Hello everyone. Seems we all have a lot to think about gong forward doesn't it. Im still no nearer to getting an answer about the numb thumb, nobody has rung me back! Its so annoying, I have chemo on Monday and need an answer before then! Luckily my feet are feeling ok, just the fingers. I haven't had a sore nose as such, but I did have a couple of small nosebleeds during cycle 1, think this may have signified the neutropenia so keep an eye on things ladies. And as for teeth, this cycle my teeth are really sensitive to cold things, not looking forward to eating the lollies during next chemo, but they do help so I'll have to put up with it. I was told not to see the dentist until well after chemo, so probably not until after xmas for me ( I finish chemo next week), I will ask at next session though to be sure, I would love a check up and a clean, they feel permanently lardy! Ooh that sounds disgusting doesn't it.
Now off to hospital to see surgeon... I'll let you know any interesting outcomes!
@cdc NICE guidelines say surgery is 3-6 weeks after chemo ends -- starting the end of week 3 after last IVs, as I understand it. That will put my week 3 & 4 right on top of Christmas and New Year's Day, both of which fall on Tuesday, and my surgeon only cuts in my hospital on Tuesdays, natch. Plus, there's always the chance that people will go on annual leave at the end of the year. So my nurse and I have already discussed the possibility that I'll have an all-new surgeon do my big procedures. I'm prioritizing getting the surgery done within the ideal window, as waiting longer increases the chance of spread, versus having my lovely surgeon do it. Pragmatism wins the day.
On the other hand, I'll have to have another MRI done before the surgical decisions are made. Because I have to go to another hospital for my MRIs, it always seems to take forever to get the reading of the images -- 2.5 weeks minimum for MRIs #1 & 2. I'm trusting that the surgery guideline will speed up that process, but with the bank holidays I bet I get surgery in the second week of January.
Sorry to be falling down on reading others' posts. Slogged through today and now in temp monitoring mode, as I'm up to 37.2C -- super normal for the general population, but my usual body temp is between 36.0 and 36.4 -- and my digestive tract, esophagus to the end, is feeling uncomfortable. Blergh.
Ow Kip! The nails sound so sore. Hope you manage to hang on to them somehow. Mine are definitely not as sturdy as they were. My feet have really started to feel tender too. Hope tomorrow’s appointment is informative and you can start to plan ahead. I’m in the same boat with regards to needing a further op. I’m nervous too and I’ve already had two surgeries. In many ways they were easier than the chemo but I just feel daunted. Hope you sleep well tonight. Xx
Runny nose has started this evening, blooming nuisance! I've got sore patches inside my nose too, but my sense of smell is enhanced - I refer to it as my new superpower! Nails seems ok, slightly tender, but had that last time and it went away. Need to clip and repaint them tomorrow, I'm keeping them really short, thought that would give them the best chance. Still have eyelashes and eyebrows, though my brows are paler and thinner.
Bizarrely I've had two fillings fall out over the last week. Anyone know how soon after chemo we can brace the dentist?
Hi cdc oh the lard mouth is horrible isnt it. Glad you are still enjoying chocolate tho and relatively tablet free too, its .good feeling isnt it. My eyebrows and lashes have only just gone on cycle 2 but you may be lucky and hang on to them. I think j will lose my thumb nails as removed nail varnish today and have strange semi circles on them and they hurt too. Oh dear not lookjng forward to that.
Its good to hear everyone is doing relatively ok and ticking off the cycles. I shoukd find out more about my next op tomorrow so will know the next step... Bit scared even though ive had surgery already so shouldnt be.
Heres to a good nights sleep for everyone, i coukd use one
Seems we are all eating for England! I can't stop eating junk too. Some how an apple just doesn't cut it, although I am back on the old hula hoop, and back to 10 minutes a day.. and walking the dog too. Although the tiredness is still there. Is anyone suffering with really watery eyes? Im not sure if this is a SE or the fact I have no eyelashes, they just pour all the time. Its really strange this week as its the first time since I began chemo that I haver NO tablets to take, nothing from Monday until Sunday when steroids start again. I keep checking my meds to make sure I'm not missing anything but nothing. The first T I ended up in hospital so had extra antibiotics to take which took me right through til next chemo plus the stuff for the sore mouth and this time my antibiotics finished Sunday, steroids finished last Friday and mouth stuff finished Saturday so nothing to take. I'm sure I'm missing something?
Good luck with the last chemo EM, I can remember reading your post before you started the first one and was really scared... how time flies when you are having fun hey
I'm day 4 of first T(PH), and feeling some true fatigue for the first time, too. Walking to the shops for provisions at midday felt like wading through molasses. Plus, I've got aches and pains, mostly across my back, but also in my thighs. Thankfully, I'm feeling better this afternoon after a decent lunch.
Appetite and taste haven't changed for me (yet), though I was only given 3 days of steroids -- 4 fizzy type, 2x/day, starting day before T -- so fewer steroids, and sudden end of steroids, might explain normal appetite and fatigue hit. (I'm wondering if I wasn't given a taper-off dose of steroids due to liver tests, but it might just be my hospital's default approach. Something to ask at my next onco appointment.)
I can't make up my mind on the feta question. Some sites include it on the list of soft cheeses to avoid, others don't. I've been eating it -- but I've also had febrile neutropenia (cycle 1 FEC) and bad liver tests (cycle 3 FEC), so who knows. I'm trying to track how my body responds when I do eat it, and if it causes a ruckus, I'll cut it out.
Good wishes, all --
Day 6 here and a distinct improvement on last time! I've been tired and achy the last couple of days, but no pain like I had last time and I haven't taken any pain relief. Taste buds are all ok and no runny nose yet.
We we can do this ladies xxx
Hello Ladies, Hope everyone bearing up! Just wanted to let everyone know who is having the dreaded T.. that cycle 2 has been sooo much better than 1.. day 15 today and feel pretty good, tongue back to normal, taste buds back and only side effect really is the painful nails and numb thumb (oh and the tiredness but that seems par for the course for all of us).. so if you are starting T or in the middle of it... hopefully you'll feel better too! One more week and then I have my last one...
Embolorry - good luck with your last one tomorrow.... ring that bell!!!!
So sorry to hear your news Lisa, condolences about your uncle. I dont know much about the gene testing but can imagine its a lot to take in. Sending you big hugs xxxxxxx Kip xx
Oh Lisa. What a sad day. So sorry to hear news of your Uncle’s passing. My condolences. I have had genetic testing but I’m not BRCA 1 or 2 or PALB. It must be such a shock and daunting for you. Have you been offered any more counselling with how to proceed?. Sending huge hugs. I will have to wait till I get the results of my genome analysis to see if there is something going on in my family. I really am thinking of you xxx
Oh thanks Reddi I didn't realise the T coudl cause the watery eyes, I have really noticed my eyesight is worsening too, I think thats a SE of chemo, now will have to get new glasses on top of everything else.
CDC - the hot head which feels cool... I get that too. particularly first week after T. Feels like a hot flush on my head, very strange feeling. Good that you haven't got the nauseau, thats such a relief for you. Do you still have the ilfragstrim injection things? I wondered where the eybrows/eyelashes go, didn't notice any on the pillow? odd! I haven't met the boyfriend yet, don't think I will either... she doesn't want to actually socialise with him out of school.. or maybe she doesn't want him meeting her one eyebrowed, hairy toed, bald mother... can't imagine why!
Its amazing that we are all actuallly coming towards the end or beginning of the end of chemo... wow! I ticked off another day today,.. only 10 days until last blast. Can't believe it.
I still can't get hold of my ONC nurse to discuss the numbness, can only leave a mesage for ONCs secretary, nobody returned my calls as yet! I may have to discuss it with the surgeon, not that he'll know anything about it as its "Oncology based and not surgery".. but not sure who else to try? Oh well haven't played "chase the department" lately, guess I am due another chase around!
I will certainly mention redness if it happens again but so far I’ve not had another incidence and when I went to get my PICC line checked yesterday, the nurse thought it could have been a not flush. I’ve been getting a very sweaty head but it’s cool to the touch. All very bizarre! However, I feel so much better than I did on the AC so far. Virtually no nausea but still taking all the anti-sickness meds just in case. Eyelashes and eyebrows still hanging on in there. I’m still on the waiting list for my local LGFB course so might have to look up some of those YouTube videos myself. Kip your daughter certainly is growing up fast - hope you like her boyfriend! I’m pleased that my DD gets on so well with her friends of both sexes but waiting to see what puberty will bring.
Great you can get on with the TPH and regarding the MRI news “nothing has grown” seems a good way to look at it Reddi. Here’s hoping that the other chemo drugs will have the desired effect. Good luck with th Perjeta and Herceptin then T. I’m thinking of your
Oh KTK, I've definately found 2nd T much easier, pretty much feel back to normal (well whatever my new normal is... more tired, no eyebrows and hairy toes!) , taste buds almost there, made a curry last night and could taste it!!). The kitchen day sounds great, I'll look into that one.
LJ - naproxen - I have had that before, just be careful with your tummy, I had to take omeprazole with mine to prevent ulcers! Glad chemo went to plan.. 1 more to go... yayyyy!
Reddi and all the other ladies with eyebrow advice - I so far have a pencil (posh one from LGFB course) and a litte kit with two colours and a brush.. now off to watch you tube for some tips... funnily enough when I told OH my eyebrows were gone he looked at me and said he hadn't noticed! Kids said I look like a tortoise.. charming hey! I have terribly watery eyes today though, must be severe lack of eyelashes.
CDC - hope T is treating you kindly.!!
@Kip Your left eyebrow story gave me a huge smile! If you're looking for advice on switching from eyebrow pencil to powder, Look Good, Feel Better has a good video about using eyebrow powder, IIRC.
I recently had a moment like that when I realized that my part is now, oh, 4 inches wide. When did that happen? No idea. My OH hilariously encouraged me earlier this week to blow off shaving my head and just keep what's left of my DIY pixie while we wait to see if anything grows back with the start of TPH. His encourgement: noting that the 3-5 strands above my ears provide a "suggestion" of hair when I wear my beanies, then suddenly worrying if he upset me by labeling these surviving strands as "suggestions," rather than real hair. Cracked me up.
@LJ In the US, Naxopren is often taken for bone joint pain, as well as pre-menstrual pain; it's available without a prescription. It can be very, very effective in my experience. (In fact, I find it makes me feel a bit loopy/dizzy, so I tend to prefer paracetamol or ibuprofen.) Have fun knitting! And so envious of your neutrophils / bone marrow!
@KellP Such nice news from your scan. Congratulations!
@Shi Thank you! I am very optimistic about the switch to TPH -- that lil cocktail is powerful stuff, perfectly calibrated to shrink up my right side. And my left side is a mucinous lesion, so it's not likely to spread anywhere anytime soon. Just had thought it felt smaller. Power of positive thinking sometimes makes me into a Pollyana. (Do people on this side of the Atlantic know Pollyana?)
@ktk How was Life Kitchen? I really enjoyed my workshop -- and, inspired by your mention, I made the harissa salmon with fennel salad recipe for my supper tonight. (Second time I've done it at home.) So easy and yummy.
Still have more catch-ups to do, but got caught up in marathon chat with my parents, who are bunkering down in Virginia in advance of hurricane Florence. (They may get some high winds and lots of rain, but they're far from the current expected landfall.) Now, need to hit the hay for early chemo tomorrow. Should have lots of spare time tomorrow to see what else I've missed in the past few days -- xoxo all.