Starting chemo August 2017 - would love some moral support!

Cherry-sw

KByTheLake, I had to google kettlebells, now I know what you mean, so you are enjoying working out with them, hah? My dumbbells are, I actually had to go and verify it, 3 kg each and it is enough for me, have not been using them lately, my PT says that I overworked my back trying to get rid of my back pain so from now on it must be more stretching exercises and occasionally rolling over foam roller.

I have not been in the mood for posting because I was waiting for my bone scan and then the results. I have been having this upper back pain that started about two weeks after my diagnosis and all my doctors kept telling me that it was muscular but it did not go away and back in September I was offered a scan but they told me that they were not worried it was just to calm me down. Two weeks I decided to do it and last Friday I went to the clinic nearly in a catatonic state and while laying on this brits thinking how am I suppose to wait until Monday. When it was over the tech just came out of the room, he was originally from Iraq, and just said you can relax now it looks good. I went on hugging him which he took with grace. This is one of the parts I hate about this bc, the constant worry over every ache and pain. My PT was also relived and said now when I know that everything is fine I can work with your back a bit harder otherwise you passed your worries on me. Yesterday I got it confirmed by the clinic too. I have been doing some cooking, watching the Tudors for the sake of Henry Cavill, the Superman, contemplating about going to the cinema to see Justice League but he is not in the first part so I decided not to. I have been walking too, still am very bloated, the nurse said it was due to Taxol, it can cause swelling. I had a preparation meeting with my nurse, we went through all the meds I am supposed to take and what to do in case of any symptoms or side effects, I really hope we did not miss anything. My blood work is still low, my hemoglobin is 107 when it is supposed to be 140 so more liver and blood pudding for me. The nurse also said that Taxol can cause the drop in hemoglobin weeks after treatment is over. I am a bit scared but aren't we all.

Paulette, I sent you a message on FB.

PauletteK

Cherry - good to hear all these good news from you, I know you have been worried about your back, so happy to hear things are good. I do a lot of stretching exercises from my PT at home so my left arm is not that much pains now. Also my arm can stretch easily while I do radiation.

I haven’t been posting as much as I was before, finally I got some energy I can go around a little bit and taking my daily walks. I still have my hot flashes at night and neuropathy also. I do think my hands and feet will get better soon. Be positive.

Happy thanksgiving to everyone and I’m so glad to meet all of you when I was down in the gutter. I hope everyone have a wonderful time with your family.

Neanie44

Happy Thanksgiving to all of you and hope you were able to enjoy. Thank heavens my last treatment is today so I was able to enjoy yesterday like a semi normal day. I feel like I should be happy today, but I'm a mix of emotions. Went to see my MO on Wednesday and at the end of the visit he stated he would put me on meds after radiation, which I knew, but then he said.. If you can tolerate it good, but if not we'll stop it because it's not going to help much anyway because of the tumor being so aggressive. So, now I want to cry and scream because it's almost like what did I do all this for??!! I know there's never any guarantee on recurring but I feel like I wasnt even allowed to enjoy being done with one phase before he basically threw his hands up in the air and said.. I've done all I can do. Am I wrong? Just feel like I've been slapped in the face for the 3rd time and it feels crappy.

VL22

you’re MO is an idiot. Seriously, I’d change. Even though your TN, you’re Grade 1. I’m TN and grade 3 and with treatment I have a 85% chance of never dealing with this again. His lack of knowledge and decency is appalling. Please don’t let this wreck your being done with chemo and trying to move on

rdeesides

What medication was he offering? Just asking because triple negatives don’t usually have that option. I agree with VL22, your MO is an idiot and also has the sensitivity of a log

VL22

rdeesides - probably Xeloda.

Cherry-sw

NewNormal44, your tumor was aggressive and it is now gone, the probability that you do not need any further treatment is very high. I met three oncologists before I settled for the third one but even the first one, who I did not like because he was detached and disengaged, told me that of ten women one would recur no matter treatment, seven would not need any and for two the treatment would make a difference. They just do not know who would need it and who would not and therefore treat everybody. Your chances are good, your tumor is small and the nodes are clear. Get the second opinion, see what other doctors have to say. Do not let it to poison your mind, he probably did not mean it but sometimes these doctors need to take a social competence and empathy class, hugs, Cherry

PauletteK

New normal - I have to agree with all the ladies, your MO has no EQ, he shouldn't talk to you this way. Our attitude toward our BC is very important, we should always have hopes. All the numbers are just number, he is not God, he doesn't know who will have recurrence or not. You are only stage 1, he should never talk to you this way.

2 weeks post chemo, my appetite is almost back to normal, taste buds is getting better, energy is slowly getting better each day, Neuropathy also slowly getting better but still numb.

Blair2

Some doctors just have their egos above anyone/anything else, and become aloof and derogatory with their attitude toward their patients. It’s the ones that can uphold a genuine personal care that are best. What I see happening with so many of them is they are “playing safe” with their comments. “It’s not my fault”, “I never said that”, attitude. In the case of all of our chance of recurrence, nobody has a crystal ball to predict, but to use a nonchalant comment destroying a patient’s hope is totally unnecessary. They are only thinking of themselves when they make stupid comments and think we are too nieve to pick up on it.

Binniebin

new normal, ditch the dr and get a real one ie one that has empathy, communication skills, and is an expert in breast cancer. Try and regain your sense of hope that the treatment you have had and will have is effective against your 1cm, node negative, and grade 1 breast cancer. You will have a risk, but you're not in the high risk category

I'm wondering who may have experienced late bone pain from neulasta. I had my 1st neulasta 7 days ago 24 hoursafter 2nd AC. I experienced some mild aching when inactive. Today I have a throbbing pain essentially lower spine and upper thighs. Early in the day also clavicle and sternum. My liver function ( pre BC issue with no known cause) went way higher from the AC and antibiotics in hospital for febrile neutropenia post first AC, so I didn't take Loratadine to try and reduce what my liver has to handle.

Neanie44

Thanks ladies for your support. I am been in a "mood" lately, so been very low key. Instead of being joyous in spite of the pain, I have been crying at will. Yes, I think I may indeed get a 2nd opinion. I discussed it with my boss as he is a MO as well - in fact my MO trained under him. What he explained is that he will be putting me on Arimidex, but because the benefit will not be that great, if the side effects affect my quality of life, I can make the decision to discontinue.

Redeesides: He is not classifying as TNBC because my ER was less than 20%, but he sure seems to be treating it that way. The 1st path report by a different dr did classify it a TNBC, but I'm told that is subjective to the dr. Doesn't make me feel better.

I agree with all of you that they need some type of empathy course. After discussion with my husband, he also mentioned that he detected that he is delivery was not the best early on, but since I was referred to him by my boss, I held him to a higher standard.

Again, Thanks so much ladies.

Blair2

Newnormal - my sister was on Arimedix for 5 years and had no side effects from it. She had a pre-cancerous condition and she’s been cancer free for over 15 years. Not sure how it works for a TN situation, but don’t fear the drug if that’s what you end up getting. I think it’s safer if you have heart conditions as opposed to using Tomoxifen

sweetp6217

Hello all and I hope that your infusions, treatments and side-effects are going well and/or non-existent. Early Thanksgiving morning was a bit rough and I found out how hard it could be to try to use that late night online doctor visit app. After filling out seemingly endless questionaires, I gave up and bit the bullet. Got my crappy SE down to size around 1 PM and managed to scrape myself up and go to work the next day. Now, it's a distant memory and I gained back what I lost that day and will be picking up a couple of pies from Baker's Square later today. I don't bake well but I'm planning on a belated Thanksgiving, small scale.

Friday, I'll see my surgeon to see what's what. The MRI came back and it looks like nothing is in the nodes and maybe just a little tissue or something on the main sight, so I'm thinking positively. I'm done with the chemo, but continuing on with just herceptin every 3 weeks; we'll see about rads.

Anyway, good luck and best wishes to you all.

P.S. About the only soda I can stand these days (used to love Dr. Pepper) is caffeine free Coke. I switched to that when Ginger ale didn't do it for me.

PauletteK

SweetP - woot woot ! You finished chemo !!! Life will be better from here. I’m waiting for my radiation start date, to be honest I’m a little nervous. Enjoy the days after SE. from now on things are getting better.

Neanie44

Blair 2, Thanks so much for the reassurance on the medication and Binniebin, I realize everything you are saying in regards to the risk might be well on target, but after being knocked down, by being told that the tumor was just a cyst, then assured that all I would need would be radiation, then to be told my oncotype score returned and was 44 -Whoop - change of plans! I think I have a reason to feel like I am waiting on the bomb to drop yet again.

SweetP Yay for you!!! The only thing that makes me feel better about all of this is that, once I start to recover, no more Chemo. Today, I am just gaining some energy back and trying not to over do. I am also awaiting my radiation start date. I am a "next" person, so I, like PauletteK will be searching the 'what's next' on the agenda.

Let's all hope for a better Christmas.

PauletteK

NewNormal - enjoy the days we don’t have to do chemo and wait for the radiation start day. Have you do your mapping yet?

Blair2

Newnormal - I exactly felt the same with surprises of everything getting worse. From being told i was going to most likely need just radiation and hormone therapy. Told I’d have perky ta tas (bs’s term)which are now slightly deformed (didn’t care if they were off at my age), so hoping the radiation will flatten the beat up side. If I had known it wasn’t that easy to match the dang things, I wouldn’t have agreed. Little perturbed at bs. Ps did his best to save the nipple, but it’s smaller. Then learning I went from grade 2 to 3 after surgery with another discovery of a precancerous spot on my right breast after it was examined in its removed tissue (for reduction). I’m suppose to be all clear now - BUT. Then the result of Oncotype test. So now I wonder if I should have had a mastectomy, but they claim the recurrence isn’t any more of a threat. Radiation is bound to make the beat up side become worse and I have to question - why all this talk of perky ta tas? Ridiculous. However, they do look fine under clothes and maybe I’m just being too picky. I do like being smaller.Just don’t let me have another mammo telling me it’s back in the future, or I’ll really scream at these ta tas.

Willow22

newnormal - I'm totally understand your frustration about how things keep changing, and it's always for the worst. I think that is often the way this diagnosis goes --- my neice, who's been there thru her grandma's battles with BC tried to gently tell me this with "I hope your path report comes back consistent with your biopsy"-- - they really don't know anything for sure until they get a surgical path report back on the entire tumor, and even then info keeps coming in SLOWLY which drove me absolutely nuts. My hubby says I'm a "worse case scenario" person, but if I can understand and be prepared for the worst, then I know I'm ready to deal with any situation and can be at peace. It's hard to do that when they talk about biopsy results etc as absolutes instead of pending confirmation. So at the postop appt when we got the lengthy path report showing 2 IDC, grade 3 - my husband was shell shocked (we were told it was only DCIS) whereas I expected bad news based on cutting out a sig larger area during surgery, and was actually relieved because I was so worried the nodes were going to be positive.

I need to add a couple comments about your MO's ridiculous comment.... It's odd that he would say taking meds may not be effective because the tumor is "aggressive", when your path report came back at grade 1 (which is the least aggressive stage). On the other hand, the meds may not be as effective for you because it sounds like the tumor is just weakly estrogen positive. I'm in a similiar situation - my DCIS was ER negative, but the IDC came back ER positive. The first MO we saw ordered an oncotype test, which came back at 43. I freaked big time, but had a great conversation about it with the second MO I saw (really liked her and chose her for treatment). She said that of course the oncotype was going to come back high (and she said doing it was a waste of money for my situation).... the results show a high likelihood of recurrence with just hormonal therapy, but since my tumor is so weakly estrogen positive at 7%, she already knew hormone therapy wouldn't have much if any impact on my cancer. My SIL works with an internationally known breast cancer researcher, who said that hormonal therapy is usually only given for ER + values of 10% or higher. My MO and RO have both said that my 5 year survival rate following surgery, chemo and radiation is 98%. My tumor is smaller than yours, but we have a lot of similarities... you might consider asking your MO what your recurrence rate or survival rate is with and without the medication to see how much it changes your outlook.

paulette - radiation has been a piece of cake, so relax and know that the hard part of chemo is behind you! I was nowhere near as tired during radiation as I was during chemo. I had skin color changes (kind of red/brown which is already starting to go away) and only a little bit of skin irritation/discomfort at the very end (in my armpit). I used aloe from my kitchen plant, plus good lotion (jergens ultra healing in am and eucerin cream at night), hydrocortisone cream when I was itchy (check that it doesn't have any aluminum in it, because that can be irritating to skin). The other thing I did almost every treatment, was bring a Boje chill towel my friend gave me (already moistened/wrung out, and cool from being in my car) and put it on the treatment area for about a minute before I changed back into my own clothes. I don't know if that makes a difference for skin irritation or not, but the staff has raved all along about how great my skin looks, with no breakdown, and the only time I had the sore spot was when I had forgotten my chill towel for 2 treatments. The towel is also awesome to have at the side of the bed for hot flashes - it's well wrung out so it doesn't drip water, but it's great for dabbing face, neck and chest to cool down quickly! Happy to answer any questions about radiation. The 6 weeks of treatment really fly by, and I can't believe I only have 2 treatments left!!!!! My turn to bang the gong on tuesday

take care all!

Willow

Willow22

Blair - what an odd thing for your BS to say! I really appreciate the doctors who tell it like it is, in a kind way, and give me information to take the fear away.... seems like this doctor was making a promise she really couldn't be sure she could keep, which sucks. I've always been small busted (FINALLY got to a full B cup with my stress weight gain through the diagnosis and surgery phase of BC), so I thought that being able to do reconstruction with slight enlargement, with matching on my left side would be a really nice perk out of all this crap.... now I'm not so sure. I have to wait at least 6 months from the end of radiation before having any reconstruction, so I have time to really research how things will look, feel and heal, but it seems like every choice has a cost to be considered. I meet with my MO at the end of December (wow - can't believe it will be time for my 3 month post chemo check up already!), and I'll find out about the monitoring plan and get good info from someone who's seen a lot of reconstructed boobs and heard whether women are happy with the results.

take care!

Willow

rljes

Just wanted to say HI Willow! 

Blair2

Willow - I guess my bs surgeon thought she was funny saying that. What really irritated me is that she bypassed any real explanation of biopsy or pathology reports. She was tired of repeating things when she didn’t repeat anything to me, because she never explained anything in the first place, so it was an aloof approach. All she talked about was how over worried I was - she made it all worse. I hope I never have to see her again, but my insurance only has her as the one bs.

I was DDD - now a D I think. I was way too big for my size. Had the Dolly Parton problem. The tumor was close to the nipple and for a while the ps didn’t think he could save it. It happened so fast in that month of time and now here I am looking a bit weird, but at my age - it’s no big deal. If I hate it after radiation, I’ll ask for a correction in symmetry. I really think it could be a quick fix. Just a tuck to flatten it slightly, but maybe radiation flattens it - don’t know. It’s ridiculous what we women ha e to go through

Willow22

Rljes - HI! How are you feeling? Hoping your first round went well with few side effects!

Blair - insurance networks suck! i didn't have to deal with it this year, and could RUN from my first surgeon... He is a general surgeon who does breast surgeries, and I'm sure he did a good job on my first lumpectomy. BUT, after the path report came back and I needed a margin revision to include shaving the pectoral muscle because the DCIS was up against it, he sort of threw his hands in the air and said I could have a mastectomy or it was "doable" as another lumpectomy. NO discussion of what a mastectomy would entail or the differences in success rates, complications, etc. Told me it was my decision to make, but no information given to base my decision on. Luckily I was able to get into a breast surgery specialist who did a great job of explaining my options and the likelihood of recurrence with each. Unfortunately next year I will have a set network, and the good BS along with the recommended plastic surgeons are all out of network, so we shall see....

I hate the way some doctors feel they need to manage emotions and reactions, and focus on that instead of giving information and medical advice. I am more relaxed and confident when I feel in control, so to me, having information is helpful. Plus, it's MY body, and MY info - so not up to any doctor to decide what to tell me or explain! and that's my rant for today

I'm not sure what affect radiation will have on appearance long term - I've been a bit swollen during the 23 days of full field treatment (so I actually look pretty balanced now), but I've been told to expect "retraction" where the skin and tissue shrink in and tighten (like after a burn, but on a bigger scale). I'm doing stretching and using lots of lotion to keep range of motion. The retraction is expected to go away as time passes, but I would imagine there are individual differences in whether it goes away completely or not...

Take care!

Willow

Neanie44

Blair2 - yes, seems a lot insensitive of your bs. My affected left breast seems to hurt more lately and of course mentioned to my MO who said - You will never be the same. Duh!! It is deformed as well and seems to hang just weirdly. Yeah and throw out the idea of a Mastectomy being a cure all, because the research says that you can still get cancer on the breast walls.

PauletteK - Yes, I am trying to get in the mindset of - chemo is over, put it behind you and radiation will not be as bad, but somehow, my mentality is just not there. I have my simulation appointment on Dec 18th, which I believe is the mapping - right? With Christmas being the following week, not sure if it will start then, but I will keep you ladies posted. Thanks for the encouragement.

Willow22 - I am a worst case scenario person as well, so tell me how bad you think it is and let me deal with the entire picture. So when my bs told me - oh no, wont see you for 6 months and then he allowed the rads dr to deliver the onco score, when I had to see him again to put the port in - my statement to him was- Imagine seeing you so soon and of course he dropped his head. Yay for you and being almost done!!! Please keep us posted on how you felt to ring the bell. Also, thanks for the tip on the Boje Chill towel - ordering today.

PauletteK

Really hate this, I typed a long reply and didn’t post

Willows, thanks for the tips and glad to know you are doing well, I am going to order the Boje chill towel. Questions how are you doing with shower? Can we use towel to the radiates area? Keep us posted, I like your direct talks.

Blair- your doc is so insensitive, what can I say!

New normal- yes that’s we called mapping, I have my mapping done last Monday so I should start my radiation around mid December. If you have it done week before Christmas you might not start until January or late December.

Ladies, hope you have a good weekend.

Willow22

newnormal - you are awesome for gently calling the dr on his comment! Hopefully he really heard what you were saying and learns so that he doesn't repeat comments like that.

Paulette - that has happened to me several times! During chemo, I often just gave up and took a nap.... just too much to deal with writing it all again I've been pretty good about following all of the rad clinic suggestions: no really hot water, have your back to the water and let the water hit your shoulder and run down your front rather than spraying directly on your treated breast (I have a hand held sprayer so I can use that everywhere else on the front to rinse, and my water pressure is kinda wimpy anyway) , gently pat dry with a soft towel. I used tom's unscented body wash in the underarm area to begin with, but to be honest, HATED the smell of it (you smell all the other ingredients), so I ended up using a tiny bit of my normal body wash in the pit. Generally just water on the breast itself unless I had gotten sweaty walking. I applied pure aloe from plant (cut a leaf open and wiped it on) and low-scented or unscented lotion or cream at bedtime. Lotion in am as long as my rad time was at least 3 hours later, so it had time to be absorbed (if it was an earlier appt, I waited to put lotion on till after the treatment). Hydro-cortisone for a little rash at the beginning (they said it is common) and for itchy nipple midway thru - keeps you from scratching and irritating the skin more. The bras I had gotten for after surgery were "cool fabric" which helps prevent irritation in the skin fold under the breast, and folks on the rad board here had a couple cotton ones they recommended highly. When my armpit area was tender, I turned my cotton sleep shirt inside out so the seam didn't rub, and also slept with my little soft surgery pillow tucked in the pit to prevent skin-to-skin contact. Keep drinking lots of water/non-caffeinated liquids and eating a good amount of protein, since you will be growing a lot of new skin cells during this time! Your clinic should have a "skin care" packet for you and also a "teach session" to go through all the info, and I found mine to be really good info with lots of time to answer questions. The nurse did say that women with smaller breasts and average weight tended to have less skin irritation (there's less skin-to-skin contact at cleavage and skin folds under the breast), so woohoo, having little boobs is finally paying off for me! My center just gives regular hospital patient gowns/robes to wear for radiation (ewwww), which are ugly and not very warm or private seeming, so I bring a soft, snuggly wrap to wear instead. It's actually a sleep wear separate (drape front jacket) that has long enough ends to cross over and tuck under my arm so I'm covered sitting in the waiting area, but easy to slip off on the right side when it's time for treatment. I'm much happier sitting in the gowned waiting area dressed like a regular person and not like a "sick" person, especially since it's a daily event for 6 weeks!

take care!

Willow

PauletteK

Willow ... thank you for the detail information. They suggested that I use Miaderm and I ordered couple of this radiation cream through amazon. Someone suggested the green tea soaking after radiation, but I already order the Boje towel. I have small breast also since it’s winter I haven’t even wore bra so I don’t need to buy any cotton bra. I haven’t thought about the small pillow tucked in at night, i didn’t need that when I had my surgery. I need to find one now.

Willow22

hi paulette, i was given some small samples of miaderm cream and really liked it.

I wouldnt bother finding a small pillow now.... i only used it for a couple days at the very end when my arm pit was a little tender, and you could use a soft hand towel folded to a comfortable shape or even a soft cotton T shirt.

Willow

PauletteK

Willow, you are such a angel, thanks for all these suggestion!!! ❤️❤️

Neanie44

Hi Ladies,

I hope everyone has been well. Just so I didn't confuse - I changed my "name" from NewNormal44 to Neanie44. I feel as though a part of me is starting to be somewhat normal, if we can ever say that - and Neanie was a nickname my little sister loves to call me. I may be crazy, but I think it is part of my emotional cleansing.

Take Care All -

sweetp6217

Hello all,

I'm hoping that you all are doing better every day. Good news on my front, so to speak. My surgeon seems to think that I'm free of cancer, pending (of course) upcoming surgery and results obtained by pathology while that's happening. I'll be thrilled if I wake up without tubes. The plan has been and should be to have a lumpectomy using laproscopic methods. They plan on extracting what little tissue remains where the lump was found and to take 1 or 2 lymph nodes to see if there are any cancer cells. They'll also take out those clips used during biopsies done months ago. It is scheduled to take place during the first week of January and I plan on being in and out of there the same day (about 6 hours including placing guidance wires, etc.).

The taste buds are making a slow come back but the fingernails and toenails are frail and brittle; some are separating from the nail beds gradually. Thank you taxotere (and a rather belated side effect at that)! I did not use cold socks during main chemo. Now, if I could just get the edema under control, that would be wonderful. Currently on a diuretic for a few days, so we'll see.

Willow22: thank you so much for sharing your rad treatment and tips. It is so informative!