Topic: TRIPLE POSITIVE GROUP

Nov 2, 2017 10:17PM deni1661 wrote:

Nov 2, 2017 10:47PM SpecialK wrote:

All - thanks for the welcome back! We had a great trip - I planned it but didn't tell my husband any details - just put the address in the GPS and he drove. Basically a tour of southern cities, the UNC and U of Miami (he is an alumni) football game, then a last stop at Amelia Island. Relaxing and fun and full of surprises for him!

hap - my insurance contract for Rx was CVS for a long time, just recently switched back to Walgreen's. At CVS I was able to request the manufacturer and they procured it from their warehouse for me. As long as it was a generic they routinely stocked they could provide it, and CVS will usually carry more than one generic of any of the AI drugs.

Nov 2, 2017 11:14PM Meowmmy65 wrote:

Hap.... I told them I have tiny veins and the IV had to be ultrasound guided. Nurse and nurse anesthetist both insisted on trying, despite my requests. Three attempts. The blown veins. Finally called the PICC team. She got it in one attempt and didn't hurt me.

Lesson learned. I will absolutely refuse to let anyone "try" again. Ultrasound, PICC team, no exceptions. My poor hand is a mesS.

I've never been so grateful to be unconscious.

Nov 3, 2017 12:16AM SpecialK wrote:

hap - no I am not quite ready for Medicare, I just turned 61. I have insurance through my husband's prior military service. They do contracts with both retail pharmacys (previously CVS, currently Walgreen's), an Express Scripts mail order service.

Nov 3, 2017 05:01AM - edited Nov 3, 2017 05:16AM by Cherry-sw

I agree with coachvicky that TonLee who started this thread is avery clever lady and she had a very precise way of expressing herself. I also red her answer on this thread where she just listed all her injuries and SE she sustained after the treatments. I am torn between two choices at the moment and wish someone would make it for me. Almost all the time we have to choose between two or more bad things, really bad for us with all these SE and future risks. Only because we were so unfortunate to get this disease. Neratinib is awful but 2% difference is still something, I will try to talk to my oncologist later on in order to see whether I can get it.

I was tolerating Taxol well until probably two infusions back, then I started to get tired on days 3-4. This week it finely got me. I have been in bed since Tuesday sleeping though the days or just laying down, yesterday I decided to go walk to a counselor meeting and whole way I felt like I were 90 years old or a junkie, never did drugs so I wouldn't know but I believe I had trouble to walk straight, my legs were not with me on this. And today came nausea, I have only one infusion left but how am I suppose to start an EC in two and half weeks I have no idea. I also have pain in my liver and back, it feels like I am so done.

SpecialK, your trip sounds wonderful and, coachvicky, good luck on yours. My husband asked me whether we could go somewhere for a week between the treatments and I just told him that I fear of being far away from the hospital right now, like this is the only thing that matters to be near knowing they will take care of me. What a life.

Cherry

Nov 3, 2017 08:26AM Cherry-sw wrote:

Suburbs, no clot, good news indeed, I hope the antibiotics work for you and it gets better soon

Nov 3, 2017 11:02AM - edited Nov 3, 2017 11:14AM by Cherry-sw

HapB, I do not, I really, especially in this very moment being complete paranoid, I do not want any of these treatments, I thought Taxol was being nice to me and so thought my doctors. Now I wonder if I should call them and ask to do my blood work before the last infusion, I cannot go upstairs without holding the railing in my home, and we are talking about eight stairs. This week I just crushed. I am eating fried chicken liver, red meat and something very peculiar, a Swedish thing, called blood pudding, it is like a meal but tastes sweet and is served as so many things with lingonberry jam. It is like craving I suspect my hemoglobine is very low right now. Why I am contemplating additional treatment? Because even this bc professor who called me this week agrees with me that I am being borderline for more treatment. He said that for the size of this tumor they use weekly Taxol, a new regimen, based on Dana Farber study that has proven good results so far. But this study is new and they have not been using this regimen for a longer period of time. Due to the presence of LVI we can reconsider adding anthracycline but it is up to me. If he would called me and said: you shouldn't worry, we are over-treating you already, weekly Taxol is not less effective than any other regimen, then I would have called it quits. But he did not. I asked him about different regimens and he said that we cannot compare Taxol, TC and AC just like that because there are no study, a real randomized that can compare efficacy. But there is a study, he mentioned the name, that compared AC to TC (Taxotere+Carboplatin), AC shown to be more effective. There is no study that compares Taxol to AC, and only weekly Taxol is not given for larger tumors that has spread to the nodes because it it simply not enough, or at least they do not know at the moment because there is no study on that. Another oncologist told me that it may be the other way around, that they over-treat smaller tumors with Taxol, they just do not know. And it is not enough for me because I need to act now.I just thought that I go with one infusion EC and see how I will tolerate it, if it will be really bad I will stop.

About how I looked before, I cannot even start on this, I feel like it has been in another life. The stairs, I never walked them, I used to fly them in a couple of steps. I was contemplating whether or not I should put botox in the wrinkle between my eyebrows and decided against it, thinking, no, I want to be natural and age with grace. So much for that. I am completely unrecognizable and the worst part today was my youngest's look at her face when she saw me crying in the kitchen when I told my mom how I felt. She looked worried and upset and did not know what to do and I hate the fact that she is going through this when she is just 11.

Nov 3, 2017 01:22PM ElaineTherese wrote:

Hap and Cherry,

I talk to my daughter about cancer. It's just a disease. While I was undergoing treatment, it was no fun for her. But, she's OK now. Kids don't need to be burdened by adult problems, but they do need to develop resilience. We can't shield our kids from all of life's challenges, but we can help them get through the challenges.

Nov 3, 2017 01:36PM KimCee wrote:

wow, a shot? I get a drip. I am glad you responded. I can't find anywhere where patients are receiving Taxol weekly and Herceptin every three. Thank you Cherr

Nov 3, 2017 02:01PM KimCee wrote:

Thank you SpecialK, I want to be sharp when I go back to work in 3 weeks. That may be part of the reason my MO did it this way. To minimize effects. I feel better now

Nov 3, 2017 02:14PM - edited Nov 3, 2017 04:00PM by Lita19901

Nov 3, 2017 02:50PM KimCee wrote:

I will definitely be on top of that SpecialK, I do not want the bone/joint pain. Last go round 18 years ago I had 10 neurogen shots after each AT. The bone pain/burn for two days was awful. Thank goodness back then I didn't work, times change. So glad you were aware and knew to slow the infusion

Nov 4, 2017 09:29PM rljes wrote:

Hi HapB - oh please don't 'hold your tongue' when your Doctor says its not a SE!  Say it Loud and Proud - Make them hear you!  (I watch to much Grey's Anatomy)  I told my Rhuematologist that taking Methatrexate made my skin crawl and legs cramp - she said nobody has ever complained of SE with this drug - Well, now there is me.  Since my MO thinks he's God - I plan to tell him personally each and every SE I have with gory details. 
   I have a weird growth on my elbow - somewhat like a dbl elbow - Like a bone the size of my fingernail floating around - doesn't hurt - but strange.  Not sure who to go to about this.  As usual my BS said "not this department" (I was told to report anything different in my left arm - since nodes were removed) apparently they didn't mean it. 
  Special K - good to know about the amount of time for Herceptin. 

Nov 5, 2017 03:06AM - edited Nov 5, 2017 03:27AM by SajeScents

I am crazy confused right now. I was reading in another cancer forum (Canadian) that cancer likes calcium to grow, and consequently we should avoid ingesting too much calcium. However, I have osteopenia already, am on AI daily, had one injection of Prolia (rx'd twice per year) and was advised by my MO to take Vit D3 and increase my intake of calcium and calcium-rich foods. It looks like a no-win situation if it is true that calcium grows cancer, or is that just a myth? I am taking Vitamin K2 supposedly to help distribute the calcium to bone and not to soft tissue. I also like Gouda and Brie cheese for the same reason.

What's the real truth on calcium ingestion and cancer growth??? Thanks in advance.

Nov 5, 2017 01:49PM emily_mh wrote:

sorry to be off topic here- It seems like most people who are triple positive have gotten a mastectomy instead of a lumpectomy- I could be wrong about this, it just seems that way when I read people's stats. I realize not everyone may have a choice. My MO thinks I should have a lumpectomy but since I'm triple pos, grade 3 have dense breasts, tumor 4cm, I wonder why she doesn't think I should have a mastectomy? Especially if it's true that triple pos cancer comes back more often than other types. I guess I'm just wondering if triple positive should mean you should get a mastectomy because of its aggressiveness