Starting Chemo in September 2017

OCDAmy

JD, I'm sorry for all the complications you have had. I'm hoping the next steps will be easier. I am getting four rounds of TC as well. First round wasn't too bad.

LPH

So like most on the thread I too am starting treatment in September 17. I was diagnosed on 8/22 and had to wait to see BS and MO both on 8/28 for the plan. I will be getting Carboplatin, Taxotere, Herceptin, and Projeta every 3 weeks for 6 cycles. Then mastectomy and possible rads. Then Herceptin every 3 weeks for 1year. It stills feels surreal. I work as a nurse in outpatient oncology at a large academic health center. I work in a multi disciplinary clinic with solid tumors. It is separate from Women's cancers and Hematology. It feels as if I am speaking about someone else who was diagnosed with the big 'C'. My husband and I just told out 10 year old son that Mommy would be getting medicine that could make me not feel well and could lose my hair. Seems to be ok with it now. I am directly questions will follow. Happy to join the group for support

JD_RN

Thanks Mimi and Amy - just took myself for a walk even though currently sweat is frowned upon bc of PICC line - but my mental health needed some fresh air!

LPH - welcome to the club of which you would never want to be a member - but you will be loved and cared for here and we will all get through this together! I see you are a nurse as well - super hard to not micromanage my care.

Amy - oh you think you're OCD - you should see my medical binder - this is me trying to control that which cannot be controlled - lol. At least I haven't lost my sense of humor - that and my awesome support team keep me going - and my 5 dogs . . . I tried to post a picture of it but it said I couldn't post links . . . JD

PauletteK

JD - you are a true warrior 💪 Hope the future will be easier for you. I finished my AC will be on taxol path with you. I don't want to get neuropathy so I'm preparing myself for this battle,

Wish everyone don't have much SE

Icedgem

Hello LPH, I was diagnosed at the end of June 17, and I had my first TCHP on August 22nd. I am also having neoadjuvent treatment and will have surgery and possibly radiation at the end of the 6 cycles with Herceptin to continue every 3 weeks for the rest of a year. I have found the whole thing totally surreal and I am just trying to deal with it without thinking too much about the bigger picture. I am petrified of the 'C' word, and still can't believe that this is happening to me. I have started to lose strands of hair over the last couple of days and tonight it was really starting to shed. I think I will have to shave my head over the next couple of days, and then I will really have to accept the situation as I will look like a cancer patient. I have been planning for this time for weeks, buying scarfs and hats, like they were for someone else. I am feeling very self conscious and worried about people staring at me. I know that sounds stupid.

I hope your first treatment goes well.

Take care

JD_RN

Icedgem - NOTHING is stupid if you feel it. You have
every right to feel whatever you do about your journey - that's what makes it
yours. No one has the right to judge you or tell to feel one way or another. As
far as I can tell this is a super safe place to just express what you feel and
get support from others going through the same things. No one understands this
journey like those who have gone through and are going through it. It sucks
that its a large group but we are the ones who will survive and be there for
others after it is all done!

PK - my best friend from law school (yes I am both a
lawyer and a nurse but gave up the lawyer thing) had a year of AC bc she was
triple negative - you are the true warrior. Thanks for the good thoughts.

hopebringscourage

Good evening everyone! I am new to this site and like everyone else going through a wave of emotions. I postponed my mastectomy for 3.5 weeks because I needed time to process all that was tossed at me. I saw my oncologist, surgeon and radiation Dr. all at one appointment at a multi specialty clinic in my hometown. While it was very overwhelming I was later thankful to have a plan that all providers agreed upon together. I am almost 2 weeks post single mastectomy-everything is healing fine although my armpit is very numb feeling and seems swollen today. My incision site looks good but its painful more of a burning type of pain above my incision site by my collarbone. My drain was removed Thursday and I am hoping my body just absorbs whatever fluid might accumulate. I start my chemo on 9/15 and will be off through the first of October but my oncologist will let me have whatever time off I feel I need and my job feels the same. I will have my treatments once every 3 weeks for a total of 6 treatments. I want to return to work so am hoping I will figure out after 1 treatment what my "bad days" will look like.

I have done lots of research on cold caps and really not sure thats where I want to put my money-seems exhausting.

I am thankful for this site and the support it offers.

I have a tremendous amount of support between friends and family and everyday I am thankful and feel so blessed. Many prayers to all of you! This is not a club any of us wanted to be a member of but we are here and we can get through this together.

"It is better to light a candle than curse the darkness"

OCDAmy

So many of us; this really stinks. Let's keep each other updated on how we are doing and share ideas, tips and support. "You don't get it if you don't got it."

JD_RN

Welcome hopebringscourage - I hear you on the cold caps thing - it's expensive. As for the burning sensation, likely nerves that are waking up after surgery. Talk to your breast surgeon about that. I had some seriously random things happen after my mastectomy like one day right after surgery my right breast (or what used to be it) - started intermittently vibrating - I could only feel it from the inside nothing from the skin - I was freaked out - lol. Of course I googled it and it was nerves waking up and it resolved but it would have been nice if someone told me about this. Also I had some "phantom" nipple pain - my BS warned me about that she said its similar to when people lose limbs. This too went away. As for the armpit - I'm fortunate that even though my sentinel node was removed I have no numbness - but there was a lot of swelling right beside the armpit. Actually since its been so long I had forgotten about it and I just looked and wow - its better, not gone but better. Your body has just gone through major surgery, you need to appreciate it needs time to heal and some things take longer than others and everyone is different. But always ask questions because people who are going through this are a wealth of information - however if something freaks you out ask your doctor -- as I explained to my son about the mood swings of puberty "even though all us adults have gone through this and it is old hat to us, doesn't mean it's not new to you."

Amy - deal, by the way how's the thrush? So I have a sonicare toothbrush that I love do you think it might be too aggressive for use during chemo? Also I am very familiar with changing my toothbrush - back in college I had bacterial meningitis and then after that got 100 random infections including recurring staff in my throat. They wanted to take my tonsils out and since I had gotten the meningitis post-operatively, I was not feeling more surgery. My mom (who should have been a doctor) started researching and learned that the gestation of most germs on a toothbrush is 17 days - so she bought me 10 toothbrushes and I changed them every 14 days and voila - the staff never came back. Who knew? That was 1990. I still use that information to this day!

JD

Icedgem

I love my electric toothbrush too, but even with a soft bristle head it was too aggressive for me. I have a sore on my gum, so now use a manual baby toothbrush and swish with a salt and baking soda mix. I also have a water and hydrogen peroxide mix too and I alternate the two each time I clean my teeth.

Travel_Girl

Paulette - congrats!!! I am so happy for you. I wish you rid of tummy issues as soon as possible

MzPriss - yes! I am so glad you are finding a new MO. I went through several before I found my 'rock', the cancer journey with an MO that is your partner in this process is so much better. Hard enough to deal with everything else. Don't give up, ask around get referrals .

OCDAmy - what is that deodorant? I was just looking for that this morning. I was working out with my sister in law yesterday (she is a personal trainer) and afterward realized that I was very 'odorus' - my crystals aren't working. She is a trainer and so sweet, she didn't say anything ... I was like, that is on the list today - I want to be active/exercise and would rather not be so 'odorus' -- (laugh everyone ). Ok when I am by myself, I just like work out buddies

Brightness -- most MO's will give you something to help with anxiety/pain - you have got this! You will be so much better when the chemo starts, on your way -- getting past the first 'what is going to happen' is actually better. Don't delay, committ to you cc's go for it and take it 'head on!"

JD - Welcome and after what you have been through, you may find chemo easier. It has been a welcome surprise to not be as bad as I was imagining - I am on 4 rounds of TC as well, 3 weeks apart - #1 down (day 12 post first) and 3 to go. My surgery is post chemo, so any words of wisdom of things to ask (haven't finalized surgeon team yet, working on the surgeon/plastic surgeon pair) would be welcome.

I for one am looking forward to a good week, 10 days until #2 and I am feeling pretty good.

Keeping food bland & healthy, company upbeat and mind busy with work - getting my body and mind in top shape to take on the battle of the chemo vs cancer round #2.

We have got this ladies.

Travel_Girl

Oh and I ordered the extra sensitive heads for my sonicare and it is working ok for me. You might try that, I found them on amazon -- after searching for really soft options.

Jellytot

Hello everyone, first time posting although have read loads of really useful stuff on here. Am awaiting chemo/herceptin treatment, still have to have my postop consultation on 7/9 but that's probably the plan assuming the margins on the lumpectomy are ok . I feel paralysed with anxiety.. I am the matriarch of both mine and my husband's families so am desperately trying to hide my feelings. It's so hard as I just want to hide under my duvet ..anyone else felt like this?

JD_RN

TG - thanks for the sonicare options . . . what do you want to know about surgery - believe me I am unfortunately a wealth of information about how not to have things go wrong - am so happy to share my information and give you some tips especially as it refers to if you are having immediate reconstruction. Oh and by the way - before my mastectomy and before I knew I had cancer I noticed a distinct odor when I worked out - I was HORRIFIED. Interesting that post surgery that the smell is gone. Granted I have not been able to work out as aggressively as I was before but I feel like the smell has left the building and I'm super sensitive to the issue as I work out a ton and never want to smell!

By the way friends - let me see if I can actually post the picture of the haircut I'm planning to get - or a variation of on Thursday of this week. I've done the partial shave thing before but not as bold as this - lol - credit to the pinterest board that sends me cool shaved hairstyles. Grr this board won't let me post pictures - can anyone help with this - it keeps telling me I can't post links.

thanks and I hope everyone has a good labor day - JD

OCDAmy

Travel Girl, The deodorant is Native, I like the vanilla coconut scent but they have a bunch of scents. You can only get it online. Here is the link: https://www.nativecos.com/product/deodorant-women/ It really works well for me.

I was doing everything they told me for the mouth but still got the thrush on day 7. The nurse said my counts were likely down that day and this might happen at each treatment. No mouth sores. The medicine they gave me worked great and after two full days the thrush is gone. They have medicine for every side effect.

One thing I will say that helped me for surgery was sleeping in a recliner. There is a nonprofit here called Healing Chairs and they give women recovering from mastectomy a free power recliner to use for as long as they need it. This is the kind older people use that helps them get out of the chair. It came with a journal that all the women who used the chair wrote in. I slept in it for several weeks. We ended up buying an adjustable bed because I just like sleeping slightly upright now. My double mastectomy was not nearly as bad as I thought it would be and I have healed well, no problems. I have tissue expanders and they are not real comfortable. I get them expanded every two weeks. My insurance paid for two free bras and a prosthesis that is really cool. It has three levels of silicone on it and as you expand, you can peel off the layers.

I really wanted to to do the cold capping and was ready to order. I have a short layered hair cut and thin hair that requires a lot of work to style it and have it look good. With the cold caps you can only wash your hair every three days and can't blow dry or style it. I tried doing that for a week and my hair looked horrible. I have a professional job as a fundraiser and I meet with high end donors. I couldn't imagine myself meeting with people with dirty, unstyled hair. I think the wig will work great for me for work and special occasions. I am a little scared about permanent hair loss which is a rare side effect of taxotere but hoping for the best.

I did ice my fingers and toes 15 min before, during and 15 min after the taxotere infusion and chewed on ice. I am also using a nail strengthener. No neuropathy so far and no nail issues. I hope that continues.

Jelly, I was a mess when I was diagnosed. I was having horrible panic attacks. My oncologist put me on anxiety meds (Zoloft) and I feel so much better. Don't be afraid to ask for meds and counseling if you need it. This is scary stuff we are experiencing.

JD_RN

I have the most random of questions - I have more ice packs then I know what to do with but no ice mittens - lol. Question is if I ice my wrists and palms and leave my fingers free that should stop the blood flowing into my fingers don't u think? I have tons of wrist wraps since I had a wrist issue recently. Thoughts?

OCDAmy

JD, I'm not sure if that works work. I think the suggestion is to ice only your fingers and toes. That gets pretty cold, I don't think I want my whole hand iced.

Icedgem

Ok, I've had enough of sheding hair, it's been falling out for 2 days now and I'm fed up of clearing it up. I don't actually have any bald spots yet but have lost so much hair that it can't be far off. My hair is usually very thick, so it seems that I'm loosing the underneath first. I have booked an appointment to get my head shaved tomorrow morning so that I can finally put a stop to this and gain control. This is a massive milestone for me, I just need to get it over with now and then just concentrate on getting through the rest of the chemo cycles and trying to keep fit and healthy.

I hope everyone is enjoying Labor Day.

Hugs to all

OCDAmy

Iced: please let us know how you feel after you shave your hair. I'm dreading that day but know it will be here very soon. I'm on day 10 right now. Did your scalp hurt? That's what my oncologist said would happen and I would know it was starting.I was hoping to just let it fall out and not shave it but I can see where the excessive shedding is messy. I'll be thinking of you tomorrow. Cancer takes so many things from us and taking our hair just seems so cruel and personal.

Travel_Girl

Jelly -- you are not alone in your thoughts. The best advice I can say - is there is no right or wrong - everyone is different. I do think trying to hold it in for everyone else is difficult, find at least some peeps, even if a professional to let it out (at least on occasion) -- let out your insecurities. A friend sent me the best email over the past couple of weeks - so I will quote it for you -

"Remember, mental toughness and fortitude does not mean you have no negative thoughts or that you are 100% brave in the face of everything ... you can be both strong and scared ... you are human. "

I hope it helps.

JD - I am partial to DIEP reconstruction at the same time, and my biggest 'insecurity' is how to best research the surgeons and/or finding the best one for this surgery and at the same time, pair with the general surgeon to do the doublemx. I found one local .. . How do you actually find the real deal on both surgeon's past successes?? Oh and I forgot to mention, this is my second dx, so I have one radiated lumphetomy side to deal with - which makes me even more motivated to find a good pair of surgeons.

I am willing to travel, if needed,

I am just not sure where/how to find the 'best' for this and how to check referrals, what questions to ask. Any tips recommended. This is the last piece of the decision puzzle for me and while I have a little time to make final decisions, i want to lock the date down and know that I am running out of time for late nov, early dec.

OCD - thx for the link and the recliner was on my mind -- never even thought to consider rental, I will look into that now. I am cold capping and every day is a bad hair day -- i am working from home through treatment, so the trade off worked for me - we are the same timing, so I keep waiting to see how much I will shed even using it - I have asked all of my friends to remind me to 'let it go' and embrace whatever the look might be for the next several months.

Travel_Girl

JD - try doing a screen shot or 'picture' of the screen and then upload the photo versus a link. That should work.

rljes

Hello Everyone - I'm bouncing between ' Surgery August 2017' and looking at some of the issues I have to look forward to when/if I start Chemo in Sept or Oct in this site.  Very informative. I'm waiting on results if I have HER2 or not. 

Questions Please:  are you driving yourself to your chemo appointments?  And after your initial treatment, how many hours does a single session last? 

Thanks for talking about your lives...rj 

OCDAmy

rj, my husband drove me to treatment but I could have probably driven myself home, I live about 30 minutes away. I was a little sleepy. Not sure if future treatments will be the same. It was nice having someone there to talk to, especially for the first one. The first treatment took longer than usual. The infusion itself was ably 2.5 hours but there was a lot of waiting too. I also had blood taken, and saw the oncologist. They can't start infusion until your blood test comes back.

toughcookie_21

OCDAmy, when did you start TC? It's so helpful to hear from those who just started chemo! I'm bouncing between this board and august because I was originally supposed to start chemo in august. But now I'm starting on Friday.

Travel Girl- I asked my plastic surgeon to show me pictures of HIS work. He was able to show me several patients right on his iPad. I was leaning towards DEIP because it seems to look more natural. But I read that you can lose some core strength permanently and I chickened out at that. I ski with my family as well as other activities that require lots of core strength and I have back problems that would be exacerbated by any loss of core strength so,I went with implants. Well, tissue expanders for now. They hurt and they're not very pretty but you might need those with DEIP anyway. a

Brightness456

Rj, my MO said since I'll be getting taxol, or chemo lite as she described it, which I hope is true. I can drive myself to and from chemo. I'm going to cold cap though, so I'll need someone with me anyway, otherwise I would drive alone.

Travel girl, you described what I anticipate... every day is a bad hair day. No styling, no coloring, what's a girl to do other than stay home a lot.

Jellytot, isn't it funny how we still have to keep caring for others even when we really need to be cared for ourselves? My heart goes out to you

TNBC_Fighter

Hi Ladies. I'm new to this website and this is my very first post on a chat room ever. I am going through this for the first time (like many of you) and am trying to find my way. I am an American living in Istanbul Turkey with my husband and 4 children. Living in a foreign country where many people do not speak English definitely adds an interesting element to this whole experience.

I had a lumpectomy immediately after diagnosis in late July (IDC stage 2A) and found out I was triple negative based on Oncotype DX only last week. Definitely not good news! At that point I quickly flew to the US to get a second opinion at Memorial Sloan Kettering to ensure the standards in US align with what we're doing here in Turkey. I have an appointment with my MO this afternoon to decide on a final chemo treatment plan, which is looks like will be 12 weekly cycles of Taxol followed by 4 every other week cycles of AC. I am still not sure if this is an aggressive enough plan given my triple negative status. . .

I am supposed to start chemo tomorrow so am extremely thankful for this group and hearing about your experiences.

One of my biggest anxieties for chemo is that I don't think the chemo nurses will speak English (and I don't speak Turkish!) My MO speaks English but I don't think he'll be there the whole time and the hospital translator can only be there part of the time.

What information did you get from your onco nurses that you found incredibly valuable? I've looked up lots of information on the web, so it may be there's nothing different that you've been given. One specific set of information I'd love to know is the guidance you've been on germs. Having children and a job with lots of travel, I'm guessing I need to be incredibly careful and probably shouldn't get on a plane, although no one has actually said that to me yet. Thanks for any thoughts and advice!

Good luck to everyone getting treatment today!

OCDAmy

Tough Cookie, I had my first chemo on August 25. I am on day 11.

TNBC, so sorry for your diagnosis, but glad you found us. Hopefully you can have a translator there for the beginning of chemo. The nurse started by asking me a bunch of question about how I was feeling. She said each time she will ask those questions to track how I am doing. She explained what was going to happen and answered any questions I had. After the infusions started she would check on my periodically to see how I was doing. When it was done she went over possible side effects and when I should call them and made sure I knew how to take the meds I was prescribed. I would think after the first treatment you wouldn't need the translator. I was not told to stay out of a crowd, only to stay away from sick people and to practice really good hand washing. I think as you are treated, if your counts get low, that is when they will want you to be more careful in a crowd.

Good luck with treatment, let us know how it goes.

JD_RN

Good morning BC Family - as you all know I am on mind bending antibiotics for these 2 active infections that the doc is trying to kill before chemo and the Biaxin makes me so sick - I have a high tolerance for GI distress as I have lived with IBS since I was 20 but this is like nothing I have experienced in a long time. I was told that one of the reasons that my slime is multi antibiotic resistant is because people cannot tolerate the abx regimen. I can see why. A visiting nurse is coming today to change my PICC line dressing and draw labs and its all I could do to shower - I couldn't even get through one cup of coffee - so sad!

I have a busy day today - going to spend the afternoon with my son so I need to rally whether I feel well or not.

TravelGirl - I just wanted to comment briefly on the DIEP issue. I would google to see what docs are best at this - my doc just came to Georgetown from U Chicago and has done like 3000 DIEPs and does beautiful work. As for loss of core stability I disagree a little with Toughcookie (cute name) bc the DIEP is supposed to be a muscle sparing transplant. They try to use as little ab muscle as possible as I was concerned about this bc I am a runner and weight lifter and tennis player. There are not many surgeons who will do the double mx and then an immediate DIEP because of the time under anesthesia for you and the fact that there is shift change in the OR during the middle of the procedure. There is also an issue at some hospitals about OR time and the double mx is done during the breast surgeon's time and the DIEP takes much longer and many plastics doctors want to do it on their OR time as generally they have more. Thats my 2 cents.

I will try to write later if I have time and if I am feeling more human. Question of the day - I'm not working and haven't been bc I was just cleared to go back to work when BC came up so I need a hobby to take up some of my time and to take my mind off of the current hell and upcoming hell. Any suggestions - I can't workout until I get my port so that is a huge issue for me! Ok trying the haircut pics again . . . thinking about the longer one as my hair is currently down past my shoulders -

if this works credit to my tech hero TG! xoxo - JD

Travel_Girl

JD - it worked and the hair styles are very cool! I am not that cool (a tech, travel nerd!) to pull them off... however ... they are stylish, cool and I say go for it.

thanks for the tips on surgeons. The local one I found has done 1000+ and they work in pairs to keep the OR time down (2 plastic surgeons + breast surgeon) ... which i thought was good. 3000 sounds better - I will dig some more - tech is my thing and digging is good - just didn't know where/what to look for.

TNBC - First, I am Triple Negative as well. Scary, Scary, Scary - I am digging into lots of info. Mine i believe, is stage 1, i think -- that is what the medical teams thinks based on sizes/MRI/ultrasound. I started chemo first, so hard to tell 100%, as I did not have a sentential node biopsy yet, that will be prior to my surgery - cause if they find anything, means radiation before DIEP. My big thing is hoping the chemo knocks it 100%, cause that has a better long term prognosis. If only I could influence that. Onward! (I try sooo hard not to dwell on this day to day)

As for traveling during chemo, I have done a ton of research on this. So I can share this with you -- I am doing four rounds of TC, 3 weeks apart. For me, days like 4 to 10 are the lowest white blood count days, so if I do travel it will be week 3, with a mask at the airports, etc. Planes are germie (MO office said it was ok) -- so if you do travel masks and cleaners, etc. Taxol is every week, not sure you would have a window that is safer. In the end, I still haven't decided to travel - however - leaning not -- even though I am stir crazy. I am going to attempt more video conferences (not my favorite)- preferably on the days i wash my hair (cold capping! and fine hair to begin with). I travel 80% for work most of the time and being confined to one place makes this bc worse for me - I want to do everything I can to keep on my chemo schedule, so I probably won't unless its a short charter flight or car trip -- the long haul would scare even me.... I am grateful to be working at home and it helps me stay healthier, so focusing on that.

Icedgem

Well I finally done it - head shaved. I thought it would be really sad, but the hairdresser was probably more choked up than me. It actually felt a relief to get it off. The hairdresser tried to talk me into a short pixie from my bob, but as he was combing through my hair a large pile of hair was already collecting on the floor. If he had a done a pixie it would have had bald patched by Thursday.

Apparently I have a nice shape head!, not words you really want to hear. Anyway, I put on my beanie hat and walked straight into CVS to get a prescription filled within 5 minutesof getting out of the salon. I had to brave it and face the world with no hair, and no one looked twice at me.

What I am actually worried about now and what I am doing is packing up to evacuate from Hurricane Irma. I live in South Florida and the chaos is starting now. I have to be in Miami hospital on Thursday and am due round 2 of chemo on Tuesday, so I hope that I can still get to and have those appointments. I cannot believe what challenges have been thrown my way this year!,. Shaving my head was actually the easy part!.

Take care everyone and I'll keep you posted