@cdc I have 3 more TPH, which – if there are no more delays – puts my last infusion day on Friday, 16 November, with official end of chemotherapy in early December. Then I have surgery on my breasts (only SLNB thus far) and hormone therapy; possibly/probably radiotherapy depending on the specific surgeries and tissue results. So for me end of chemo is phase 1 of a continuing journey.
I was briefly bummed when the delay pushed my end of chemo date off American Thanksgiving (just too perfect, really), and then extended it past my 10th wedding anniversary, but we’ll still celebrate both and now get a 3rd day of celebration.
And on that note, just heard from my BC nurse that the full report from my mid chemo MRI does show tumor response – not huge response, but something. Nice to have a little nice news to counter the T and GCSF injection aches.
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!
Hi all, well another wonderful visit to hospital. Appointment should have been at 10.30 didn’t get called until 12 o’clock. Its always running behind in there, its chaos. Found out my original surgeon has left and gone to Kings, so have another surgeon, but don’t know who to perform the ANC. Was advised to have the clearance, just level 1 of the lymph nodes, the surgeon I saw (not the same one who will be performing the surgery!!) said that she is not expecting to find anything in the nodes but its precautionary and preferred to having radiptherapy to kill them as it leaves radiotherapy as an option should I need it in the future on the arnmpit area. So 23rd Oct will be surgery, hopefully day surgery again, then 3-4 weeks later start 3 weeks of rads! She suggested mentionining at next chemo that my surgery is booked and follow up apponitment booked for 8th November so that they can book my planning appointment for the rads so it hopefully gets fitted in before xmas.
Unfortuantey because they were running so late I didn’t get chance to ask half my questions, so no clearer on genes or follow up MRI versus mammogram. So will have to ask them at the next appointment. Also chased up my appointmeent for prosthesis and was told I have to contact them for an appointment, butw as told to leave it until after rads as you can’t were it during the course of rads or for a while after in case skin is sore, so knitted knocker it is! She also noticed my watery eyes and said to try not to wipe them with a tissue as this makes them saw but to “leave them to run” - easy for her to say!
I have been for my pre-T consultation, and came out with some interesting information about a nail cream that has been trialled which is said to greatly reduce nail damage with T chemo.
On the August thread, I have been writing about it, as there were some ladies involved in the trial in my area.
I was wondering whether anyone this thread or previous (am writing on several…) had used this or not. I have included this link.
Hope everyone is ok. I’ve just had a nice row on the train with a man blocking 4 priority seats with his bike. He asked where he should put it and I’m just about enough of a lady not to tell him.
Chased up my complaint today as the 3 months during which time I should receive the final report is up and I’ve not had it. Also asked for a copy of the clinic letter from my 2 week wait referral in march 2016 as neither I not me gp ever received a copy. They attached it and the information is all wrong. The said I went cos I felt changed under the previous surgery scar. I didn’t. It was above the scar where the ILC was found. I’ve just replied telling them that.
Maybe if they’d have listened it would have been caught nearly 2 years earlier.
Reddi - I always wear my knitted knocker in the pocket of my bra so it doesn’t rub anyway but if , during rads its uncomfy it won’t matter too much as I am so small on the other side, can probably wear a vest! I think its too late for my nails with one chemo to go but am still waiting to hear back from ONC regarding the numb thumb, have just left another mesage… its so annoying. If I end up having a full dose of T on Monday and have permanent loss of feeling in the future I won’t be happy!
CDC - not sure what I’ll be doing inbetween chemo and op but hoping to have a mini celebration at finishing chemo. I’ve now developed a strange looking patch on my face, its looking slightly raised and scabby but not sore, now panicking I’ve got skin cancer! but trying to remain calm as its only been there a couple of days! Hubby thinks it may be impetigo or ringworm… am keeping an eye on it and will ask at chemo on Monday if its no better… one thing after another. Doesn’t help I keep feeling it I guess.
Typical… just got a phone call from ONC’s secretary… apparently she has reminded the Oncologist twice this week and again last night and I am “on her list of things to look at” but she will remind her again and it may be a case of I won’t know if dose adjusted until I get there on Monday! I really wanted to know what the implications are of lowering the dose, don’t want to risk the C coming back if they lower it? Anyone else had this?
Oh Poor your Reddi, that sounds terrible. and made me squeeze my bum cheeks somewhat :smileywink: Hope all the creams and stuff work, I was told to use Lactulose for the constipation with the T, it really did help, took a big slug before bedtimes. It took a couple of days to get things moving! but only needed to take it for a few days and then all back to normal. I get that everytime with chemo, never had the diarrohea part (probably just jinxed the next one and will living in the loo).
Thanks for the info regarding cutting does of chemo, I guess the ONCs know what they are doing and I did read something that in USA (I think thats right) they often only use 2 x FEC and 2 x T as opposed to standard 6 here, so must be something in it. The only trouble with having had surgery first before chemo is I’ll never know if its working as can’t measure how much the lump would have shrunk. I guess if all nodes clear then I’ll know its gone from there, although won’t know if they had it in the first place unless it leaves some scarring which the surgeon sometimes happens but not always. Oh well as long as they are clear thats the main thing.
Its good to hear that yours is reacting to the chemo… thats good news!
Kip mention to your team before your next infusion and explain no ones got back to you, someone needs to make considered decision before you get next one so you don’t get any permanent damage. Reddi, anosol and slap it on, it will help ??Shi xx
Hi, udderly smooth with extra urea from Amazon is a good cream for skin, a little gem that tatyana passed onto a lot of us and works really well. If any of you need expert bum buttering tips, meesh from my oct17 Chemo thread thread is the queen of bum buttering tips, so ask away ???Shi xx
Morning Ladies, sorry been a bit quiet had a lot going on in my head. After a rough day had session 5/6 on Wednesday cycle 2 of T so 5 down 1 more to go on 10th 0ctober. Have been referred to radiation treatment and awaiting a letter, 4-6 weeks after chemo ends is the estimated date and then 3 weeks on radiation so should be done with this stage at least before Christmas ???. Decided to get all this treatment out the way and make further surgery decisions or monitoring after it’s done, as the can’t do anything while on treatment and I’m tired and want a couple of weeks feeling normal and heads not in right position to think. Ideally I would like the wedding before mastectomy/reconstruction and or ovary removal is possible as it’s major surgery. Not sure yet if that’s the way to go as I still have frozen eggs to consider among other things. They nearly didn’t do session 5 as right arm/hand is swollen and have blister/ red mark across bottom of fingers. Will post photo in a mo to see if anyone else having same, had to have doctor look at it before and he said chemo treatment effecting it and only way to stop is not faffing with veins, and not willing to do that with so little treatments left. Feeling ok just finished steroids so emotional, eyelash falling out and tired but ok for now. Thank you all for sending your love and support, it means so much to me. What I thought would be over for Christmas and with regular check ups has turned into a nightmare and the new year will face even more challenges including telling which ever side of the family that the gene is there and the decisions on how to proceed with my own treatment. I hope your journeys are progressing on a more positive note and not too may side effects. Looking forward to spending the weekend in the arms of the man I love and getting cuddles from his 3 wonderful children, it’s the little things that keep you relatively sain. Much love to you all ? xx
Sorry to hear things are difficult at the moment. You have a lot to think about. I think you are right to concentrate on getting through the treatment and then making those decisions. Its difficult to think straight when you feel rough from chemo isn’t it. At least your wedding will be something positive and exciting to look forward to. Your hands do look sore, I haven’t had redness but a numb thumb and tinglyness. Do they always adminster your chemo from the veins on the back of your hands? Sometimes my nurse uses the vein on the side below my thumb, that might be an option? On the positive, you nails look lovely! Like the polish. Mine is always getting chipped and bashed about.
Hopefully T No. 2 will be kinder to you, you deserve a break from teh awful SEs, I found No. 2 to be so much better. Just hope No. 3 will be as kind. Back on the steroids on Sunday, so expecting the tears and fears to be back again.
Enjoy those cuddles with the loved ones at the weekend…take care of yourself, don’t be hard on yourself, you’ve got lots to consider and thats not easy, take your time, you’ll make the right decisions in the end and we will all be right here to offer support all the way!
Morning all. Just been catching up. T2 has not been as bad I am pleased to say! However I am incredibly tired. A short trip out finishes me for they day. The good news is I seem to be sleeping better. I’ve kept on top of my bowels this time so no constipation and no diarrhoea ?. Also haemorrhoids have shrunk so not so much discomfort. I use Proctosedyl as I had an allergic reaction to anusol which was very unpleasant.
My daughter returned to uni yesterday and my son is leaving for his first year tomorrow ?. I have not been on top of helping him get ready as much as I should have been and I feel so guilty. He will be so far away and I feel so useless. It has been lovely having them both close to me all summer and I will miss them so much. Kxx
Oh KTK, can’t imagine my children leaving home for Uni, must be hard at the best of times. I get how you feel about feeling guilty regarding helping your son get ready for Uni. I have had so much guilt over the last few months, my son especially has had to deal with GCSES, picking a college, picking a course, receiving his results, Prom night all whilst I have been going through all of this nightmare. I feel I haven’t been able to enjoy or help him with any of these things, but they still amaze us and seem to deal with it all. Don’t feel guilty you have done as much as you could and I am sure your son is fine with it. I think we worry more than they do!
Glad to hear T2 is treating you more kindly. From about day 12/13 I have felt pretty normal again, feel great this week, taste buds back no more lard mouth… so will be very sad to say goodbye to them again next week but at least I know they will return. Im making the most of taste buds, eating everything in sight, chocolate actually tastes nice again, so making the most of that and have to say, so glad I haven’t suffered with the piles…sounds awful!
Morning Kip,they did use the side veins under thumb and little finger for the first 2 then for last 3 the back of the hand. Twice near thumb hence the dint and then last one where the bruise is. Nails are chipping on the blackjack polish and only did them at the weekend, best ones I found which I used on all other treatments is Rimmel super gel with top coat. Lasted the full cycle with no chips, just had to do it again because of re growth. Thank you, I’m going to take my time it’s a big decision with many factors and I need to make the right decisions. Plus if can manage wedding this year I would like to do it with my own boobs ? xx
Lisa Marie - Thanks for the info re nail varnish, mine tends to be whatever I can scrape together in my 13 year old’s bedroom! No wonder yours look so nice! Seems they are using every vein possible for you, I had the same problem when I was in hospital but so far chemo nurses have been ace at getting needles in. I do get sore forearm sometimes though, our poor bodies hey.
I fully understand… your wedding…your boobs… don’t blame you! You’ll get there!!!
Oh and just watched your post on FB - the children singing to their teacher… OMG… sobbed my little heart out… how beautiful.
Come on CDC, you didn’t really expect T to go to plan did you?!!! If it can go wrong it will it seems, probably because you are such a super sensitive soul. Really though I am so sorry that you are suffering another setback. I hope they get it sorted. Just tell everyone that not only have you got BC you also are blessed with Foot and Mouth ?
Car packed ?. I’ve spent the afternoon cooking enough spag Bol sauce and chicken curry to last him until Christmas. Just hope there is room in the car for it!!
Oh CDC, you poor thing… but better to be safe with the weekly stuff than suffer with hand/foot problems, never heard of that one. Are they sore? Haven’t really looked at my feet much, better have an explore of them tonight!
KTK - at least he isn’t going to starve in the near future! Bless him, home cooked food… you can’t beat it… especially if someone else has cooked it!
Taxol number 8 crossed off the list (so 12 chemo cycles in total) 46 more to go and I’m done.
Interesting info on the plantar thing. My hands are completely fine but my feet do get very dry and a bit stiff, however that predates the chemo and hasn’t got any worse. For me I think it’s all about the diabetes. I do have a specific urea cream I bought for diabetics I put on nightly before bed which helps. I also convinced my husband ages ago that being dietician it was essential that I had good circulation in my feet (yay for the hairy toes) and thus he rubs cream in and gives me a really nice foot massage at least once a week. It certainly makes me feel better and makes him heel useful, bless.
Cdc, if you are going on to Taxol I’d pretty guarantee you’ll feel completely fine. There are several of us on my unit, and a few that have finished, and none of us have had anything bar extremely minimal side effects. No meds to take home after. No injections. No nothing, just on the day and home till the next one with one full blood yet every three weeks and just a full blood count taken an hour before chemo on the 2 weeks in between. Y
and makes him heel useful, bless.