Calling all TNs
Comments
-
Rshannon,
I had both TN and ER/PR + breast cancer, but not 15 years apart. Mine were diagnosed within days of each other. So it is possible for one individual to have two types of breast cancer. Depending on tumor size and oncotype, you may not need chemo or radiation, though I would imagine your treatment will include Tamoxifen or qan Aromatase inhibitor this time around.
Good luck! I hope everything turns out well for you.
Trish
0 -
Oops! Missed the whole "already doing chemo" part Damn you, chemo brain 😁 Best wishes.
Trish
0 -
Hey there,
I am joining your board. I had been lurking for a couple of weeks, and I suppose now it's time for me to join. I am 43 and felt a lump in the shower on Jan. 11th. I scheduled an appt. that morning, and then the rest is history. I believe I am stage II. I am triple negative, and was negative for the BRCA genes. I had a PET scan that came clear with everything except for the known lump. I also had an MRI that showed something possibly in the other breast, but when I went to get an U/S, nothing showed. This morning I have to go back for an MRI Biopsy, then Chemo Class, and then surgery for my port. I will be doing AC for four treatments every other week, and then T for 12 weeks. I have 7 year old twins. I would like to try to work during treatment as my boss is being very supportive and is allowing me to work from home. I don't know how feasible that will be with the treatment plan, but work is a good distraction from the dark places my mind likes to go when it is idle. I also am the primary wage earner in my household, so I am a little stressed about funds. Last night I had a dream about my first chemo. It was terrifying. I have read the other boards on getting ready for chemo, but was curious if there is anything that is specific to AC-T that I can prep for? Did you all chose to shave your head before treatment? I read somewhere that hair starts falling out around the 3rd week, but I'm not sure if that is for this type of treatment. Lately, my biggest concern is the lingering effects of chemo, and the quality of life after. I know I should take it one step at a time, but I am a planner. I can't help but try to look into the future. I'm so thankful for a place to go to, as this feels very solitary. I was a part of a forum when I went through my IVF journey, and haven't been on once since. Take care.
Mel
0 -
Mel, sorry to welcome you here to our little club nobody wants to join-- but welcome!
I took a different chemo, so cannot answer you specifically re AC/ T.
What you can prep for: make some dinners for your kids and freeze them, and set up some rides and playdates for the post chemo days that are the hardest... (In my case I began to feel low on day 3 and generally pulled out of it by day 6 or 7). Once you have done the first chemo you will have a sense of your SEs and what your pattern will be. Then you can make sure important meetings etc do not fall in that window. I am self employed and I worked on a low pace from home, but did not push myself. For me the fatigue/anemia from the cumulative effects of chemo was worse than the specific SEs of the chemo. I felt mostly pretty decent until the latter part of the chemo (last 2 doses) when carrying groceries from my driveway to my kitchen door would wind me.
I did not shave my head. And not all of my hair fell out. But I looked like one of those balding men who keeps their remaining hair long (crypt-keeper style) and it looked horrible-- so I cut it off at ear-lobe length and wore a cotton knit smurf hat with my hair sticking out the bottom. Never wore a wig.
I did a fake homemade kind of cold capping, beginning w chemo #2 (bought 4 migraine cold caps off amazon and used them). My hair had already been zapped from being unprotected on chemo #1 but by chemo #6, I had a five o'clock shadow of hair returning. Honestly, as much as I did not want to lose my long hair, it was a non event when the hair fell out. Nothing like the possibility of death to make hair loss into a very small problem!
People will offer to help you. Can I visit? Can we have coffee? Do you need anything? I suggest you have a list -- and make some assignments when it is a person who is solid. I said, " I am sure to need help but can't predict when... can I call you if something comes up?" -- and then I did call the people who had offered to help, say for a ride to and from port placement, or a grocery store run, in your case a kid pick up or drop off... One friend who offered to help me is a great cook so I asked for bone broth. She brought me a huge tureen of organic homemade bone broth and I froze it in small containers -- and it was great to have on hand. Feel free to say "I am too tired for visits... please just leave it by my front door....
I live alone and my kids are grown... I wasn't sure what help I might need and I came up with the solution of having a friend stay w me for a few days post chemo. On chemo day I went alone with a book or my computer and was fine on my own. But day 3-4 I was zonked out. So I had a different friend with me each time, and they came on the evening after chemo day, and stayed for a few days.... My adult son came for one of them too. It was a GREAT solution if you need some help (BUT pick the right people-- those who know how to cook, and who can be mellow and do their own thing if you need to sleep.) It made there be a silver lining to each chemo, when an out of town old friend would arrive to help me. Now is your time to be the recipient of help with no reciprocation! :-)
0 -
Hi Mel,
I have a similar diagnosis and treatment plan to yours, but am a bit ahead of your timeline. I found AC tough but manageable with help. My youngest is 13 though, and pretty independent. I think the suggestion of setting up play dates / rides is a good one.
I had a ton of people offer meals and so set up a site on www.mealtrain.com to organize the food coming in. (I told my husband that we needed to invest in a freezer.)
My worst day was also day 3 post chemo. I was most tired and nauseous then but by the second week I felt pretty normal. I just started Taxol + Carboplatin and am still finding my new rhythm now, but once you find your rhythm you can plan work accordingly. I'm also working full time through chemo partially for my mental health and also, yes, for the income.
I shaved my head after my hair started falling out (right on schedule at week 3) because my hair was long and I didn't want the mess. I invested in an expensive wig, which I've worn exactly once, and a bunch on inexpensive hats which I love and wear every day. I want to incorporate funky hats into my permanent wardrobe post treatment! Anyway, if you search "chemo head covering" on amazon you'll get a lot of choices. If you do lose your hair, consider also buying a couple satin pillow cases and definitely some soft and comfortable night caps. Bald heads get cold!
Special mouth wash and toothpaste recommended by my dentist (Bioteine) has helped with dryness and mouth sores when they've occurred. I also use artificial tears as your eyes can get dry and then, counter intuitively, tear up like crazy to compensate.
My best advice - ask for help and be specific. Food, chores, playdates, etc. I also designated 2 "help coordinators" in my husband and a close friend to manage things. I've been blessed with an avalanche of offers and have a ton of karma to pay back when I am able! It's a good problem to have.
I contacted my daughter's school to let them know what was going on so they could 1) watch for issues and provide support and 2) change my husband to the primary contact.
Finally, I set up a site at Caringbridge.org to keep friends and family updated on what's going on. It's just so much easier to be able to type out an update once rather than answer a ton of well meaning texts or calls when I'm tired or woozy. I made my sister and husband "authors" as well so when I came out of surgery for my port, my sister was able to let everyone know all at once. I even made and posted an Amazon wish list on my caringbridge site since so many out of state family kept asking what they could do.
0 -
Hi Mel- Welcome and sorry you are here. I have a similar diagnosis (just earlier stage) and treatment plan. Had my first AC treatment last week and it was harder than I expected but I have been able to work an adjusted schedule (a teacher so cant work from home!) they made some adjustments to my anti nausea meds and will adjust my IV anti nausea meds next treatment as that seemed to be my worst side effect and today I actually felt like myself and had a great day!
As for my hair- I am shaving my head this weekend preemptively since I feel like I would be stressed by it just falling out.
There is a great forum on just AC treatment that I got lots of information about what to expect. Good luck and keep us informed and ask any questions...
0 -
Thank you Santabarbarian, Kber, and Mncteach for the welcome and advice. Right now my husband works from home, so he already handles a lot of the kids transportation and their meals. I am having the treatment given on Thursday, and my hope is if the SE trigger on the 3rd day, that at least it would be on a weekend. I did buy a couple of head wraps on Amazon, and I was looking at wigs. I find it interesting that I have donated multiple pony tails to locks of luck and Pantene, and now that I am looking for one, the price ranges go up to a 1,000 bucks! I'm not attached to my long hair, but if I actually go into the office I don't want to draw a ton of stares. I also didn't want to wake up to a sea of loose hair. I will probably cut it short over the weekend, and maybe shave it when it starts falling out. As it is, my hair is already falling out, so I doubt I will be one of the ones that still has hair. I was also debating on buying an eyebrow kit, but not sure it will be worth the time. I was selected to be a part of our executive master's training at work, and it will require a presentation at the next meeting. We will be recording our presentations, and having that done with no eyebrows will be interesting.
I am super sore from the MRI biopsy and the port. My neck feels so stiff. I had to get a tooth pulled a week ago, because it had an abscess. All 3 are on the same side. I am very thankful for all the professional nurses and doctors I have dealt with. They have really made all of this bearable. Tomorrow I have a heart check, but I don't know if that is just a scan or an EKG?
I am truly grateful for all of your advice and insight. Reading these boards makes me feel less isolated. Have a good night.
0 -
Not defined- I had to have Echocardiogram before I could start treatment. It was something new,as is most everything I have done since being diagnosed, but easy and most of all painless! If you let them know where you are sore they try to be extra careful around those areas. I hope you start to feel better. My port still aches when I turn certain ways but very bearable (had mine put in just over a week ago).
0 -
Thank you Mncteach. I had to sleep sitting upright last night, because it felt so tight. You were right about the echo. out of all the test that one was the most pleasant. They played nature sounds during the scan.
0 -
Hi Melly-Mel, welcome. I wrote on a healthcare site that my family and friends could subscribe to for updates on me too. Mine was called mylifeline.org I have forgotten some of the details of my chemo time, but I didn’t have nausea, more of a lack of appetite. I recall having more issues from my neupogen injections. My AC infusions were spread out to every 3 weeks because of my sluggish bone marrow. I felt crummy the first week, but normal the next two. Taxol was much harder for me, and that’s when the fatigue really set in, especially closer to the end. I didn’t have a big attachment to my hair, so wasn’t worried when it came out. I found a great wig from Christie Brinkley and just wore a Buff around the house. As for the eyebrows, that was hard for me. I felt like I didn’t look human without them. There is a girl with bLog that shows you how to put on eyelashes and eyebrows. I will go find it and come back.
0 -
Mel, here it is. This girl is great. She has alopecia, so she is very familiar with hair loss. Check her out. http://www.eyelineher.org/
She has her own YouTube channel with videos for eyebrows and lashes, so check that out.
0 -
Hello All
Just checking in , I've been off the boards for quite a while. I finished all treatment in 2016. It will be 4 years this fall. I did well in treatment. Radiation I burned terribly, and had a minor stroke due to my carotid artery having radiation 'scatter' the neurologist said.
At the end of treatment, my doctors were genuinely happy I was still alive, since I was IBC/TN.... Don't google it.
I'm waving to those newly diagnosed, it does get better once you start your treatment plan. It gave me a sense of control.
Sorry to say though i sailed through treatment, my arthritis which was barely noticeable before dx, and during, now has me in pain most days. I never gave thought to the fact that chemo does damage good tissue and you may be left with 'ailments'. My hip gives me serious pain, and sometimes i have to walk with a cane. Overall. yes I'm glad I had everything offered, but long for my former life and mobility.
When I shaved my head I had dry patches, i moisturized with Gold Bond cream. It did the trick. I use Philosophy skin care for all else.
Vent, ask, this is what we are here for.
Val
0 -
LoveMyVizsla-Thank you for the welcome and for the link on eyebrows. I ordered a kit to help me a little, but I am all for learning how to draw them up.
The port pain has finally subsided. I was extremely frustrated because I had the MRI biopsy the same morning that I got my port "installed", and I couldn't take Ibuprofen for the port pain until 2 days later. I ended up taking Norco on those nights which helped, but I had to deal with the pain when I was at work because it puts me to sleep. I have been good with just Ibuprofen since then.
The biopsy results came in as a fibroadenoma on my left side, so thankfully I just have the tumor on the right side. I am struggling with fasting, because I am feeling like this will be my final meal before chemo. I feel like I won't be able to enjoy any of my meals for 5 months until this regimen is done, and something in me wants to savor the last meal. I have 1 1/2 days before chemo.
Question: I bought some Lemon Italian Ice cups for D-day. I was thinking it might help with mouth sores, but I don't know if that will help with AC chemo? I was also going to bring some extras for others, but I don't know if that would be "taboo"? I thought I could offer it for the nurses to offer to anyone who was interested.
Edit to prevent another post: I just read the top, and realize I never stated any of that info:
I am 43, diagnosed on Jan.11. Radiologist said stage II basal invasive carcinoma, triple neg. Will be doing AC every other week for 4 treatments, and then 12 weekly doses of tax.
0 -
Val-Glad you are all done, and that it has been 4 years. My oncologist mentioned that TNs who go in remission for at least 5 years have a significant lowered chance of reoccurrence after that time frame. I can't remember if she said it was lower than other types of BC or just in general. Thanks for sharing, and sorry you are having a difficult time with arthritis.
0 -
notdefined, In my case my appetite was weird for about a week of each chemo, and then I became ravenous! So out of 21 days there were 5 fasting mimicking and maybe another three or four days of poor appetite (despite hunger) when nothing seemed appealing... the other half of the time I ate 5 meals a day and enjoyed every bite. Wound up losing ~10 lbs - silver lining!
You will likely have periods of enjoying eating mixed in with the low appetite or fasting days.
0 -
Thank you for the info. I guess I still have this stereotype in my head of being on chemo and not being able to or not wanting to eat the entire time. I joked to my supervisor that I was going to lose some weight on the chemo diet, and get double d implants after this is all said and done. I have small, dense breasts, so to me it was funny. The cost and pain of cosmetic surgery was always enough for me to stick with my barely b cups.
0 -
Hi all. Just catching up on posts. Good to see you around again Val. Sorry your arthritis is worse. That's a rough hand to be dealt.
Welcome Notdefined. Your post reminded me that I also found the port pain to be more than I expected. I remember sleeping on the couch that night or maybe a couple nights. I hope treatment is starting off ok for you. Every one seems to have different issues- hopefully you won't have mouth sores. Both of my MO's have prescribed Magic Mouthwash when I encountered them and I found that very helpful. I believe that you said you have 7 yo twins? Mine were 6 when I was diagnosed and they're 8 now. Two years later, i'm NED and we're all good but bc is still in our world. We've enjoyed many, many wonderful times inspite of my diagnosis. KUP! I'm not here every day but I finally fixed my settings to get notices about PM's.
0 -
I think my port pain lasted about a week. As for appetite, mine declined, but I wasnt nauseated. I just could only eat about half of what I was used to eating, which wasn’t a bad thing, as I lost 12 pounds. I’m still below where I was when I started chemo, so yay! Some ladies gain weight due to steroids though, so watch out for that. The thing that bummed me out, spicy stuff burned going down, so I couldn’t eat it.
Good to see you, Val. Sorry about your continued side effects.
I see my MO for follow up in two weeks. I feel like I should be making a list of questions, but I can’t really think of anything. Anybody have anything I can/should ask being 3 years out
0 -
LMV: what a great milestone - 3 years!
0 -
Flynn-How wonderful that you are NED! I had to look that abbreviation up
Thanks for the tip on Magic Mouthwash. I will add it to my list. What gender are your twins? I have b/g, and my son is on the autism spectrum. I found it interesting how learning of my son's diagnosis felt so similar to learning of my diagnosis. The fear of the unknown is so powerful. My son is high functioning now (he was moderate to severe when first diagnosed), he is in general ed, and no longer receives any services. He is amazing. My daughter is amazing too of course. She is a big part of why he is where he is. LoveMyVizsla-I read about the steroids and weight gain. I guess I will just have to wait to see what my body decides to do. May I ask who is Vizsla? Is that who is in your picture? Congrats on 3 years out!
Well, I don't think that fasting is agreeing with me. I forgot to mention that I had my gallbladder removed back in September. Fasting is causing bright yellow diarrhea (sorry if tmi). I read that with no gallbladder bile is going directly into my intestines, and when I don't eat small meals often, it will cause a reaction. In addition, I now have a headache. Of course this symptom didn't happen until after I talked to my nurse coordinator.
My nurse told me today that I will likely be drowsy when I get my treatment. This was new news to me because I had read that I should be able to drive myself to and from appointments. I am kind of annoyed that I just learned this, and that it wasn't mentioned in my chemo class. Did you have a similar experience? Did you sleep through your treatments? Also, I asked about Ativan, because it was prescribed to me for anxiety and if I can't sleep. Does Benadryl work for sleep as well? I would much prefer to take that than something that is addictive.
Maybe I need to join a chemo group. Sorry, not trying to change the purpose of this group. Hopefully my questions aren't too annoying.
0 -
awesome, LMV!! I hope your appointment goes very smoothly. Pretty much every time I get within 10 feet of my MO, I ask if there’s anything new in the pipeline that we should think about. So far, the answer (other than giving Xeloda a shot) is no.
Appetite on chemo is a funny thing. My sister lost 20 pounds and is very svelte now. I gained 20 pounds and i’m a little fluffy. But, i’m getting diep and they will try to reconnect nerves. She has an implant that she’s not thrilled with and has no feeling in her breast. It’s really a mixed bag...Hopefully all of us get the meds we need to knockthe TN out!!
0 -
not defined, if melatonin works for you, take that. I am a great sleeper but I am taking it for the anti cancer properties. If you google Metformin TNBC the studies will come up. My naturopath has me on 20 mg per night which is a very high dose you would need to work up to. Because of the gallbladder issue, you may want to check all the tips you get here to make sure they are suitable.
oops I said metformin above - I am taking both of these drugs for anti cancer effects
0 -
Good morning ladies. Question for santabarbarian. Did you start your rads yet? I believe you were a little ahead of me in chemo. Just wondering how it is going, I start next week. Had my simulation, cat scan and mold done last week.
0 -
I just started Monday! Are you being treated at ProCure, by any chance?
So far, so good-- I love the facility and staff. It's very smooth... People are very on top of it. As one example, when I arrived on Monday, the man at the reception desk greeted me by name. (OK, he had my photo ID for me, so he could see I was me, but still!)
I am not sure if I mentioned it in this thread but my daughter lives in NYC, and a bunch of old friends too (I lived here in the 80's and I went to college on the east coast). So I thought the month would pass more quickly if I had people to hang out with a bit. The two proton centers in CA are located in 'friend deserts'... I came last weekend w my kittens and am staying at a hotel nearby and feel great about the decision.
My RO said that if I experience SEs it generally would be after 2-3 weeks. I have 5.5 weeks, I am being really careful about skin care and crossing my fingers....
0 -
Notdefined, a Vizsla (veeshla) is a breed of dog, a Hungarian pointer. That’s mine in my photo.
They like to give Benedryl before chemo, which tends to make one sleepy. I talked my MO into letting me drop it after I didn’t have a reaction to the drugs. I stayed awake through the infusions, but usually fell asleep on the way home, especially as the weeks went by. We had an hour and a half drive each way. My MO prescribed gabapentin for hot flashes, added bonus was it was GREAT for helping me sleep at night. I still,get hot flashes, but I gave up the gabapentin and adjust the thermostat in the evening when they hit me.
0 -
Hi Notdefined, I missed your post the other night. I have boy/boy twins. They can certainly be a handful but I love having them be best friends! That's awesome that your son is doing so well, now. I have 2 nephews on the spectrum. One nephew is doing great but the other has not progressed and probably won't improve without a breakthrough. My SIL has spent many, many nights up worrying about him. I've spent a good number of nights worrying about our future, so I can imagine the parallel you must feel. When I was going through treatment, one of my sons found having other moms pick them up and changes to our schedule very stressful. He likes a routine so I hired a college student to pick them up and handle after school for me and it was worth every penny. I drove myself to Taxol/Carboplatin. For my 4 AC I did have somebody drive b/c I did got a lot of antihistamines and I was drowsy. I also was in a clinical trial and drove myself then. My DH would come to the 1st of each treatment and then we saw how I did. Twice I got calls during infusions from school- about a sick child and a head bump so I told my MO, I wanted as few premeds as possible. On really bad nights, I used half a Xanax to fall asleep. On many other nights I did Tylenol PM which was recommended by my MO. It has an antihistamine that makes you drowsy and is not habit forming. You might like a chemo group but I'm also happy to offer suggestions! I didn't end up joining a group myself- I started with a clinical trial that nobody else was doing and I felt like I didn't fit in. Hope you're doing ok today.
0 -
Good luck on rads, Santabarbarian! Sounds like a great plan. I had not heard of proton therapy until a few months ago. Then I joined a Gilda's club here in town and it turns out there's a proton therapy place right next door. Seems like it's up and coming. I sailed thru most of rads- I was very careful on skincare but the last week, my skin started having issues. The weeks after were the worst for me. My RO said it can take 2 weeks to see full effect. I'm not trying to worry you but I was unprepared for my skin to deteriorate after finishing so that really caught me off guard. You do much better research than I do so I'm sure that you're up to speed on everything!
0 -
Flynn-I am doing AC right now, and I was quite drowsy last night at my first one. I was completely out of it, but today I feel close to normal. Having kids during this journey is hard. I definitely don't want my kids to feel like their life is going to change, but I know that some things will need to be modified.
0 -
I hope things keep moving smoothly thru this cycle. I would get tired again after my steroids wore off, a couple days after the infusion. One of my friends always says it’s not just her bc story, it’s her family’s story as it will impact everybody. Luckily children are very resilient and hopefully you will have many years ahead to see them flourish.
0 -
Thanks for the warning, Flynn; I was not aware that skin worsens after completion -- it will help me, to plan for that... my boob is pinking up already in one week, so fingers crossed.
Yes, only 22 Proton centers in the country right now. Many at teaching hospitals. Mine is freestanding. All they do is proton rads. (Reminds me of that SNL skit: cheeseburger cheeseburger pepsi pepsi.) I love this center. It's very efficient. I consistently am in and out in 30 mins. The systems they have are very smooth, very easy, and very patient-friendly. Nearly a spa experience. t's probably dumb to conflate the two but when everything is organized, clean, and on time, you feel like "they must know what they are doing!"
On intake, they made a mold out of a hardening foam which I lie in every time, to get me in the same position. Then they scanned me in that position so the computer could determine the best angles, etc to cover whole breast plus lymph nodes. In the 2 weeks between my intake and beginning rads, they made three amoeba-shaped cutouts (also via computer) - that go over the thing that delivers the beam, and direct it to where it is supposed to go and block it from washing over nearby tissue.
There are four brief zaps, each w a different set up. The zaps take a few seconds and the new setup takes a few minutes.
Many people here to get protons for unresectable tumors. I asked my techs, and they said they do have quite a few BC patients like me, getting standard post operative rads too.
I was surprised that insurance covered me for protons but being left sided and TNBC is enough to qualify I guess. And the center capped my co-pay to my out-of-pocket max under my plan, which I would surely have met this year anyhow. I encourage interested people to explore this option. I know UMD also does protons and they have a subsidized hotel/residence which patients can stay in. Probably other centers do too. Mine does not but there are plenty of cheap extended stay hotels close by.
0
