TRIPLE POSITIVE GROUP
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hapa - my result is about the same on Predict 2.1 at 62%, but Lifemath has me at 82%. In the Predict technical info it indicates the 15 year mortality predictions are not validated. Here is a link to that page:
https://breast.predict.nhs.uk/about/technical/technical
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Thank you SpecialK for the clarification. Even though i had thought no nodes involved initially I was suspicious once I read the report (neither OC or BS mentioned it). I would rather know because it makes me a little more vigilant about watching for signs knowing they could have spread. I did run the model with both and only made a 3% difference in the outcome so really not a big deal in the long run.
I actually started therapy before meeting my BS, my OC wanted me to get started ASAP since due to a mix up in scheduling my appointments were delayed after diagnosis. Now I think now I understand why the BS questioned my OC about starting treatment before she had a chance to meet and review the case. I hadn’t heard about doing a sentinel removal while port was placed. That might have made sense in my case since I had two tumors plus DCIS.
While I’m truly sorry you are on this site due to BC, I’m selfishly glad because you provide us with so much info that helps us understand the issues. Hugs
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MACTAZ, I could not agree more about SpecialK! Even though I'm not a member of the Triple P Club, as I told SpecialK once in a PM, during the dark days of chemo when steroids prevented me from sleeping, I read this thread from beginning to end. I learned more about the HER2+ part of my tumor here than any other place, and primarily through SpecialK. What impresses me most is that she and others like her stick around to help those coming behind, and when you're first diagnosed, you need the voice of reason!
MACTAZ, you and I were diagnosed the same week and like you, I started treatment immediately because of the size of the tumor--so there's a lot we will never know. A year later, things are so much better, but it doesn't mean I don't have the rogue thought (for example), "What if there was cancer past the sentinel node?" I had my last Herceptin yesterday and I told my MO I never new I could behave so irrationally--mostly just between my ears and quietly--but hands down, it's the thing I loathe most about breast cancer. It messes with your mind, not just your breasts.
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Thankfully I am eight years away from surgery but I have always been curious about this part of my pathology which concerns tumor size. I had a well defined tumor located behind my nipple which was very close to my skin’s surface. It measured 1.7 cm. My pathology report stated that scattered cancer cells were contained throughout the nipple aereola complex with no symptoms such as ulceration. As a result 1 cm was added to my tumor size resulting in 2.7cm. I wondered if anyone else has experienced this and if this was customary in calculating tumor size in a case such as this.
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Tresjoli2 _ a blanket for chemo, silk pillow case for bald heads, small notebook to keep up with questions and information, water bottle for drinks,
warm socks with skid proof soles - easier to wear in the chair than shoes, snacks - salty and sweet, candies - I liked sour things.
Anyone taking HP - have you had any problems with cystitis?
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Beesy, isn’t it amazing how many things we all have in common.
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Thanks SpecialK! I guess I won't drain my 401k to buy a motorcycle after all.
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thanks for all the tips! I put together a lovely package for my friend that she'll get on Monday. I'm heartbroken she is following in my footsteps, but so happy I can help guide her through it.
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Tres - Your friend is very lucky to have you! I know that the single most helpful thing for me, especially when I was first diagnosed, was the support and understanding of one of my girlfriends who had been through at least some of what I was experiencing.
This board was way up there, too.
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Pamela, that's so thoughtful. Looks like you got it covered, but maybe Kaopectate? Projeta causes diareah. Just a thought.
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Pamela,
I’m late, but I loved Zilactin-B for mouth sores.
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which brand vitamin D3 do you all recommend considering it needs to be taken for lifetime?
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Special K - THANK YOU for the links. My doctor likes the Predict calculator too.
Tresjoli2 - I might suggest tea tree oil to put on her fingernails. I had TCHP and it can cause your nails to lift off their beds. I'd use it on toes too, as I did not, and I have trouble with two of my toenails now. What a very kind and sweet thing to do, you are a wonderful lady! Best wishes to your friend, and everyone.
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Hello all,
I'm new to this thread. I am 37 years old, and was diagnosed Memorial Day weekend. I just started my first TCH chemo infusion on Aug 15th. It's been a pretty hellish road thus far. They gave me Neulasta which apparently my body hates and has caused every ache and pain known to mankind in a few short days. The nurse at the cancer center seems to think I should turn the corner soon. Lets hope!
I have a couple questions. My ER & PR percentages are low. ER 10-15%, and PR 1-2%. The oncologist is still suggesting hormonal therapy. However, I have pretty severe endometriosis, and he doesn't feel Tamoxifen would be a good fit for me even though I'm pre-menopausal. Any ladies tried the Lupron combined with AI's? If so, how bad will the side effects be?. He said we could also do an oophorectomy but that seems very extreme to me given my low numbers. I hate the idea of being menopausal before 40.
How long after starting Taxotere does it take for hair to fall out? I think I am going to shave it off prior. I feel like losing clumps will be more traumatic than taking control over it.
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Tresjoli, I found disinfectant wet tissues quite usefull during chemo, apart from the things already mentioned.
Hapa, for my case, predict says 75% at 15 years and Lifemath says 88%.
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Neeli, this is the brand of Vitamin D I bought, which also includes Vitamin K for better absorption: K2+D3
Knowing that Vitamin D is a fat soluble vitamin and can reach unsafe levels in our bodies, I wrote my MO two weeks ago saying that I'd started taking this supplement less than two months ago and wanted to have my levels tested when I was coming in the next week. Turns out I either did not need supplementation or I am a good metabolizer of D--my levels were sky high and I was chastised by the nurse practitioner and my MO.
I want to state for the record that I received ZERO credit for requesting for the test!
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Thank you, Beesy_The_Other_One !
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Thanks guys - a lovely compliment! I have long said any opportunity to help others that come behind me is the silver lining to this experience!
annie60 - are you on anti-hormonals? If so, that is the more likely culprit in cystitis - the lack of estrogen can cause this.
hapa - yes, no motorcycle. For a number of reasons, lol! I read on another thread of your family connection to bile duct cancer - same here, my brother. He was diagnosed less than 2 years before I was diagnosed with breast cancer. It was out of the blue, super aggressive - as I am sure you know.
neeli - I like the Garden of Life products and at one point I used Carlson Vit D drops because I could add it to my morning coffee, although I am on prescription Vit D because I have a lot of difficulty getting my levels out of the teens.
beesy - my response to the scolding would have been to ask why they didn't test your Vit D level as part of your routine workup? As far as I can see, that looks like their bad. My MO tests twice a year. You don't know what you don't know, right?
autumn - have you had any genetic testing done? I am asking due to your age. My hair hung on for two full infusions out of six. I had cut it short because I had a hairpiece made from my long hair, but I had normal looking hair for 24 days after starting chemo - I shaved it when it started to fall out but wouldn't have wanted to shave it any sooner. This is a personal choice - many do exactly as you indicated - shave it early so as to not deal with the emotional trauma of the loss. I put my shaved hair outside in the backyard so the birds could use it for their nests.
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I just started Anti hormones today, After stopping the B complex, the cystitis cleared up. I plan on added a reduced dose back next week. We'll see what happens.
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annie60 - interesting, I never knew that there is an association between B6 and IC, until I just now looked at it. Have you considered a B complex vitamin without B6? This can also be connected to not hydrating enough while taking B6, so if you continue with it make sure you are drinking enough. I did have a pretty serious UTI during chemo, which irritates all soft tissue and particularly the soft tissues with rapid cell turnover. So, this could be due to a combination of assorted therapies too, keep us posted as others may have issues with this too.
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SpecialK, you can imagine my surprise, knowing how most women struggle to raise their D levels, that I was so high. Don't worry--you can't know this about me, but I defended myself adequately. I was diagnosed a year ago yesterday, and if they ever tested for Vitamin D, I am not aware of it, but he assured me he'd be checking my levels every time from here on out like I'm on Vitamin D probation now (😂). I was honestly dangerously high, and it will take some time to get this out of my system, but I'd done a lot of reading that convinced me that most women could take that much for a couple of months before being tested. After all I'd read about the link between Vitamin D deficiency and breast cancer, I could not imagine that I wouldn't be low. I mentioned it mostly for those reading who are thinking of taking it--to do over, I should have gotten a baseline first.
Autumn, my daughter fulfilled a lifelong dream when I had her shave my head when my hair started falling out, but throughout TCHP, my hair actually kept trying to grow back (not real amounts, just enough to look like a Dr. Suess character) so I would shave it now and then. Sometimes I wonder if I'd just cut it very short and not shaved it, even though I had two huge completely bald spots in the front . . . when it did start coming back, perhaps it would have come in faster as if it had a head start? I'm eight months post final chemo and I have just over 1 inch of hair, but as I learned recently on this thread, that's probably from Herceptin, which I just finished. Autumn, are you taking Claritin for the Neulasta bone pain? It helped me (not Claritin-D). Also, as an encouragement, my first chemo was the worst by far and only later I learned they gave me a loading dose so my side effects that round were magnified. I hope that's the case for you!
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beesy - they should have tested you, no breast cancer patient should have to ask - particularly in light of the anti-hormonal therapy so many of us are asked to take as part of treatment, and because chemo can also wreak havoc. Lol - I am considered an "assertive" patient, but my MO actually likes that about me - I am very lucky to have him.
autumn - echo beesy on the Claritin (not Claritin D) for Neulasta pain. Start it a day ahead, then continue it for several days. I forgot it once and even though I took it 30 mins after the injection I had way more pain on that round. The combination of Claritin with an nsaid can also help - particularly Aleve if you tolerate it. As always, run this by your MO first.
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Autumn- I was diagnosed in July, I’m 35 years old. I shaved my head this past weekend, 17 days after my first chemo, it started falling out really bad and I was sick of having hair everywhere. It has not been as bad as I expected, no tears and I’m just wearing my shaved head all over the place. I bought wigs and head coverings, but haven’t used yet. I did take Claritin day before chemo and for 7 days after and it helped with bone pain I think, but it’s still pretty painful. Everyone seems to have side effects to a different degree I think. Mine almost all went away on day 10 post chemo, and I was able to go back to work, besides fatigue, still have that. Next chemo tomorrow.
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MO wants to change me from Herceptin to Kadcycla since I still had some live cancer cells present in the lumpectomy tissue taken out post chemo. Anyone willing to share their experience? Herceptin only has been a breeze
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Autum, so sorry you have to be here but it is the best place to help you get through. My hair started failing out slowly within 2 weeks and more around that 17 day mark. With everything you deal with in the beginning I was struggling the most with hair loss. So I went to a salon after the 2nd infusion and got a short haircut, they did it for free, so kind. Then my friend came to visit after the 3rd infusion and brought me a special package with a wig and several hats. With her help, we buzzed off the rest of my hair, I was so glad I did that. I felt a little strange at first going out, people do look at you but with kindness. People were always so nice and friendly. I’m now also 8 months out and my hair is about 1 1/4 inches, growing slowly due to herceptin but it is coming back. We are here for you.
Beesy, congrats on your last herceptin. Mine was three weeks ago today. It is weird after a year of going in every three weeks for infusions not to have that on my schedule. I’m still waiting for the darn nose drip to stop, not yet.
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Neulasta is evil. Like everyone else has said, Claritin, I don't know why it helps, but it does.
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Re: the drippy nose, this morning was the first time I thought, "Hey. My nose isn't so drippy." My last Herceptin was May 17th. Someone else (probably on this thread) said it took her about four months, so just as a heads up, I think three-four months of lots of Kleenex after Herceptin is maybe what you can expect.
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Here is the deal on why Claritin helps post-Neulasta injection. Neulasta works to boost WBC (white blood cells) by artificially stimulating growth of new cells in the bone marrow. The largest bones in the body have the most marrow, thus the pain - often in hips, shoulders, etc., although some get pain almost everywhere. Claritin (loratadine) eases the edema that happens as the marrow expands to accomodate those newly created WBC. Yay! FYI - some oncologists also approve double the regular 10mg dose, but again this is why you should check before taking it with your individual MO.
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Neulasta is evil and, Inger, I am glad to know that. My last Herceptin is in November. Congrats to you and the drippy nose - bye bye drippy!
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Jaboo-from your history I saw no radiation. It is possible to avoid it with her2 positive? I am triple positive had chemo and bilateral Goldilocks mastectomy. I am wondering if there is chance to skip radiation. I will be taking herceptin and hormonal pills .
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