Hello all,
A mixed day here at the hospital!
My antibiotics have ceased, as the infection is gone. ???
Went for a chest scan today and they found a blood clot on my lungs. ?
So in a nutshell, they will start blood thinning drugs later this evening, and test blood again tomorrow. If the platelets are ok, I can go home ?.
All a bit of a whirlwind if I’m honest!!
chemo has been delayed for a week, which I am very pleased about… I need to get my breath back!!
Love to all!
Georgie Gee 
Hurrah, Georgie! Those super-special antibiotics are amazing. Fingers crossed for your platelets.
Thanks, Jay68! I’m on TPH, too, and this is my first cycle post 3 of FEC. I have been drinking at least 2 liters of water a day, plus tea, juice, etc., on top. Strangely, I have had no mouth sore or slime issues and very minimal taste issues (really taste the metal of utensils) – and have been eating my usual diet as a result, which involves salads and soup and falafel and baked salmon and yogurt and fruit and roasted and raw veg (all scrubbed very thoroughly with anything the least bit suspect thrown out), plus the occasional biscuit or slice of rye bread. And as it happens, yesterday was my first unhealthy food day on T: well-done cheeseburger with sauteed onions and mushrooms. I’d been craving one for 3 weeks, but I didn’t enjoy it at all, even though it tasted like a cheeseburger should taste. Probably shifted too far in the other direction. Oh, well.
Guess I’ll know for future cycles that this is likely to happen.
Night night, all – had good obs and hooked up to an 8-hour saline bag, so time for me to sleep.
First TPH was 13 Sep (PH) and 14 Sep (T). Day 13 for me of T. I was so excited to be nearly out of my WBC trough, too, without febrile neutropenia (FEC 1) or mystery swelling, pain, and redness in my cannula arm (cellulitis? they don’t know; FEC 3) while, of course, neutropenic. C’est la vie.
Now really going to sleep!
Hi
Georgie Gee - sorry to hear you haven’t managed to escape you but hopefully you will soon and good news the infection has gone.
Reddi - now you are joining the Casa NHS sleepover too… oh dear, hope you got those 8 hours sleep in the end and are now rehydrated. Thankfully I have not had the diarrohea throughout chemo, just get constipation for first week on the T (steroids I think) so lots of lactulose for me.
I’m now on day 4 of last cycle of T and the mouth is starting to get lardy, so onto Fluconazole today to combat that hopefully, although my GP managed to prescribe me 8 weeks worth yesterday instead of 10 days… its either all or nothing with them! I’ve had 2 injections so far, and thats going ok, although still dislike doing it and still having the useless nights sleep, last steroids tomorrow though so probably have the downer days at the weekend too. I’ve managed to track down my ONC nurse too and she can’t arrange the planning for rads until after surgery, results and checkup (even though the surgeon asked me to get it sorted now) so will probably find my rads fall over Xmas too! Grrrrr…
Another beautiful sunny day here in Suffolk, although I think it may be the last. Although I am looking forward to some cooler evenings as suffering hot flushes too, and also treated ourselves to a lovely woodburner stove and can’t wait to get it burning, though with the hot flushes I might regret it and have to have the window open too!
Take care all
Kip
xxx
@Jay68 I have not had surgery yet – other than bilateral SLNB, that is. Really hoping the PH portion of TPH shrinks up the HER2+ side, though I may still be looking at mastectomy for it. Other side is HER2- and mucinous, so should be lumpectomy.
Not sure that I will be released today. Had diarrhea overnight (and the 4am bout required calling the nurse for gown change and hazmat clean-up. UGH. On the brighter side, it’s been 3 hours since my last episode, so maybe things are settling down.
Feel bad for my neighbors, who would have heard it all if they were aeake overnight. I say this as there is someone nearby who was up all night vomiting. I feel lucky in comparison.
@Kip 8 weeks! Hilarious. A woodburning stove sounds so cozy. I would love to have one if we ever flee our flat in London. But for today, enjoy the lovely, sunny day. Gorgeous here.
If you didn’t catch the moon last night, I suggest trying to do so this evening. Gloriously beautiful. My east-facing room had an amazing view in early evening, and then quite a brilliant sunrise.
@Lisa Marie Have you had your oncologist or chemo hotline team take a look at your hand? I think you should. Even if it turns out to be a minor side effect, it will ease your mind. But that could be something requiring medical attention.
@cdc Relish the switch to paclitaxel! I was half hoping my diarrhea was bad enough that they’d switch me, too. But no.
Instead, I’ll be getting a prescription for codeine and something else to back me up (now and in future cycles). Juggling the fight against constipation and then the switch to encouraging (pseudo) constipation is gonna be fun! Man, I do not like docetaxel.
They have checked the arm and hand out just before I had the chemo. When just swollen and red marks on fingers. Said my be phlebitis but more than likely down to chemo treatment effects on my veins. Had Doppler scans and got steroid and pain creams. Not shown them bruised bit on hand as that I presuming is from the cannula in the vein but spred a little further down hand xx
Hi ladies
Looks like nearly every one has been in the wars. My hair has started to really thin on top the last week but I’m sticking with the cold cap cos it promotes regrowth and after 12 rounds seems silly to give it up for the last 4. I do have a bit of regrowth where it’s thinner on top and I can still do a comb over 
A word of caution on the paclitaxel. Although it’s less harsh there may still be diarrhoea / feet issues. I have diarrhoea pretty much daily although diabetes meds and clexane injections contribute to that. It’s not all day every day though. Tends to be 1st thing then it passes. I have developed very sore feet in the last week as well which I’m having to moistu rise 2 or 3 times a day. The skin is also peeling off them and they are pretty red in areas. I’ll mention it to my oncologist when I see him next week. I sleep with them sticking out the bed because they are most comfortable when they are cool. I need to buy an extra pair of slippers to wear at work as well. I’ve been wearing my sketchers which are the most comfortable shoes I hae but they still ache.
Thanks again, @Jay68. The stuff I’ve read about the HER2 drugs is very encouraging – and your story amplifies that. I will go through all sorts of diarrhea to get my 4 rounds of PH. Too bad it has to come with the T. Though of course, it may be the trio that makes it so effective.
The oncologist I saw last night was pretty sure it was chemo-induced, but I had had so many “episodes” in such a short window of time that he wanted me to be admitted overnight if only to get 2 big bags of saline in me. Bloods are good – for once, I wasn’t neutropenic when presenting with worrying symptoms – so I am getting an Rx for codeine and prn loperamide. I hate codeine, but it seems to be working thus far. Plus, because it has been prescribed, I learned that my ALT liver enzyme levels have fully resolved.
Dietician advised that I cut back on fruit, veg, and fiber. Root veg, especially boiled or parboiled and roasted, should be okay. Apples with skin removed (to reduce fiber) are okay, too. It’s going to be a big adjustment in our diet, but at least the autumn is upon us: there will be stew. (Though I’ll need to research fiber levels in my 2 fave stew bases – pearl barley and lentils.)
Just waiting for the pharmacy to delivery my drugs and then I am discharged home. Hurrah!
@Lisa Marie So hard to know what needs tending to between appointments. I think you said you were trying to avoid a PICC line – is that right? It might be that the vein has collapsed and they’ll need to use another spot or do a PICC for you. If the bruising clears before your next appointment, I’d say show the photo to your doctor, just in case.
Hi reddi. Not avoiding a PICC line they said it just not worth it as I only have 1 more cycle of chemo scheduled for 10th October then I start radiation treatment. Wish they had done one from the start though tbh as had nothing but issues since the first chemo with that arm. It’s not worth fitting a line now but as you say I think the veins are collapsing and other issue in my right arm. Hopefully they can be resolved afterwards and are not permanent. As dints and limited moments and bruises not a great thing xx
P.s got spontaneous bowel moments too on the T. Thought it was just me and ibs related as not eating properly because of not tasting things. Soluble fiber is best for diarrhea where as insoluble fiber is for constipation. There is a list on which fruits and veg contain which xx
Thanks for the 2 fibers tip, Lisa Marie!That will make my research so much easier.
For my most recent chemo, we used a different hand vein as I’d had problems in the previous cycle. I hope they have a vein whisperer in your chemo unit.
Yay for lentils and pearl barley. Boo, however, to my constitution, as I actually had oatmeal several times in the lead-up to my D-Day.
Lisa Marie The shark bite looking arm as veins collapse is something a few of us had, get a microwaveable heat pad and rub a bit of ibruprofen on too, my veins are recovering and my last chemo was January, I also still have the red line from the chemo, this is fading. Everyone is different and arms etc recover at different rates. Anyway, I hope you are going to go for some louboutins as your shoes, you blooming deserve them ???
Shi xx
Well, with six days to go until my last T, I have finally had a good day!!! Apart from the fantastic weather, I actually had enough energy to enjoy the day! I popped into school to take the cakes I made for their Macmillan coffee morning, then met a few friends for a long lunch. When everyone else had gone I went out with the host and take took her dog for a walk. I warned her that I would be slow and couldn’t walk far, but we did a really decent up and down walk through the lanes for over an hour! I felt fantastic ?
So today I have my rads planning meeting. Moving on to the final stage. Hopefully it will be over by Christmas.
Love to all. Kx
Hi there,
KTK glad you enjoyed your walk… makes your feel good doesn’t it. I managed about 4 miles yesterday… but was so exhausted last night but then couldn’t sleep… thankfully last steroids today!
Lisa Marie - I always get a bruise round the vein where chemo has been given and it goes after a while but somedays I it aches and feels sore, but as you say only 1 more to go so hopefully you will get through that one and then it can all resolve itself. My thumb is still numb but not quite so tingly I think, I could manage with it if it gets no worse though. How are you getting on with all you decisions, hopefully you are putting them to one side and dealing with them later? How’s the hair too? Mines looking fluffy and white still but definately growing, even think I have a few eyebrows today, no eyelashes though and still look like a boiled egg!
CDC - How are you doing today?
After reading the posts about “stews” I really fancy one now… unfortuanately my family hate a stew,I absolutely love one though, they also hate puddings… crazy lot! So yesterday I made a whole apple pie to myself… no wonder I am getting fatter…I hate seeing my lovely cooking apples going to waste!
Hope the diarrohea clears up for your all…and also thanks for the lovely positive posts, can’t wait to be tasting everything again… bring on that cheese board!
Take care
Kip
xx