 I was on a dose dense 2 weekly regime for EC.
The first 3-4 days I was completely wired and couldn’t sleep due to the steroids.
Then days 5-10 ish I was just exhausted. Some days it was a struggle to get out of and I kept falling asleep in the chair. I also had a range of other symptoms that came and went during this time (most were mild ish) - bloating/constipation/mild nausea/heartburn & indigestion/sore mouth etc.
Then days 11-13 I felt ok - normal even - and I was able to do things around the house.
So in a two week period, I had about 3 days where I felt ok. It was a bit shit really!
My nausea was well controlled with the medication.
I took all the anti sickness tablets religiously, whether I felt sick or not. I just took them all regardless. I’d read that it’s harder to get nausea under control once it’s started and it’s better to stay on top of it from the start.
I was prescribed:
Ondansetron (1 on day 1 only)
Aprepitant (1 a day for 3 days)
Dexamethasone (steroid - days 2-4. Two at breakfast and two at lunch)
Domperidone (up to 3 times a day)
Filgrastim injections for 7 days (days 3-9)
My BC nurse said no one should suffer that badly with sickness these days on chemo, and if they do, it means the medication isn’t right for them and it needs adjusting. I really hope they can give you something else or tweak your current meds so you feel better. Sickness is utterly miserable and I really hope you feel better x
Nausea is in check and no cold damp chills. Nuts how things can change in 24hrs. Think Nadir has hit the peak and my body is bouncing back. Last week has been shit, lol, (dropped nearly 4kg) but only one more round of Docetaxel b’stard to go. Yee ha.
But glad they are not hanging around as I really hate the idea of my still fizzy cancer lymph node sitting there, doing its thing!
and a no poo day seems well celebrated unfortunately as well i’m the other way 
i welcome poo days 
scary to have a change in treatment plan but glad you have a surgery date to work to….we are all here for you, please keep us updated! I’ve got to have another surgery after chemo to clear lymph nodes - I want a date for that as finding only having a couple more appointments quite scary!
but time will tell!