TRIPLE POSITIVE GROUP
Comments
-
Hi everyone,
I've been lurking for a little while and have been meaning to post. I was wondering if there are any fellow Li-Fraumeni folks in the triple positive group.
I was clear for the BRCA genes. The genetic counselor, since I was 34 at the time, suggested that I should be tested for the p53 mutation. But, that it was highly unlikely I would have the mutation since it's so rare. Well, a month after I started treatment the test came back, you guessed it, positive for the mutation. I've seen a different genetic counselor and she mentioned how women who have the p53 mutation are often triple positive.
I'm curious if there are any other p53 mutation ladies out there. And, what your experiences have been, specifically if you've done radiation or not. My team ruled against it due to the risk of a secondary cancer.
0 -
LeeA Yes I too have read it's not unusual for DCIS to be HER2+ but doesn't always mean the invasive will be. Also my understanding of HER2 is those receptors are on all cells. It's what tells them to grow. If you are HER2+ it means you have too many of those receptors (to many "on switches") and the tumor grows even more. Something else in the tumor tells it to stop growing. I think that issues is the real problem with cancer. The "off-switch" is broken.
Elabee I did not test for that gene, or if I did I must have been negative. I also get a pass on radiation even though I was in a gray area and my tumor was so large. I think the risk to my heart/lungs was too great for the reward.
0 -
I have also read that much DCIS is Her2+ but fewer who have DCIS and invasive are Her2+, which is interesting.
My understanding of the statement "not qualified" has to do with opening up the trial to those who expressed Her2 at lower levels, and who did not qualify for Herceptin because they were not Her2+++, but expressed at 1+ or 2+. They could not express Her2 at zero and get into this trial. They found the AE37 arm of the trial (I am in the GP2 arm) was found to have potential benefit for these patients, as this particular vaccine has broad application. This trial is sorted into vaccine arms by histological type, and independent of breast cancer people are either A2+ or A2-, at about a 50/50 split. This is tissue typing like is done for organ transplants, and only A2- people can receive the AE37 vaccine. You could enroll in this trial even if you did not finish your Herceptin but it needs to be done within six months of your last treatment - or it did for Phase II.
elabee - welcome, your avatar pic is hilarious! Can't comment on the mutation question. I did have BRCA testing done because I am adopted. My BS wanted it for info because I was unable to supply family history. It was done in the absence of any genetic counseling - and only to inform surgical options. Here are the hits on this site when you type p53 into the search box:
0 -
WSJ article on health care system " push for patient engagement". What say you gurlz?
0 -
elabee - I agree, super cute avatar! under high risk for BC section on this forum I believe there is a section for those with the same mutation
pbrain AND fluff someone plse explain the statement that tamox is really good for peri-meno - and pbrain any input on the AI results that came out (that ova suppression and an AI is better for pre-meno women - 4%)
0 -
I'll see if I can refund the link
0 -
Here is one. This isn't the one I originally saw though.
0 -
Fluff - is it this one? ACSO 10 years of hormone therapy recommended
ASCO is what it should read. My letter order is compromised since chemo....
0 -
Ashla a follow up to that article. I like the way it breaks it down into 3 parts:
Scale of medical decisions shifts to offer varied balances of power
0 -
Lago
Great article! I just don't see the shift or push as they call it. None of my team or their institutions are encouraging me to be more engaged. Seems true if most of us.
I still find that paternalistic attitude and a kind of defensiveness when these doctors especially get questioned by engaged patients. We have to come here to the forum to get answers to common questions because the experts pooh pooh our concerns
I follow lots of med news and electronic health record news but when I pose questions to mds or health care data experts or enter the discussion...I'm often invisible.
I commented to author if my article that I have witnessed no such push. Let's see if she replies.
0 -
A lot of it has to do with time too. But if I'm not given all the info I will never be able to make good decisions with my doctors. I need more info and many times I didn't get it because I just didn't know what to ask. Who knew at the beginning!
BTW my onc did look at the article but couldn't open it. She wanted me to copy/paste. At least she isn't dismissing me. I didn't even expect a responce.
0 -
hi everybody!
Just returned from a few days in Niagara Falls and trying to catch up on the thread
We had a nice time away but unfortunately I couldn't forget about my cancer. Whenever we went out and I saw older couples id cry thinking that we will never get to spend our retirement years together
Then I remember the advances that have been made with herceptin and think why can't I live into my 70s or 80s? I know many 20+ year survivors with NED
Despite the tears we had a nice time away. Saw a play in Niagara on the lake at the shaw festival called we are married - very funny about three couples celebrating 25 years of marriage who are told that their marriages might not be real. We saw stomp last night - awesome. We rented and rode bicycles 15 miles along the Niagara river. We threw money away in the casino. We ate too much. It was great!!
Lol
Tomorrow reality hits. Bloodwork and meet with my MO. Then wed my 3 rd and final round of FEC. Halfway done chemo!!!! I must admit that I am SO CONFUSED!
:-(
After FEC I start taxotere with herceptin for 3 rounds then continue with herceptin for a year. I am told that I will start tamoxifen in the fall for 5-10 years
I am so terrified about starting taxotere/herceptin I know some women have breezed through it while others have suffered. I am hopeful that since my SEs haven't been too bad so far that it might continue this way
After reading the many posts must admit that I am SO CONFUSED! Is this the right thing to do? I am perimenopausal and I go have faith in my MO. Then I read ur posts and try to understand it all
:-(
Little bumps have been forming on my head and I have a bump on my earlobe. What the heck !!!!
Hubby goes back to work tomorrow and I try to stay positive. The hardest thing for me is to be alone. I try to stay out of the dark places and I sometimes find it easy - at other times it is so hard!
I thank you all for being there for me through the tough times and laughing with me through the good
You are all awesome!!!!
0 -
Footballnut there is a woman in my building that is a 30 year survivor. I did the 6 rounds of taxotere with carboplatin. That was 3.5 years ago. I never had an emergency. I worked out through most of it and only quit because it was cold. Actually bad decision to quite. It really does help if you can exercise through it. Did I have down days, yeah but I made it through.
Not sure why you are so concerned about Taxotere if you've finished FEC. Isn't FEC worse?
If you have skype PM me and we can chat tomorrow. You don't have to turn video on.
0 -
ashla - I don't find that I am marginalized by any of my docs - BS, PS or MO. I don't see much of my BS anymore, but did go with a friend for her consult with him, she ended up using his brother instead, but it was a chance to chat and catch up. We had a far reaching conversation about my dx, and hers, which is the opposite as she is TN. It was interesting and we discussed several studies, including one the brothers are participating in and are principal investigators for, as well as a TN trial at Moffitt, with the principal investigator onsite, that they are familiar with. My friend consulted with that doc as well and we discussed at length how the chemo protocol differs due to the structure of the trial. I have seen my PS extensively - out of all the surgery listed in my sig line, he has been there for all but the ALND. We discuss at length - he has never opined that we will do any particular thing - it is always a joint decision. At my last MO appt., 6 months ago, I saw him at the end of the day. He loosened his tie and we chatted for quite a while. I always come in with a list, sometimes a hard copy of a study or trial, to discuss. He said last time - "I enjoy seeing you because you are so smart - you really understand the details", which I took as a compliment. I felt that he finds me refreshing because I ask questions instead of just blindly following instructions, and I will challenge and ask questions. I see him at the end of the month and we will discuss vitamin D, metformin and my fasting glucose and A1C results, switching from Femara to Tamoxifen in a couple of years, the end of my vaccine trial, my list of supplements (which he asked to have a copy of last time), my weight loss and the diet I have been on, and a few other items. Last appt. we chatted about the lack of integrated care for those of us through with active treatment in terms of supplements and diet. Since that appt. the practice has added acupuncture, massage, yoga and nutrition classes. He referred me to a holistic doc downtown for additional guidance.
0 -
FBN - I had the exact same protocol as you - FEC was horrid - I wouldn't say I breezed through tax and H but it was way way easier. I guess for me since the digestive stuff (nausea etc) was so bad and I did not have that with tax at all - the worst was the bone pain but this can be controlled with pain meds
0 -
I feel the same way as Special K. the reason I chose the Onc I did, after the interviews, is that I'mpart of the team. He explains everything and makes sure I understand it, so I can make the decision. Does he tell me what he thinks is best? Yes. Do I follow everything he says? No. I gave him a bunch of print outs tonight at yoga on the trial I am in and he said he was going to read them, see what other updates he could find and then wanted to talk about it with me. With my BS, it was totally up to me whether to have a Lumpectomy or BMX. She laid everything out, option wise and then said to also meet with PS first, to get his thoughts on the cosmetic aspects.
My PS and I just hit it off. Thank heavens since I had an infection and a gazillion surgeries in one year, I have a fat file there. My appointments with him are always at the end of the day, his request, so He doesn't have to keep a schedule. We have a great time.
With all that, I will say, my close friend, the Nurse Practitioner, is married to a doctor (2nd marriage) in her practice. He is a lot older than us (72, I think). Smart guy, but he doesn't particularly like to be questioned. My husband sees him and several years ago, he had a gastric bleed and ended in the emergency room. That is when the doc took over his care, and we didn't know him well. They had a hard time keeping his count up, and his red cells weren't maturing. Weird stuff. I did all this research, had all kinds of questions about potential blood disease. When I went with Joe to the followup appointment, I whipped out my little binder and questions and he practically dismissed me.
I was not happy and made it perfectly clear. We are good friends now, and have had many discussions about that day and other medical things. He told me he had changed somewhat in his approach. Said they deal so much with the elderly (internal medicine doc, we are young there, lol), who don't always have the capacity to do a lot of questioning, so it becomes a habit. I told him that is BS, and it is his ego, lol. Seriously though, he was a huge help through my treatments.
I think it depends on the person, the age, and the age of the doctor and the personality. Some people want the doctor to be the decision maker and trust them to make the best decision, and that is great. It just isn't me.
0 -
Robin-that might have been it, although I thought it was more detailed than that.
0 -
My BS also steered me to the PS and MO - I went with his recommendation for the PS due to the kind of surgery I was having - skin and nip sparing BMX with incisions in the IMF, I wanted who he felt comfortable with. The MO is upstairs from the BS and he sends a lot of his patients to him - partly for ease of management, and also because he is careful about who he sends where. His brother sent my friend to the same practice, different MO - one who specializes in younger patients since my friend is only 35. Looking back I also wonder if knowing my proclivity to ask a lot of questions and be proactive, and need very thorough explanations, he referred me to other docs who would be receptive to that.
0 -
My MO and I had a bit of a "discussion" during my 2nd appointment. I stated I was in charge of my health. I needed him for advice, information, and of course to write orders. But, I was the decision maker. Since, we have moved beyond the typical MD/patient visits. He comes in without my file and almost expects me to have new research ready to discuss. We have had some of the really hard talks with him being very honest about my prognosis. I have an advantage and a disadvantage with my nursing background. Disadvantage in that sometimes nurses ignore all advice
Advantages in that I know most of the nurses in the oncology department with several being former students and having clinical master's degrees I believe in science and was always prepared with research, questions, and options. When I said no more invasive nuclear medicine scans unless I was clearly symptomatic-he hesitated-but only for a bit-then said Ok. When I asked about metformin-and had evidence-he ordered immediately. I agree that for some having the MO or any MD make the decisions works. It does not for me. I have always encouraged my patients to be the leader of their health care team. But I did the same when my children were little and had illnesses. The pediatrician was certainly in a guiding role; but as the mom my input was equally important for the care of my children. My husband was an intervential cardialogist and I was a pediatric nurse. When my oldest was born our pediatrician came in and said-you are not a doctor and you are not a nurse. You are parents. I am the doctor. Do not play doctor with this child. Call me. He repeated this with the next 2. Sadly, he retired before my 4th was born. But-he valued my input.
I have always told people who complain about their health care provider. If you were not happy shopping @ Target you would go to a different store. It is the same with health care. If you are not happy-look elsewhere. I love how several of you interviewed MOs and BS prior to selecting. Most women now interview OB/GYNs prior to getting pregnant and parents interview pediatric practice partners during the pregnancy. I love it. This keeps the health care people reminded of their role in caring for humans. Real humans.
End of tirade
good night ladies.
Much love
0 -
I asked my BS nurses who they recommended. I figured they know the staff, nurses and Drs. I was right. They asked if i preferred a dr who knew his stuff or was people friendly or one who cared or one who was there for his patients. She told me which of the docs fit which scenario. I then chose one who was there for his patients. I haven't regretted it ever. And don't forget you don't get to be an oncologist without being smart. It's those other little characistics that count. BaTW, she liked my pick. LOL
0 -
More on the " engaged patient" .
Doctors encouraging patients to look inside their medical records?
0 -
I think getting patients more involved in their own care is a wonderful idea worthy of full out support but so far I see no evidence. I am well pleased with all my doctors and they all show respect for and devote time to my questions and complaints. They do not discourage my active engagement but I have not seen the system change toward encouraging this behavior. I now have ... As a result of my activism... A team that allows my engagement!
From what I see in the forum... It appears to be the norm.
0 -
susanHG123
I so enjoy reading your posts! Would love to reread ... I bet the newbies would get a kick out of... The ones about the stray interventional cardio!
What a friggin moron your ex is! Any sightings?
0 -
hmmm...this is good info. I wasn't really given options when I had my mx. He kinda just talked out loud to me about the options. He had plenty of discussions with my MO about what they thought was best for me. I'm moving so I'll see a new MO on Thursday. It will be interesting to hear what his opinion is.
All the info about hormone treatment has been good. My MO said Tamox if still pre and another Al if post. Now I'll know more to make my own decisions.
I'm getting my first AC treatment right now. Little nervous...not sure what side effects I'll experience.
0 -
Hang in there Mommato3. Just be sure to take the puke meds as directed. Do not wait till it gets bad. Any slight nausea, take it. But during infusion you should be fine.
0 -
momma - you should get anti-nausea in your pre-meds, and have some take home prescriptions, but I have seen many on AC go the next day - particularly if getting Neulasta anyway, get some more fluids and steroids if they have some nausea.
0 -
Hi Momma,
I did AC. I was so scared before I began, but it ended up okay- doable. Staying on top of nausea meds is the right thing to do. I found I felt good day 2 (day 1 being treatment day) because of steroids they gave me at treatment but that I began to crash on day 3 (if treatment day is day 1) and really so on day 4. Drinking a lot is important, and I do recommend ginger capsules (like from health food store) as an anti nausea helper- I really reduced my nausea drugs because of that. I also ate like I was pregnant- continued small meals. I found I liked salty foods during chemo.
Also, get a little pitcher of water with tsp of baking soda and dash of salt and put in bathroom to rinse your mouth out a few times a day to prevent mouth sores. And try to get a little exercise everyday. And don't have the family leave you home alone for a long time even if you feel they should all go on with their lives. Sometimes it's nice if someone will get you a glass of water. And if you go through a rough patch remember you will get through it. The second week you'll feel almost normal again.
I also took Claritin the day before, and the day of, my neulasta shot-- I never had any pain from it.
I also I went to ACUPUNCTURE through our cancer center- that was amazing and I think helped a lot to maintain my equilibrium.
Please feel free to PM me with any questions. You will get through this. I got through soccer games and Christmas and New Years while on AC- hosted our big Christmas Eve party, managed Christmas, and attended my daughter's xmas pageant on day #4 when I wasn't feeling great- but made it through and those who didn't know me had no idea was ill. I also rested and took it very easy on other days.
There's no need to be a hero, try to do what you need to do for you.
0 -
Thanks for all the tips. I'm home now. My heads feels a little weird but otherwise I'm good. I took a Claritin 24 this morning and will for the next couple days. They gave me a prescription for a steroid that has to be taken and one that I'll use when needed. I drank plenty of water yesterday and am still trying to drink the recommended amount today. That is the hardest. Good grief, I'm tired of needing to use the bathroom.
0 -
Hey all just finished round three - half way through chemo. My liver enzymes still elevated in fact increased to their highest - but still not extremely high...but they are sending me for a CT scan of my liver and and they will also check out my mid back area at that time. They are also running Hepatitis tests. They say they have seen this with my chemo regime but want to make sure something else isn't going on - I am happy that they are running the tests but you know that this is now stressful. Not sure when the test will be yet - scheduling will be calling me to set it up.
0 -
The mutation to p53 is in the cancer cells and not in our regular cells. p53 codes a protein that is a tumor suppressor, so when it gets knocked out, we develop cancer. It is a common mutation in a lot of cancers, but it isn't (per say) an inherited one. It is more environmental.
And Elabee, I just LOVE your profile picture!!!
0
