Calling all TNs
Comments
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lovemyvizsla my tumor was 9mm and I asked my rad onco about the shortened Canadian protocol that does 16 treatments. My rad said it was better to go with the whole 30 breast as a TN.
Twaz you can call your mo office on Monday to ask what type of chemo. My mo gave me info sheets on the chemo I was supposed to have before I signed the consent for them to give me chemo. And I totally agree with joining the April chemo group. It will be an additional support to what we will give you here. And best advice I got was take it 1 chemo at a time and think little side effects. The side effects thought was a good idea because it helped me be less scared and helped me not freak out over every little thing and think it was awful. Chemo sucks but having a positive mindset helps.
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just sharing a thought with everyone.
I feel cancer treatment goes on for so long! did any of you use counselling? was that of any help?
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I did with my second bout...but it was useless...
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4everstrong, YES! I started counseling in 2008 (first time cancer) and I still see my therapist. It helps a lot. I can cry without being judged, she gives me some pointers and in general I can't imagine not seeing her.
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I have done counseling for other things in the past but didn't get much out of it. No life changing a ha moments or realizations. So not looking at doing it for this. My son is going because he is a worrier and needs to learn some coping mechanisms. Not to say I wouldn't consider it in the future should the situation go downhill
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Regarding counseling...It has made a major difference for me in how I'm dealing with having breast cancer. But, I think that what's most important is the therapist.
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Twaz,
My blog (not really a blog - more like a static info download...see my signature line) has a topic on my experience with ACT chemo...what they gave me with it, etc.
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Yellow spot on breast - Paget's Disease? This morning I noticed a roundish yellow area on my other breast, not touching the nipple but above it. Immediately I consulted Dr Google and what came up was Paget's Disease‼️ So, now of course, I'm frightened and I'm sure this is what I have. I'm trying to be rationale and stay calm. Have any of you had such an experience? I'm wondering if it could be from the TC. Just hoping it disappears over the next few days. I just can't handle another BC issue. But, I guess this is the future...worrying that every little thingis BC related.
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Had #10 chemo treatment today. Two more to go. Came home and slept for 5 hoursI have been pretty good except no hair...and not just on my head...just thin eyebrows and eyelashes left. I should invest in stocks in the Kleenex company .Nose constantly running! And I feel like I am 150 years old. No energy , I take a shower and get dressed and it it time to rest. And no appetite either, nothing looks good.
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Praline-I stocked up on Kleenex yesterday! I have to use the lotion ones because my nose is sooo sore.
at least you can see the finish line! Had my 1st taxol last week and I am just tired. I hear you on the blahs. Nothing seems interesting. I eat because I am hungry but I'm not excited about it. Showering is TIRING. I think it's the heat.
Cathytoo- I have noticed discoloring to my armpits but more of a darkening. Could you have gotten a bruise??
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Hi, first time chemo patient:
What I wished I had done was a) get Taxol weekly instead of biweekly) and b) freeze my feet during the infusion. I now have permanent neuropathy in my feet from not doing the above. This is really bad--my balance is permanently affected. I have tried everything--from supplements to acupuncture. Also, if they prescribe ativan for nausea and sleep, be careful to take it sparingly as it is very hard to come off from when you take it regularly like i did.
Wishing you the best,
Peggy
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Praline, hang in there. You are almost done, you warrior. Just rest, drink a lot of water, repeat. Hopefully you are able to eat small amounts several times a day. I remember waking up in the night about 2 or 3 am...just ravenous. My son was 19 at the time, we raided the fridge together! But during the day just ate small amounts. Keep up your strength for healing ahead. Hugs to you.
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Praline, I hear ya. My weeks when I get cargo I feel horrible after the first two days. Food is awful, as is water. Nose is starting to slow down, hair is starting to regrow and fuzzy, but eyebrows and eyelashes are very, very thin. I'm very weak as well. Tomorrow is probably going to my only good day this week. Then Thursday I go back for Taxol. Hopefully it's easier, no double whammy. Sad thing is my counts will be low, but just good enough. Then next week, they will be too low and I will have to skip a week. Ugh!! Frustrating, just want to get this over. Have 8 more including this upcoming one.
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Hang in there you too, Milwmama!
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Yes, I have been icing my hands & feet for my taxol infusions (every 3 weeks x 6), and so far (knock on wood) no tingling, no neuropathy, no nails lifting. I also keep dark nail polish on because I head that keeping the light off the nails helps avoid the discoloration. I start icing 15 minutes before the Taxol starts, and keep icing until 15 minutes after it is done, switching out ice packs as they warm up.
I found some info on making my own DIY ice packs, very cheap. Instructions are here, if anyone is interested: http://www.instructables.com/id/Water-Bead-Ice-Pac...
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Has there been any research to support having Ovaries removed with TNBC with those that are genetic negative???
Just wondering now that I'm having to go thru chemo pause if I should just knock them out when I have my surgery (lumpectomy with reduction/lift). I've already had a hysterectomy at 38 and since I was young my Gyn wanted to leave them in. Now at 42 with breast cancer wondering if there would be any long term benefits?
I know TNBC is not estrogen based so makes me think there is no benefit other than my mom had breast cancer early and there me some genetic component not discovered yet which really does increase me chances.
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HausFrauMi my wife is BRCA2 positive so it made sense for her to have her ovaries removed. But just a heads up...her BS and PS would not allow both procedures to be done at the same time as her mastectomy. They said Oophorectomy/Hysterectomy is a "dirty" surgery (<- Their term) and they were concerned about the increased risk of infection that doing both simultaneously posed. Of course, my wife had BMx so maybe the protocol is different.
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ALHusband...Congrats on you and your wife on her 3 year milestone!!!
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AL - huge congratulations to you and your wife on THREE years!!!
Meadow - thanks for thinking of me. Hope you've been well! xo
Sorry for being MIA lately. I'm sad to say our friend who offered to carry a baby for us had another miscarriage on our second try. The infertility clinic we're at gives us 3 tries with a 90% success rate after that 3rd try...so we've got one more shot, but it's been pretty devastating and hard to understand. I'm in a Facebook group for the clinic and a very small number of women need the 3rd try...and only 2 out of 100 have not had success out of all 3 tries. On one hand this keeps the hope alive for us, but it's also hard to feel in the crap odds. Our friend has 2 healthy children and no history of miscarriages in the past. We're going on 6 years now trying to start a family. Slowly over the years our options keep dwindling. But I've shed my tears and I'm picking myself up. I was working from home, but that wasn't doing me much good anymore. Too much time with my own thoughts. I'm now working in an office part time, which is helping to keep me more busy and have more interaction during the day. My husband and I are going to start sitting down with some adoption agencies too. I have a feeling I'm not far enough out from the BC diagnosis, as I've looked into it before, but maybe we can get the ball rolling somehow. We could foster, but with an 80+% reunification rate with the birth parents, I just can't do it. At least I'm not there as of yet. Maybe later in life if we're still childless. Physically I've been feeling pretty good lately. I still get reflux flare ups once in a while, and I'm still dealing with all the lovely menopause symptoms, but nothing too crazy. We're starting to get into the 60's and 70's here in Michigan, which has been nice. I love all the seasons, but I'm definitely ready for warmer weather!
Hugs to everyone and welcome to all the newcomers. Sorry you're joining us, but this is a wonderful, wonderful group!
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Ally thank you for updating us on what's been going on. You know I will continue to pray for you guys & believe with you for the 3rd attempt when your ready. I'm so so sorry you have to walk this road. Makes me so angry!!!!! Cancer/infertility/losses of babies!
I'm glad you found something outside of the house to keep you busy and keep your mind off it as best you can. Your friend is so amazing to walk this with you guys. A real gem of a person.
Sending you my prayers, love & a huge hug tonight.
G
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HausFrauMi, I just met with the genetic counselor last week. If my BRCA comes back positive, I will be have the option of having my ovaries and tubes removed as well as a mastectomy (I had a lumpectomy). My rads have been postponed for this reason. She explained to me that the female reproductive organs are at risk and more difficult to detect until it has progressed. Therefore, the recommendation for removal. I am hoping my BRCA comes back negative as the thought of more decisions and surgeries is very stressful!
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Here is my rant for the day...a friend of mine has always insinuated that being not obese and eating a healthy diet, along with herbs will prevent breast cancer. Yes, I am on the fluffy side, BUT I am so sick and tired of people thinking that I caused this to happen. When I see other women, who eat clean, exercise religiously, do not smoke or drink...they can still with diagnosed with BC. I have a friend right now who is dying from BC...you know why?...she didn't want to lose her beautiful hair...and yes, she does have beautiful hair. When she was initially diagnosed about 2 years ago she refused all treatment...now she is dying. Another friend of mine...an older woman...didn't want to lose her hair and now she is gone with her beautiful hair...such vanity...I'm sorry I digress....
I just wish folks would keep their thoughts to themselves and stop looking at me as if I could had prevented this from happening because of my diet and fluff....
My BS said any woman can get BC...just from the fact that we are women...............
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shorfi--No $hit!!!!!! Preach it
and Triple Neg is not estrogen loving which is what happens more with overweight/obesity tumors from my understanding since fat increases the circulating estroge. But most of the women I see and know have not been significantly overweight OR are health nuts and exercise a lot --completely opposite of the risk factors. I would live bald for the rest of my days rather than save my hair and let cancer take over.
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AL- after talking to my breast surgeon and plastics yesterday -- I can have the lumpectomy and reduction/lift but not additional procedures. It's the amount of time under anesthesia. So I can have the ovaries removed just not at the same time. There is no urgency on having ovaries removed at this time. I was just thinking that maybe since I was already "under" I'd just knock it out.
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Ally, I'm really sorry you're going through this. It's not fair. You can try for the 3rd time when you're ready.
Shorfi, it's not our fault we got BC. We didn't do anything wrong and trust me, broccoli and green tea don't help either. As for your friends, people make their own choices for their reasons.
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shorfi, other than stress in my life, I honestly can't think of what else I 'did' to cause the cancer. We didn't do anything wrong! I've been eating mostly organic and grass fed beef/organic chicken for 4 years at home. Exercise religiously 4-5x a week, don't smoke, drink occasionally, and here I am. TNBC at 34 years old. So your friends argument isn't valid. I wish it were that easy to say it's what we ate, etc. But it's not.
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Ladies I think the key words to remember are "reduce", "reduced" and "reduction"...not "elimination". Exercise, broccoli, green tea, weight management, etc, etc, etc MAY all REDUCE the risk of BC...but I don't think any of them purport to ELIMINATE the risk of BC. I think lots of people tend to use those words interchangeably and they are vastly different. I don't think anything eliminates the risk of any cancer! Doing some things may REDUCE the risk.
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different doctors are of different opinions. I am TN/BRCA2+. I had a bilateral mastectomy as well as my ovaries and Fallopian tubes removed on the same surgical date, December 19th, 201
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My husbands cousin has had stage IV cancer for over a decade now. She is very thin, active and eats healthy. She isn't TN. I don't think she caused her cancer either. People just have no clue what to say to us, do they?
I was on a 3 week AC schedule, and my MO gave me a 4th week to recover before starting Taxol yesterday. Well crap if my lupus rash isn't trying to come back! We are hoping the taxol will knock it back down, but guess what will happen when that is over? Argh.
And in order not to sound too negative, my first taxol went well yesterday. I feel fine today.
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This discussion regarding hyst with ovary removal is very pertinent to me right now. I'm am going to have a hysterectomy due to prolapse of uterus (primary Problem), mild cystocele and mod Rectocele. It has started to affect my quality of life, i.e. Uncomfortable exercising, urgency of bladder and bowel, uncomfortable intercourse (feels like there's no room). scheduled for 6/1 although I'm going for a second opinion next week. My urogyn doc said and research I've done say ovaries are beneficial until your mid 60's even after menopause for bone and heart health s well as cognition and sexual health. I'm 2yrs post menopausal, tn and brca-. She said she'd remove Fallopian tubes as many ovarian ca are actually in the tubes and removing the tubes and uterus actually decreased risk of ovarian cancer as well even if keeping ovaries. My grandmother had ovarian ca (only dx right before death, never treated for it and she also had very high uncontrolled bp and strokes) there is hx of osteoporosis and heart disease in my fam and I have osteopenia and early stages of osteoporosis. MO said either way, if not a hormone+ cancer nor genetic there is no strong indication to remove ovaries and the heart and bone health, cognitive and sexual benefits etc of keeping them is very appealing. Remove if it will make you feel better and less anxious about ovarian cancer but I'm unsure and there's no definitive answer either way ugh. I'd love to hear from women that were post menopausal that had ovaries out after menopause and what were the side effects,sx etc
Btw, yesterday was 2yrs pfc for me! I'm doing well, working 3-4 days per week as per diem OT in rehab and feeling great (except for above issue which is kind of minor compared to bc I guess)
I think about all of you often although I dont post much anymore. All these forums have helped me so much and I have recommended this Website to many people my physicians as well
Thank you all
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