TRIPLE POSITIVE GROUP
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is anyone with her2 positive tumour after undergoing chemo and mastectomy could avoid radiotherapy?thank
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SpecialK, thank you for that, I always wondered how it worked. I wish there was a "like" button here
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big peaches - you're welcome!
margun - radiation is generally used to treat locally, breast and axilla, if margins are close, tumor was close to skin or chest wall, for lumpectomy, or if there are positive nodes. I had bi-lateral mastectomy with excellent margins, but did have positive nodes which prompted complete axillary dissection. I asked both my breast surgeon and oncologist - twice - whether I needed radiation. Their answer was consistently that I did not. I don't feel that having a Her2+ tumor necessarily has any bearing on the decision to treat with rads. It sometimes does with triple negative patients because there is no anti-hormonal opportunity.
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SpecialK- thank you for taking your time and answering. You give a a glimmer of hope that radiation could be avoided. I had Ac plus taxol treatment so harsh on my body and I have still some on and off bone sensitivity in lower leg. I am recovering from bilateral Goldilocks mastectomy and I know I have to continue herceptin and start hormon pills. I hope avoide radiotherapy. I do not have yet path report but my surgeon told me all nodes he took were negative. That is why I am hoping that I will not need radio. Thanks again and may never this ugly disease tu he’s any of us and anyone
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Paloma1211:
I also had residual cancer per path report at the time of my mastectomy, so I was changed from Herceptin & Perjeta to Kadcyla. I had the first dose on Aug 12. I was a little more tired than usual for the next couple of days & still had the lovely drippy nose! Otherwise, it wasn’t bad. I have to do a total of 14 doses, so we’ll see if it stays manageable
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Thank you ladies for all your wonderful advice.
SpecialK - I did the genetic testing, and they all came out negative. I was actually taking the Claritin (2 days pre, 7 days post) as well as Tylenol, and the bone pain was still pretty debilitating. I called Wednesday and they said I could switch over to Aleve for pain relief when originally I was told not to use NSAIDS. I have heard about doubling the Claritin, and may ask my MO before the next round to see if that makes any difference. I'm day 9 now and feeling much better. It appears I did turn that pivotal corner.
I think I'll wait another week and see how my hair is faring. My youngest son has preschool orientation next week, and I'd rather not look like a cancer patient for that. I did buy a wig, and my SIL who also had BC sent me a few scarves and wraps, so I feel prepared supply wise for that step.
Met with the RO this morning, even though that step is a ways out. Need to make the decision between 4 weeks or 6 weeks of treatment. The guidelines say 6 but as he said, the guidelines are based on trials and studies of women older than myself. The under 40 crowd is vastly underrated in trials and studies, and they tend to just throw everything and the kitchen sink at us because we have such a longer time experience recurrence. I'm leaning toward the 6 weeks. My husband asked the RO if it was his wife, what choice he would make, which I thought was a good touch.
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Autumngal you know it's the same total amount of radiation under both protocols, right? The four-week course is more each day and so a little tougher on your skin. Many women who don't have chemo do that (like me in 2016). I assumed it would be the same last year (even planned a vacation around it!), but my RO told me the skin is more vulnerable after chemo so they do the six-week (gentler) course.
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@Autumn gal that was my experience with Neulasta as well. HATED it. Despite all the claritin and Tylenol I had pretty debilitating pain in my low back/hips that throbbed down my legs and made me writhe around sleeplessly most nights, but it only lasted a week (days 3-9). It was bad enough that I considered asking my onc if we could just skip the Neulasta next round (my WBC counts have been really high at all my labs so far, we'll see what they're like @ my next chemo Monday), but if some women have had improvement with doubled up Claritin I'll ask about that.
My hair started coming out on day 16, and I buzzed it pretty short that day but left some length in the front to show under hats (the obvious lack of hair under a hat look made me feel like I "looked sick". But the hair I have left doesn't look like it will last long...
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Hi everyone, by the way. I've lurked through this triple positive thread for awhile now, to research/educate myself in prep for chemo (what a great resource it's been!), but it felt awkward to "pop in" on such an old established thread.
I'm 43, just finished my first cycle of neoadjuvant TCHP with round 2 on Monday. I've felt pretty good the past week besides lingering diarrhea (seems to be either that or nothing at all for me on immodium) but I'm dreading the next round to the point of insomnia, esp that darn Neulasta pain!
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I had TCHP HeartShapedBox. Neulasta is evil. You can take Claritin to help with the bone pain. and I used tea tree oil on my fingernails to keep them from coming up off their beds. Hugs, you can do this!
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Margun, I skipped radiation because I decided to do a BMX. I guess it can be different for each individual case... My oncologist felt radiation would be overtreatment in my case, but I felt unsure. So she brought my case to the hospital oncology board with the same result. Then I had a second opinion from a highly regarded oncologist from another hospital, who also didn't recommend radiation.
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JaBo-what is your experience with herceptin and tamoxifen pills? Any se?
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RE: Neulasta bone pain, I switched from Claritin to a prescription for hydroxyzine (I'd read a scientic study where it helped). It REALLY loops me out and makes me sleepy, so I take it in the evening, but BOOM- NO bone pain from the neulasta this round! I mean NONE. And for reference, last time I took Claritin and tylenol for a week and spent a few nights rocking back and forth on all fours moaning like a woman in labor, the pain was so bad. I'll take the sedation instead, even though it seems to give me a sleepy "hangover" the next day.
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Heartshapedbox - I'm going to ask about this on Thursday for my next infusion. It was excruciating last time for me. Same with me; I took the Claritin faithfully and the Tylenol and it didn't touch the pain.
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Hi- I've been away from the page for awhile but have been thinking about all of you. Just wanted to mention that I am enjoying a Livestrong class at the YMCA for cancer survivors. We have a group of about 12 lovely ladies with 2 instructors and the class is free and open to non Y members. You may want to look into it after treatment.
Special K - I think you had a special diet for inflammation. Could you share that with me? Did you have any medical treatment for that? I have had some inflammation for awhile now and am not sure what to do. Thanks for always being so helpful
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Just found out today my cancer is triple positive. What exactly does this mean? Initially was told it was triple negative so I know it’s better than that. Starting chemo on Friday.
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FTM-sorry you are going through this but glad you found this group. Triple positive means your cancer has receptors to estrogen, progesterone and Her2 and there are targeted treatments that can help fight your cancer
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I also did Livestrong, great class and it was a good way to ease back into a fitness routine while paying attention to any restrictions due to surgery or lymphedema.
triple - I did the Virgin Diet, an anti-inflammatory diet, and it was the only way I could lose weight while on anti-hormonals. I tried sensible calorie counting and exercise, South Beach, lost nothing. I ate 1500 cals a day and walked 5 fast miles, lost zero. Tried this and did lose, slowly - 22 lbs in six months - but I had three surgeries over that time period and didn’t exercise at all. Here are links. I wouldn’t really buy the books - just follow the basic instructions. The theory is that these seven foods can cause inflammation and prevent weight loss. Corn, soy, sugar, eggs, dairy, peanuts, gluten. These are things that are either grown with a plethora of pesticides applied, or have aspects that many are allergic or sensitive to. The premise is to eliminate these foods, then add them back individually for a period of time, and check if they cause trouble. I only added eggs back, and then only now and then. People asked what I ate, and the answer is mostly food in whole form, lean, clean, organic (I followed the dirty dozen/clean fifteen from EWC) or grass/pasture fed, low glycemic index. I had to read labels to find the hidden ingredients and found using almost no processed food to be the easiest approach. I can give you a list of processed things that are the least offensive, if you’re interested
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FTM-sorry you are going through this but glad you found this group. Triple positive means your cancer has receptors to estrogen, progesterone and Her2 and there are targeted treatments that can help fight your cancer. Good luck to you
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Thanks Special K! I’ve had some ongoing inflammation and noticed more soreness after helping my daughter move. I had been eating pretty clean but we travelled a lot this summer and added more sweets and gluten to diet. Will check out those books and be more diligent. Did you ever take any anti-inflammatory meds
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triple - my oncologist prescribed metformin but I have not yet taken it - my routine blood work from the beginning of the year was problematic - high calcium, so we retested. Since my Vit D is low parathyroid disease is a possibility. Calcium dropped back to the normal range, but kidney function was high across all markers. Can't take metformin unless kidney function is ok. Retested, kidney function is now ok, but alkaline phosphatase was high. Like, the level tripled. Had invasive dental work done prior so we thought that was the culprit, retested - twice - and it is down but still above the high end of the range. Unfortunately high ALP is a sign of liver and/or bone issues. I do have very low Vit D and also had to discontinue Prolia, both of which can cause bone problems. We are keeping fingers crossed that this is not a recurrence issue and something else that can be dealt with. All that to say, haven't yet taken the metformin. I have also taken 81mg aspirin, CoQ10, Vit C, and probiotics.
Edited to add - I have lately been reading about the Jane Mclelland protocol which advocates off label drug use to disrupt cancer, and includes aspirin and metformin. Here is a link to some info:
https://www.nzherald.co.nz/lifestyle/news/article.cfm?c_id=6&objectid=12150643
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Thank you Special K. I hope your numbers normalize and that everything is okay. Will send positive thoughts your way
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Thanks, appreciate it. This is not my first go ‘round with possible recurrence, and it is a little stressful. The shifting lab results have been a frustration, and the reasons somewhat mysterious. This most recent look at the ALP was in lieu of a bone scan, so I’m thinking that is the next stop, along with a more in-depth look at the liver.
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TriplePHtown - Are the YMCA live strong classes doable during radiation? or better wait treatment is done?
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Sending positive thoughts your way, Special K!
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triple - how is your skin? Can you wear a sports bra? My classes included works my out in an obstacle course and doing things like planks and heavy ropes.
tess - thanks for the good wishes, will keep any news updated.
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Hope nothing serious is going on, Special K! ((Hugs))
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ET - thanks, me too! Appreciate the hug!
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SpecialK fingers crossed and thinking of you 🌸
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hi guys, I’ve see people talk about metformin several times but I thought it was a diabetes drug. What is it used for relating to our treatments?
FTM, sorry you had to join group but it is a good place to be. Lots of experienced people on this site and a lot of support for you. Hugs...
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