Calling all TNs
Comments
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VLH, oh wow, that's horrible that your lymphedema got so bad! I've got none right now. I didn't realize that you can get lymphedema even without targetting the axilla. Yikes. I have access to most journals through an academic library ..I just vacillate between researching things myself and then shutting everything down and saying "you know what, you're the doctor, you went to school for forever to become an oncologist. Tell me what you think."
elindy - thanks for checking in!!!! I love hearing from people on the other side of treatment! 5 years - YAY!!!!!!
hollywood - stupid strep! Glad everything is sorted & you're on the mend. The hair thing really affects all of us differently. It has not bothered me at all to lose my hair or be bald. And already, halfway through taxol, my hair is starting to grow back. Definitely looks like a kiwi right now. I might end up shaving it again until all the growth is more even. I do miss my eyebrows and eyelashes just because sweat & sunscreen run into my eyes. I need headbands and bandanas when I work out. Be gentle and patient with yourself. It will be ok.
oh & my one chemo tip is to bring headphones & audiobooks or podcasts or music - I really didn't want my dh or anyone else talking to me LOL. Love him dearly but conversation was just not what I need during treatments. I like that he's there but I don't want to talk. At my center we have good wifi & I can stream netflix on my ipad during treatments...0 -
Thanks Moth!
My daughter bought me an IPAD and downloaded her netflix and Itunes to it. I laughed picturing a kiwi head.
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Hello to everyone.
I lurk more than I post, but here goes. Please don't take anything I've typed personally or negatively. Just voicing my experience. Hoping it will help. When first dx'd, some of the 'oldies' on the thread, gave me some great advice. Our dear Annie, our brave Div and others. My dear Cathytoo Sylvia, Meadow and Titan who started this thread. So many others. Hello to all.
VLH i can relate to how you feel looking back on treatment. I now have lymphedema. It is controlled with weekly therapy, and a Flexitouch machine. It's a targeted massage, programmed to your problem areas. My radiologist as well as MO were diligent about early detection. They sent me to the lymphedema clinic BEFORE i had symptoms. Measurements were taken. It is standard at our cancer center. So I feel you on looking back and maybe going with a different road. Or coming to the same decision but after more digging and searching.
I only share my personal view and experience to share, not knock anyone's view or opinion or approach.
In my support group of various stages and types of bc, we have a couple of ladies with severe lympehdema who had no rads, and only had sentinel node dissections. One with rads, and only a few lymph nodes taken, they were negative for cancer, so no rads to lymphs, but she has stage 3 lympehdema. Then you have me, with numerous nodes taken, 33 radiation treatments, 4 bolus, and definite lymph rads. I have low level lympehdema in my arm. So you never know how your body will react. Some don't have lymphedema. I truly did not think about it until 2 years after dx, because my hand was swollen, and then my arm. Our bodies have their own way to deal with this onslaught of poison, rads, meds and cancer.
I had BC on my other breast 28 years ago. I had a lumpectomy, rads,(10) and tamoxifen. At the time there was not a lot of talk of what your positive or negative receptors were. Based on what I had at the time, I was comfortable (sure, insert word) with my treatment at a major university hospital. . Until, a few years later. I looked back, read everything that came out about BC, and second guessed myself into some serious anxiety. As time passed, my anxiety got better, then articles started coming out about recurrence. What? . In early 92 when I first had BC, you worried about them 'getting' it all with surgery. Because the biggest problem back then, was dying soon. If they 'got it all' then you were in the clear. Or so we thought.
Looking all the way back? I would have had a double mastectomy at 31. But then I probably would have gotten it in my chest muscle or some obscure place. I have a very close friend who had a double mastectomy, no rads or chemo, just tamoxifen for 5 years. She just recurred. After the 5 year mark. Now they are prescribing tamoxifen for 10 years. Sheesh. I can't keep up!!
I can't look in that rear view mirror, because that rest area has been passed.
So my most current dx in 2015, with idc and ibc, I flew to MD Anderson, for a 2nd opinion, then to Mayo for a 3rd. They both based on all my tests, scans, etc, (this was financially back breaking, but i had help) my center in NC was spot on with the recommended treatment. So in my case I made my decision based on my research. Met with Naturepaths, herbalists, etc. Do I look back, and wish some things were different? Ofcourse. I constantly ask my therapist (psychologist) will this new anxiety get better?
In my opinion , you have to do all the research that you feel is right, consult, 2nd and 3rd opinions, etc, but at the end of the day, you have to be somewhat comfortable with your decisions about treatment. I don't think we are ever comfortable or for lack of a better word than comfortable on-board, or sure, , but it's the only word that comes to my fingers . As daunting as that sounds, its what matters in your long run In this horrid, life altering time in our lives, can we ever be sure? Plus there is so much information out there!!!. Dr Google is awful, TV personalities that have bc, look wonderful, have reconstruction, major surgeries and then look as if nothing has happened. An entirely different discussion.
. I had an experienced ultrasound tech share something. She was a triple bc survivor. she said: Take whatever advice you are given, use what works, but file away the rest, you never know when you may need it or use it. I asked her the stages, time frames etc, she said something I'll always remember: Does it matter? I've had it, had treatment, and am trying to live as normally as possible. My new mantra
We come and go on this and other threads, i'll never forget the support I got when I was burned to a crisp with rads, or sick with chemo, or scared to death the entire time. Thank you to all.
Oh for the record. 28 years ago, I thought I was DONE with BC. No such thing.
thank you for letting me vent and post.
Val
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((Val)) I have beast lymphedema, and that flexitouch/physiotouch machine is awesome! I had manual lymphatic drainage therapy, cold laser on my scars, and the physiotouch. And kinesio tape. I think the physiotouch did the most good. I’ll see what my RO says in August, whether she think she I need to go back to PT again or not. I even looked into buying my own machine, but it isn’t available in the US yet. Best wishes to you.
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CallieGirl
I am 8 years out and doing great. I revisit periodically, usually lurking or private messaging. You asked about TN and recon. Everyone is different. In my case at diagnosis I did not know I was BRCA1 positive, but wanted to treat it aggressively. Recon was not an option at the time of the initial surgery simply because my team felt we didn't have time to co-ordinate with a reconstructive surgeon. I wore a prosthesis until I was able to pursue a prophylactic mastectomy on the other side and have not pursued reconstruction. This works for me. I was 48 when diagnosed, happily married, and busy working, traveling, and playing. If I ever decide to go down the recon road I can. For now I am too busy enjoying life! Honestly I think people notice my smile before my chest!
Rads were not recommended for me at the time.
This is a great place for information and support.
Best wishes.
Jody
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Ohmigosh, Val, 28 years later you're dealing with this cancer stuff again? 🙄 I'm so sorry.
I have a Flexitouch pump and have used it 5-6 nights per week since November. I can see an obvious temporary decline in swelling with my compression sleeve, but can't tell that the pump helps that much. I wish the garments were washable. Despite being well past menopause & not taking hormonal pills, I sometimes get hot flashes when wearing my "Michelin Man" suit. It grosses me out that I wake up sweaty and can only spot clean them. (I use the pump at night.) I hate to think how "cootified" they'll be in a few years. Yuk!
Lyn
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I always want to say so much more than I do when I’m at the follow ups. It’s because as soon as I start talking they start minimizing my SEs or concerns. Throughout this process I’ve had SEs that are not “the usual “. So yes, I have severe muscle pain in my shoulder three months after chemo - don’t tell me that it isn’t possible for 5 months of poisoning being the cause! It is frustrating. But I usually don’t argue back.
I must say I don’t have any guilt at this point. Maybe when I get further away from it - it’s all still so fresh. I do however have great sorrow when I read on these threads all of the wonderful women who are dying from this dreadful disease.
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Just wanted to pop in and thank those that responded in regards to reconstruction. My MO isn't totally on board with me needing Radiation, so off for another RO opinion.
I'm down to just 6 Taxol treatments left and am starting to see some light at the end of the tunnel!
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Valstim52....Hey Val...Seems as though i’m Just lurking these days on the site. But, every time I come on, there you are sharing your own experiences and giving support to the newbies. We’re only 2 1/2 years since we first “met”. I think of cancer recurrence now and the because this is the time when we TN gals are “most likely” to see a recurrence. But, in actuality, I’m moving along, feeling great, but missing my husband who died right before I got my diagnosis. I don’t think I would have been as strong if he had been here. I think of our “group” often and wish there was some way for us to meet up somewhere. ❤️
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So I know it’s been discussed that many of us feel anxiety about life post cancer diagnosis. Do you feel like you respond appropriately to other people’s stories? A friend started a cancer support group near me after she got TN several years ago. A woman that I know from the group just found out she is having a TN recurrence just 2 years post treatment. Her kids are near my kids age. I’m so upset about this but the truth is that we’re friendly not super close. My husband was sorry to hear the news but he’s not thrown the way I am. I feel like I’m out of balance.
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Flynn I get it. Whenever I hear of somone who has same stage as myself or have small kids have a recurrence it throws me way off. It has gotten better over time as I am four years post end if treatment but honestly I think it is totally normal
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Calliegirl - isn't it a great feeling when you are close to the end of chemo?! congrats! What are your plans for surgery? What does your surgeon think about radiation? Are you hoping to avoid it? Since I had a lumpectomy I had no choice but to get rads.
Flynn - your reaction seems absolutely legit to me. When someone with a similar story to ours is hit with the very thing we fear for ourselves it'd bear nearly impossible to stay detached. It's just too easy to imagine yourself in that bad predicament and feel anxiety. My only advice is to keep reminding yourself to be grateful that it isn't you with the recurrence and be as supportive of her as you'd want her to be of you if the roles were switched.
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VLH/Lyn, May I ask where you got your Flexitouch
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I’m glad you ladies don’t think I’m unbalanced to react so strongly to someone else’s news.
I’m reaching out to her. We’re relocating in a few weeks so I won’t be physically here for the next leg of her journey but I’ll see what I cando in the meantime.
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VL22 , I'm so sorry that your experience with nontraditional SEs is minimized at your center. I'm treated with such respect and kindness at my center and that's what everyone should have. Is it the whole center that is less responsive? Or is it individuals? Is there any chance that you could see a different oncologist at your next visit? Do you think if you started your visit by saying something like, "I want to talk about my side effects and I need you to listen and take me seriously," that they would respond?
I had shoulder pain, too, but as a result of radiation. Shoulder pain is very common. The physical therapist I see specializes in breast cancer with shoulder pain; that's her whole practice (some patients also have lymphedema) so it is very common.
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Hello to everyone; I'm reading to catch up and thinking of you all. Just an update. I've now had cataract surgery on both eyes and one result is that my problems with chemo brain have lessened maybe as much as 50%. I had suspected that my vision problems were exacerbating the chemo brain and vice versa. I saw two ophthalmologists who both said that my symptoms related to vision could not be explained by the visual measurements since the readings were just at the threshold for cataract surgery. My oncologist has a young patient just entering the medical research field. She hopes to be able to study how chemo damage relates to sensory input--vision, hearing.
This is a long way of saying that if you experience chemo brain more than a year after end of chemo treatment, you may find some relief by having vision and/or hearing checked.
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That is very interesting, ATerry. I agree about seeing a different care provider that will listen to you or that you get along with. My first lymphedema PT couldn’t see my symptoms, even though they were clearly visible. She also didn’t have but three months experience with cancer patients. I switched to a different one and she made a vast improvement in my condition.
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aterry - thank you for your thoughtful response. You’re right - why should I leave my appointment not being heard? Throughout chemo I met with the physicians assistant who is really wonderful. From last chemo on however I’ve met with the MO only.
I’m going to call tomorrow and request my next appt be with the assistant. My center is really wonderful, but my MO has a strong personality which just doesn’t sync with mine
Also I’ve done enough research recently to know how I want to proceed with SEs that I am having. I need to not let myself be minimized.
Thanks!
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Lovemyvizsla my kymphedema clinic liasoned with my insurance company to get my machine. It’s made but Tactile Medical. They have generous payment plans if your insurance company denies them
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Flynn of course we don’t think you are unbalanced. We all react to news in different ways. I love one of my support groups, but had to take a step back because most were Stage 4. It made it hard to get support as a lot of my early concerns were brushed aside because I was not at age 4. So I backed off. Others stayed. We all drive our cars in this cancer trip differently. So never feel bad about how you feel.
That’s why I love this thread.
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HERCEPTIN + NEUVAX for TNBC?
I don't fully understand the below article, but it seems to be saying that there are promising results for node negative TNBC patients in a study with Herceptin + NeuVax. Does anyone that is more scientific than me understand what they are saying? Herceptin is usually for HER2+ patients, so that's where I'm confused.
Thanks Beckham2 for turning me onto the article. Another thing to discuss with my MO. I think I am starting to be the squeaky wheel.
https://aonnonline.org/news-and-updates/1026-break...
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Cathytoo forgive my 'late' response. Yes I hate that we are told that most recurrences happen between year 2 and 3. I was directly told right at dx that it was not looking 'good' for me to make it to surgery. They were so 'sure' that I didn't meet with a RO until close to my surgery because of the dire prognosis.
My IBC was moving so fast, they were not sure chemo would slow it down. Well, it did. I achieved a complete PCR. So afterwards, when I had scans after treatment, including a brain mri, my MO said forget the statistic of between the 2nd and 3rd year recurrence possibility. she has had too many to recur sooner and later. She told me to enjoy my NED (no evidence of disease).
I didn't need her to tell me, but I respect her opinion. I will never 'not' worry about recurrence, but hopefully it will fade as I get years under my belt.
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Valstim52 - Thanks for writing two years out. I'm on 9/28 radiations, headed for Xeloda and hopefully a clinical trial of Keytruda after that. Seeing someone with a diagnosis similar to mine and such a good attitude is really helpful.
Paula
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rdeesides
Today was a chemo day so please forgive me if I don’t make much sense. Chemo brain is real!
I read the linked article and looked it up on another TNBC website as well. The clinical trials required a HER2+ + or ++ to qualify. They are low expressing for HER2+, not a true TNBC. Those women wouldn’t normally get Herceptin, but the combo with Neuvax looks synergistic for them.
Those of us with true TNBC wouldn’t qualify and likely wouldn’t receive any benefit from that treatment. I was excited when I started reading it, but realized their use of TNBC was misleading.
Now I can count on one hand how many Taxol are left! Wednesday I have another PS consult. Really hoping the third one is the charm as I need to get a surgery date booked
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I've joined the TNBC club as of today. Received confirmation from my Oncologist that my HER2 status is negative (FISH). Starting chemo this Friday, dose-dense AC-T. The worst part was waiting on all the test results. Now that I know and have a treatment plan, I feel relieved. We'll see how I feel on Friday for my first treatment.
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CallieGirl - that makes sense. That is what I understood too, So exciting that you can count your Taxol on one hand. That's a nice feeling.
HockeyChick - Sorry you are here, but it does feel good to get started. AC was kind of hard for me, but actually in retrospect I think it was ok. Just took some planning on knowing when I would feel tired and as long as I allowed myself the time to rest I was good. All my off weeks were good too. Let us know if you have any questions! Between all of us I think everyone has experienced most side effects probably. Be sure to eat ice during AC. Mouth sores were my worst side effect the first round because I ate the ice too lazily. The next three rounds were ok because I was more diligent.
R
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Hi HockeyChick, hello fellow Canadian.
Sorry you find yourself here but welcome. Be diligent with all your anti nausea meds; during the first round I'd recommend you take them whether you think you need them or not.
I didn't eat ice during AC and yeah, I did get mouth sores at first but the prescription mouth rinse from my MO was great and so long as I used it, I was fine.0 -
HockeyChick--
So sorry for your diagnosis. You can do this! I had a breast removed and 14 rounds of chemo. Hardest thing I've ever done. But I'm a true believer that if I can do it, you can too. YOU GOT THIS!
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Thanks, appreciate the feedback. I live alone so I'm a bit worried about how I will react to the chemo. My family lives out west and can't be here. It sounds like the SE are manageable if I am on top of my meds (and ice chewing). I will be off work so can rest when I need to. One less thing to worry about. I want to avoid hospitalization. Glad that I will be on Neulasta.
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Hello Hockeychick
chiming in with others, get a script for magic mouthwash, it's fantastic on mouth sores. Also, I brushed and rinsed with Biotene(?) products. Between the two it really helped. I didn't ice my mouth. During taxol, I used frozen peas in a cooler for my hands and feet. It did help, though I wound up with a wicked case of neuropathy. Pushing 3 years out, no signs of neuropathy.
Rdees and others, those articles always reel you in when they throw TNBC in there, give you hope and then you see that it does not work on true TNBC cancers. Unfortunately the chemos are the front-line for us.
Ask away. There are those like me that had the kitchen sink treatment (4 chemos, mastectomy and 33 rads) and others with treatments between.
I'm doing really good now. Was it rough? Yes, but very doable.Not that I would want to 'do' it. These boards are a lifesaver, but stay in your lane.. I look for positive threads, and definitely don't lurk over to the later stage threads. Thats just my way. I was told to do so, by a 10 year TNBC survivor. It's true. I caused myself lots of anguish by following some that are/were stage 4.
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