Starting chemo July 2018
Starting chemo in a few days, had a delay after PEt scan, needed a biopsy of adrenal gland. Initial findings show no cancer cells in gland but waiting for lab results to confirm. Hoping to stay stage III....keeping my head up.
Comments
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I think I'm going to be in your group. I'm Stage II, Grade 3, Triple Negative. My breast surgeon has ordered genetic testing for me, so we'll see where that goes. I'm at a research center, so I'm hoping I qualify for one of the trials .I suspect things are going to start moving pretty quickly, so I'm trying to enjoy the 4th with my family. I'm still tired and anxious, and I've been dealing with nausea for some reason. Oh, and dizziness and falling. I've reassured myself that my nodes showed no encroachment, that the CT scan I had in January of my head showed brain, but no lesions. The CT scan my pulmonologist just ordered will work for clearance, so all I have to do is get cardiology clearance and a port and we're off to the races.
Jkittle, I'll be praying for your good outcome. Gentle hugs and and warm wishes.
Gina
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hi there! I was diagnosed June 21 with IDC triple negative stage III. Had MRI, PET scan, got the port a free ECHO and waiting in adrenal gland biopsy results. Waiting on genetic testing but it’s likely not genetic. I’ve had nausea and other tummy upset from stress and worry. Mostly feelings ok mentally but it’s hard. Starting AC DD chemo tomorrow, if biopsy result she show no metastasis, otherwise it’s stage 4 and may be different tx regimen. Looking at surgery and radiation later. My son helped my buzz my hair off, it was already short. Family and friends have been amazing.Keep your head up, I’ll be thinking about you!
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Hello July sisters! My 1st of 4 doses of TC (taxotere and cytoxin) was on June 29. While I was taking the dexamethasone, I was having a pretty easy time of it, but without it I am now very achy. I can't decide if it's muscle or bones or both, but it's up and down my back. Just started taking some tylenol and plan to alternate it with ibuprofen to get a handle on this. Should have started earlier but I hate taking stuff. Taste is really starting to go too. No nausea.
Hair is still here!
How are you all doing?
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I will most likely also belong in this group... Triple positive, after two operations due to close margins - even after the second one there were close margins at one resection side.
ultrasound showed no problems in liver or anywhere else in the belly, lungs clear, bones clear (scintigraphy). brain gets no check here (am living in Centr. Europe) at this stage. too expensive to do for everyone, they say. also no PET scans or breast MRIs here.
meeting with oncologist to plan my treatment next week. I will definetely ask for genetic testing.
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Hello ladies,
Stopping by from the april group. You guys are wonderful strong women, you can do this inspite of all the self doubt and fears that surround you. This is a lovely community. I dont know how I would have managed without this community and my group. I would suggest to read up on the threads from april, may and june, gives you an idea about whats coming.
TNBC ladies, please dont google. You are already in a fragile state of mind. You arenot doing any favour by reading substandard research. Most of TNBC articles out there are all doom and gloom. Okay not most. But we have a tendency to go for the worst outcomes.
The hardest bit would be getting in the chair for your first chemo. But its doable. Its okay to have a big cry or few for your hair or whatever isbothering you. Jkittle, I have a 6 year old girl. We bought her a pink wig when I got mine. I started on April with DD AC followed by Taxol 12 weeks. I go for Taxol 7 on monday. I hope my blood counts are okay. I should receive the call any momentfrommy Oncology clinic.
If I can do it so can you. Be kind to yourself, that is what will get you through.
All the best to all of you.
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Frog on the lilypad (nice nickname, really got the calm image in my troubled head) thank you so much for stoping by! I'm actually following your april group as well as may and june groups. at least I know what to expect... even though I dont have my treatment plan yet.
right now we have a noisy visit of our friends with 3 little kids, for 4 days. (I have two small kids). It's really geting my thoughts away from cancer. and the pack of kids are really making it count 😀 they are noisy and it doesn't bother me anymore, not the tinies bit (partly because we have a fairly large garden with nice weather at the moment).
your advice not to google really could be applied to anybody, not just TNBC... being tripple positive, I have had a look at the SE of hormonal therapy - and I shouldn't have done that. (at least I checked also a positive thread with ladies with tiny to no SE, it helped a little)
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Hi! I will probably be in this group too, met with my MO yesterday and she scheduled my first chemo for 7/26. She is thinking dose dense AC followed by weekly taxol x12 weeks and the year of herceptin; but she was going to discuss my case at their tumor board on Monday.
I talked to her about cryotherapy while on the taxol to help prevent neuropathy and she was very encouraging. I had read some previous threads here about it and found a reasearch paper published early this year too.
Already got my wig (2 actually) and I'm trying to look forward to wearing them (like adult dress up😁) but I also am devasted about losing my hair. Trying to be strong like so many of the ladies on this forum.
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Hi Ebronson, I want to do cooling of hands+feet too. I have read very helpful threads here as well as made some research. I think nobody does it here, but since I don't see any possible harm in that, I hope there won't be any objections....
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Hello everyone,
This is my first post, I've been reading the forums for a while, but it's finally time to chime in as I'm starting chemo tomorrow. 6 x TCHP. I'll be using the Paxman Cold Caps in an effort to retain some hair. I am terrified and I don't know what to expect. Just even getting to the infusion room tomorrow without having a mental breakdown is going to be a challenge! I question whether I have the tenacity to endure what lies ahead. Best wishes to everyone!!
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Hello Ladies!
I am likely starting chemo very soon. focusing on fertility preservation at the moment.
I am on my second cycle of ovarian stimulation to harvest eggs to make embryos to freeze. I spent too much of my life devoted to medicine and failed to work on some of the other important things in life like socializing, finding a partner, thinking about having kids or not....so then I got the BC diagnosis, didn't think I'd end up needing chemo and felt super stressed by the embryologist trying to fit in a cycle of ovarian stimulation into a 10 day window I had at home between traveling for work, so thought I could figure it out a little later. Then I got my Oncotype DX score of 36 and life got complicated. I ended up with one embryo from the first cycle and hoping for one - two more this cycle (projected egg harvest on Friday the 13, Ha!). Then I'll start taxol weekly x 12 followed by AC every 2 weeks x 4 from what I hear.
I haven't heard from my oncologist as far as when she feels OK with me starting chemo after the egg harvest and how long she wants me to stay in town after the first infusion, as I am supposed to be going half way across the country to work for two weeks. Luckily, since I'm working at a hospital, I can do infusions while I'm there.
From what I've heard, taxol is supposed to be relatively benign. I'm going to try the Penguin Cold Cap to try and save my hair as much as possible. I've had my hair long down to my collar bone or longer for years and years, so while losing it is bothersome, the thought of not having any for 5 months or more and then taking so long to grow back was bothering me more. The cold caps are supposed to be really effective for Taxol, less effective with AC. Per the Rapunzel project, The Penguin Caps have the best data for saving hair with AC. If the cap isn't working, I'll stop, shave it off and get a Henna design on my head.
I am going to try and cool the hands and feet too, as I really need to keep my hands in top shape for work. unfortunately, I have reynaud's syndrome too, so not sure how that'll work.
JKittle-- fingers crossed for your adrenal biopsy. Most things that show up in the adrenal glands on CT scans end up being nothing, so chances are good you'll be fine from that standpoint, but better to know what your dealing with than not know. -
ColoradoHolly - Good luck tomorrow with your first infusion - I understand the nerves. Even though I had surgery first, I was so conflicted because one minute I just wanted to get it over with and the next I was in denial and just wanted to hide under the covers. We are here for you and it is just one step closer to putting cancer behind you.
Cria - I have also have Raynaud's in my hands and have also been diagnosed with CRPS in my left foot so that is my main reason for wanting to ice, so I don't get any flare-ups. I'm not looking forward to the cold, but it can't be worse than the hot/cold shock therapy they had me do for my foot. Hopefully it works for both of us!
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Thats right JaBoo. Google does more harm than good. I understand all the information at your finger tips but at the present stage you are in, the crazy days between all the tests and the realization that this has actually happenned its too easy to go down the rabbit hole.
You will all get there. A new you just in time for the new year. Prepare notes for your docs or nurses. Questions you have, concerns anything. There are no silly questions. Keep a note of your SEs, they follow a set pattern.
After being in this for 3 plusmonths I can tell you time will pass, somedays very fast and sometimes it will drag, but it will pass.
All the best to all of you.
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So my 1st chemo is next monday, the 16th. I'm scared stiff but at the same time I am glad it's planned...
I will get 4x AC every 2 weeks and then 12x Taxol with Herceprin and then Herceprin alone.
OK, starting to stuff myself even more... My stomach is not very strong so I'm really afraid of losing weight during chemo. My BMI is around 19
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Ebronson, hi, your chemo-plan seems the same as mine... best luck to both of us
Crua, wish you luck with your current cycle and more eggs. hugs...
coloradoHolly, how did it go?
Frogonthelilypad thank you. its so kind of you to come here with support
I think way too many young under 40 here... what is this....
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Hi Cria,
Just wanted to share some encouragement about Penguin Cold Caps! I am in week 8 of twelve weekly infusions (switched to Abraxane after a reaction to Taxol) and am happy to say I still have 90 percent of my hair! Find a good partner who' not afraid to strap those suckers on tight!
Good luck with everything. I will keep an eye out for hair updates from you
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JaBoo, Thanks for the good luck wishes, looks like only two follicles are going to be big enough to get eggs from this time, I'm hoping for two perfect eggs that do everything that they are supposed to do.
CocoonCat, Glad to hear that you're managing with the icing. My Raynaud's was really asymptomatic after I started SSRIs 17 years ago, but lately it's been making itself known again. My oncologist's nurse said not as many people have been icing hands and feet lately and it doesn't sound like the infusion clinic will have anything like your fancy flippers. She says she knew one patient who got some gloves off of amazon that had pockets for ice packs. Anyone else out there have any information on mittens or gloves for icing hands/fingers? maybe something that will let me do other things at the same time?
Mobscene 207: Thanks for the encouragement on the cold caps. My oncologist painted a picture of quite a hassle, and poor results (more for the AC part, from what I hear). I'm a little confused because the Penguin page says that you cool down for 30 minutes before infusion, keep it going during infusion, then continue cooling for 30-150 minutes afterwards. The onc nurse says it is for 1 hour before and 5 HOURS afterwards, which does seem to be a lot of hassle. The nurse also said something about a person from penguin doing the cap changing? The web site doesn't mention that. I plan on calling them tomorrow.I feel like I have too many things to do before chemo starts and not enough time... Thought I would start Monday, but not infusion slots available until Wednesday, and this is messing with my travel planned for work and I almost want it to start tomorrow so I don't have to worry about it, not that worrying about it does any good.
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hi there!
I had my first AC chemo last Friday. Felt pretty tired Friday, Saturday and Sunday. Monday was better and I was ok today, went to work. Mostly achey body and tired today but not too bad! I went for a walk on the ferry home for 20 minutes and that seemed to really help. No nausea during the day and taking meds at night for sleep/nausea. The Granix injections aren’t too bad, my hips hurt this morning but are ok now. I think I can do this!
Met my Rad oncologist yesterday and had a good conversation about Mediterranean diet, excercise, vitamin D and the plan for radiation tx after surgery. He was very kind. The biopsy of my adrenal gland was inconclusive, as it had no cancer cells but also no adrenal cells. The Rad Onc said it only lit up as a 3 on my pet scN so he thinks it’s not cancerous, we will know if it shrinks from chemo that it is or isn’t, which is important as that would throw me into stage IV.... thinking positive thoughts.
Hope u all are getting through this, it’s tough. But talking about it does help a lot. Hope you all have a good week
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Hello,
Reporting back after my first TCHP infusion yesterday. It was a very long day (nearly 9 hours with the slow drug pushes and waiting times between the H & P, etc, plus cold capping added 2 hours to the day). I had a mini meltdown toward the end as I was enduring a pretty serious ice cream headache and was just ready to be done!! But everything went well, no reactions to any drugs. I went home and ate a normal meal and felt "hot" for a while with a slightly elevated heart rate. I was able to sleep through the night and woke up feeling foggy and drugged. Drinking lots of water and moving around this morning I feel OK, still a little fuzzy but no sickness at this point. Awaiting my Neulasta on-body pod to inject me later this evening. Let's keep this going ladies! 👍
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Way to go ColoradoHolly!!!!! You made it through your first infusion! I've just gotten mine on the books for Monday and I started freaking out a bit yesterday, so I'm glad to hear you did OK. Hugs to you.
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Cria,
I freaked out more before the infusion than the actual day of. There is so much going on during the infusion day that it's enough to keep you distracted. Plus I requested some Ativan to help with any anxiety...and it worked. I would recommend it if you are feeling anxious going in, or if you would just like to avoid anxiety altogether! Sending you positive vibes for the next few days 💪❤️ soon you'll be one down, too!!
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Jkittle that sounds encouraging, you rock! what a posirive attitude! when's your next AC? I'm still waiting for my 1st one and freaking out
ColoradoHoly great, you made it through! what a day it mzst have been with 9 hours!
Oh crap I want this behind me
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Hello ladies! I will be joining the group! I start my first chemo on Monday the 16th-JaBoo, I think you said the same.
I am getting dose sense Adriamycin and Cytoxan every other week for 4 cycles, then the Taxol weekly for 12 cycles.
It’s crazy how fast all of this has happened! I had the Mammo and us on June 26, and they told me straight up I had cancer, and now I’m starting chemo.
Question:Anyone else work out at the gym?? I’m not happy because the nurse during my chemo teach today, told me I shouldn’t go to the gym due to germs. I don’t want to put myself at risk, but that’s a big stress reliever for me.
So, I’m glad to have these boards and be able to meet and share experiences with other women!
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Hey Fixyourdog...I only just joined this site, but since you are triple neg and starting TC, I wanted to let you know that I just finished (4 treatments over 12 weeks), and it wasn't AS bad as I imagined. The back pain has been rough, and the fatigue gets worse as you go. Then there have been minor side effects...dry eyes (causing a stye at one point), some tenderness in my mouth, tastebuds were shot (couldn't go near my red wine at all...but sweets were all good). I did the cold cap for the first two treatments, but started to lose hair in clumps just before treatment number 3 and decided it wasn't worth the pain (and it was painful). I've lost a lot of hair, but not bald (got a buzzcut to make it easier to deal with)...yet.
The side effects are really cyclical; you can almost plan them out after each chemo. At least for me...the two or three days post-chemo I was fine, after that, I crashed for three days with fatigue, minor tummy problems, back pain, things like that.
I wish you lots of luck...i'm preparing for a lumpectomy next, so off to find a surgery forum
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I got my first Lupron injection today (didn't realize it goes in your bum, ouch!) and my first 'fill' from my PS. I'm now the proud owner of a small 'B' cup (just guessing, I haven't actually measured). I actually had gotten used to be mostly flat (deflated TEs) so now these little boobs feel heavy🤣
Cria, good luck with your egg retrieval 🙂 I completely understand the feeling like you are running against the clock. I'm sure you will feel relieved to get the first infusion out of the way - I've still got 2 weeks to wait for my first one and it's driving me nuts!
ColoradoHolly & Jkittle, I'm so glad your first infusions went well, please keep us posted on how you both are doing.
JaBoo, as of right right now ACTH is the plan. But despite the million and 1 things I have to do between now and my chemo start date I have decided to seek a second opinion on my treatment plan. I just don't know if I'm comfortable with the risks of AC, and I tried to talk to my MO on Monday and apparently she broke her jaw last weekend so I won't be able to get more info from her until next week.
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Misha, yes, my plan is exactly the same - starting monday 16th with AC every 2 weeks and then 12x T weekly with Herceptin. glad you've joined this group. what kind of tumor do you have? (nothing in your signature) but if I understand correctly you are doing chemo prior to operation?
Ebronson, I completely understand you don't like the prospect of AC... I'm scared out of my mind! But since I had 1 node positive (albeit just with micromets) I believe I have to do the AC
I had a meeting with MO on Tuesday and made a telephone consultation with another oncologist on Wednesday. she confirmed the treatment and gave me some hints as to whats next etc. I am going to do genetic testing and then DBMX I believe. Prophylactcaly, since I'm already after lumpectomy
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Misha—just popping in from the May group to say I’ve kept up with the gym. Not as frequently as before tx but still going. I’m not doing classes like I used to—just cardio, and I always wash my hands when I get home (although I’ve always done that).
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Thanks for the words of encouragement, Lisa_Maria (btw I am single receptor positive, not TNBC). I'm glad to hear that the next 3 rounds should be similar to 1st since it's been uneventful. My MO said the same thing. I feel great at the end of week 2, although a cold sore has popped up in it's usual place on my lower lip. Seems to be an annual thing for me. Oddly enough I feel my taste sense has improved back to normal. Hair is still here and I'm getting attached to pixie cut I got in prep for hair loss.
Good luck with your lumpectomy. That was another thing I over worried about but turned out to be a nothing burger. I even kinda like my tidy scar! Hoping for clear margins and negative nodes for you!
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Hi everyone, I'll be joining the July chemo club on Monday, the 16th. Finally the waiting is over! Port was put in last week. I must be used to it by now because I hardly think about it unless I'm driving. Buzzed my hair last week. Figured it'd be easier seeing it fall out short, rather than in big clumps. Everyone keeps asking me how am I going to manage with chemo and work. Kinda hard to know now because I haven't even started chemo yet! People..lol All I can do is take it one day at a time, stay positive and listen to my body. I’ve been going 3 miles on my treadmill almost every day. Feeling good and ready for my next challenge 😉 Hope everyone in this group does well through their treatments. Have a great day!
Rose
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- JaBoo - you've got this! I've said it before but I think the anticipation is the worst part. You will absolutely get through your first infusion and do great.
- Misha, Ingerp and RoseRed - glad to see some other active ladies on this thread (perhaps there are some others, too?). I'm very athletic (cyclist) and am concerned about how chemo is going to affect my activity schedule, energy levels, etc. Yesterday was my Day 2 and I was a little too tired and slightly dizzy - a bike ride wasn't in the works, but I was able to walk my dog quite far. I'm going to try to ride today, depending on how I feel (so far, I feel better than yesterday). I didn't receive much advice from my MO or anyone else regarding not going to the gym other than being extra vigilant about hand washing, etc. Of course if you are having issues with your WBC counts being low at any point, maybe it would be a good idea to avoid the gym during those times. But what I have heard is that exercise is the best thing you can do to get through this, so let's keep each other accountable.
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Thank God I am not alone!
JaBoo, yes doing chemo first. I should have a dx in my signature now unless I set something wrong, which is likely! I have IDC 2.9 cm, stage IIB, T2, N1, ER/PR+, HER-.
Well the gym issue may not be an issue anyway because DH and I figured out without me working, we can’t afford the expensive gym.
So, I will have to learn to do stuff at home. RoseRed-you are brave for shaving your hair off before you even start! That’s empowering! Glad to know JaBoo, you and myself all start chemo on the exact day! We can commiserate together!
ColoradoHolly, totally like the idea of keeping each other accountable for working out! I’m in!
I’m sure I missed someone and I appreciate the warm welcome!
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