TRIPLE POSITIVE GROUP

PoseyGirl

blown away... that was my post and I’m so sorry that it’s coming baok to haunt you ... I didn’t share this one oncologist’s comments to create fear. Please know that she would not be referring to a patient with 1a. she was speaking in the context of a patient like myself, who is 3a...nodes affected. I did not like her flippant remark at that time, but in her miscalculated remark, I think she was trying to make me feel better. I’d had one chemo session with little response. She was trying to suggest that the big gun for me would be Herceptin. So please remember the context of her remark...you are very early stage and Hapb is right on about the stats

Blownaway

Poseygirl - I'm not much of a worrier about things that can't be helped. I know most HER2's get a lot of comfort in knowing Herceptin is available to them. I'm feeling really stupid for stopping Tamoxifen due to the bone pain. You've given me incentive to start taking it again or at least try another hormone therapy

Blownaway

HapB - I was just reading over your prior post re Plan F. I'm eligible in July. So my understanding is to go with traditional Medicare A&B and sign on with an insurance company for part D and plan F. I had been researching advantage plans in order to get some dental insurance. What do you do about dental? Do you mind if I ask what your monthly premiums add up to?

Blownaway

Thanks HapB! My symptoms with heart failure from herceptin were lack of stamina, extreme fatigue, shortness of breath, swollen lower legs.

Kattis894

I thought radiation was a given with triple positive bc but I guess the tumor being so small it might not be needed. It is very confusing since we all seem to get different treatments somewhat. What is lupron? I never received this?

Well I did receive "the works" I guess and the aftermath is pretty longterm in a lot of different ways. The chock of it all lingers and my body feels so stiff and I am for sure still suffering fatigue. It is hard to know if it is due to treatment or if it is simply due to psychology, depression etc. It is such an ordeal for the body to go threw so I find it very hard to keep motivation up for exercise and other life style changes. I try to walk every day and have started a very easy training program twice a week with a pt. What I am able to do is embarrassing but I guess I got to start somewhere. So impressed by everyone keeping a regular fitness program. I am one that find myself having a really hard time getting started and keeping up. I need to loose weight and start my healthy life somehow.

tld2017

Good evenings, ladies. It has been a long day of infusions but I'm at home with an electric blanket. I still have the cold cap on my head for another hour but my head is numb now so it's all good. I wanted to let you know, unbelievably, that my insurance company decided to approve Perjeta. I started today! So it was an long infusion of Perjeta, short one of Herceptin (since I had it last week), and Taxol. I'll be interested to see what the Perjeta does to me but I'm expecting some major stomach issues, if all what I have read is correct! I've been reading old posts today, and all of you seem knowledgeable. I am so impressed! I'm just so new to all of this and I feel like I have no real idea of what I'm doing. I just follow along with what the oncologist and his team tell me to do.

SPECIALK, I was disappointed that the oncologist told me today that he did not want me to use L-glutamine or Biotin. He said, in his research, he can not definitely say that both are okay to use during chemo treatment. So that's a big disappointment. I'm considering going against his advice, which is huge for me because I am rule-follower to the minute detail.

Jstarling

I begin chemo tomorrow. Spent my day using nervous energy taking a walk, knitting and making blueberry muffins and a chicken casserole for dinner tomorrow evening. My bag is packed, I’m ready to go.

SpecialK

tld - that is unfortunate about being shut down by your MO on the l-glutamine, here are some citations if you think it might help. Also, a link to foods high in l-glutamine. I didn't cold cap, but did take biotin after chemo was done.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3385273/

https://depts.washington.edu/integonc/clinicians/spc/l-glutamine.shtml#references

https://www.naturalnews.com/031811_glutamine_amino_acids.html

Homemadesalsa

Hi all and especially tld-

I will be in your shoes tomorrow. First TPH (taxol, perjeta, herceptin), and I am most apprehensive. I did read a chunk of those studies (thanks Special K, especially for the NIH link) and went out and bought L-glutamine, L-carnitine, and methylcobalamin, all of which (in addition to vitamin E, which is in my multi) are highly recommended for use with taxol. At this point I think my MO is a bit rural and stubborn, so I am going to take them anyway. Gasp... I terrified myself by reading too much of the Taxol thread so retreated back here to your fine company.

take care all. Wishing you well, tld, and think of me tomorrow.

ElaineTherese

Homemadesalsa,

I'll be thinking of you tomorrow! I actually thought that Taxol was easier than Adriamycin + Cytoxan, but some BC patients have preferred AC to Taxol. So, everyone is different. Take it easy, and I hope your side effects are minimal.

Suburbs

Hi everybody. I did TCHP and was forbidden to take any supplements other than a standard multivitamin. But I am all for supplements. It's definitely a conundrum. I wish I could help.

On the perjeta, I had a most horrible skin reaction to it. Took steroids to battle it which had there own set of problems and weakened my immune system even more. I'm still dealing with the fallout. Anyway, the chemo is not fun but you deal with it the best you can. You find inner strength you thought you never had. And then it's finally over. I joined a chemo group but it was not active because everyone joined a separate Facebook group. That might be an option. And of course being triple positive has its own set of treatments. I found this thread to be the best place for support and suggestions. Hang in there.

tld2017

Homemadesalsa and JStarling, you've got this, my friends! The other ladies on this thread are far more knowledgeable than I about all things chemo-related but I can tell you that the THP today was not bad at all! I just had TH last week and I did feel quite a few side effects but nothing I could not handle. My first treatment was on Tuesday and Friday was my worst day, but even that day was not horrible. I promise that both of you will be in my prayers tomorrow!

Thank you, Suburbs, HapB, and SpecialK, for your thoughts on the supplements! It is certainly something that I am going to have to think about when I'm not so groggy. I truly wish that in 2018, the doctors could be certain of what is helpful and what is not with regard to supplements and cancer!

SajeScents

Thank you, Posey, for your post. I appreciate where HapB is coming from, but as a legal assistant and someone who has seen tons of medical reports as part of my job, I am concerned that newbies may place too much confidence in unproven alternative therapies. I know of patients in my own Canadian city who sought alternative therapies either here and/or have traveled to the U.S. and elsewhere for alternative treatments costing many thousands of dollars, only to eventually return to hospital in Toronto after a few years with metastases. Hope springs eternal. We are involved in defending one Toronto doctor now who is quite popular for his alternative treatments, yet his stats are skewed and studies are not rigorous and valid. Sad for the patients who could have probably better spent their money, to say nothing of the disappointment! Often they seek legal recourse to damages; however, they have failed to mitigate their loss by signing away various consent forms. Buyer beware, please!

coachvicky

To all starting their chemo ...

One day you will look back and remember "it wasn't that bad." Really.

I finished 14 August 2017. I remember finishing, feeling accomplished, getting it done. I do know that I had side effects but they are not prevalent in my memory like they once were.

Best wishes, loving prayers to all.

Vicky

Ingerp

All good thoughts toward people starting their chemo journeys. Coachvicky as always you are a ray of sunshine. I’m sure like many things in life as time goes on you forget the bad stuff. In my head my rads two years agowere NBD—I’m sure at the time they were a little bigger deal but in hindsight just a blip on the radar of my life.

deni1661

tld, jstarling, and homemade - sending healing thoughts as you begin your chemo. Coach said it best, you wIll look back and feel you accomplished something significant. Your body does go through a lot but over time things do get better. Hang in there!

Hapb I am so sorry you're having issues with Herceptin again! Thanks for the book and film recommendations. I'm always interested in learning and exploring new ideas

VVV

I saw this earlier and thought I'd post it since Fuhrman's name has been mentioned. . https://sciencebasedmedicine.org/dr-joel-fuhrman-s...

This is another article I read, the woman who it's about also has a blog. It's about a naturopath who left her profession and now works to bring the industry down, basically.

https://qz.com/1088056/a-naturopaths-fight-against...

VVV

I don't really know anything about Dr. Furhman. I saw his name here and then I saw the article I posted and thought I'd share. But I can tell you from looking at his website that he's a business and he's trying to make money.

VVV

Look, I never said anything about diet other than it doesn't cure cancer and none of those studies will say they think it does. And all I was pointing out is a doctor you linked sells an iodine test for $131 USD that's scientifically proven not to work. If you want to trust him, that's your business.

ElaineTherese

HapB,

I don't think that anyone here is saying that diet and lifestyle changes aren't helpful for maintaining good health. However, I don't blame my cancer on my lifestyle, and there's no guarantee that a healthy diet and lifestyle will prevent recurrence or mets. That doesn't mean that I'm not trying to adopt a better diet and engage in more exercise -- in addition to my breast cancer diagnosis, it's clear that my family is the "stroke family," and I don't want to become increasingly debilitated by strokes like my grandparents did (three out of four eventually died from strokes). Along with my better diet and more exercise, I also take a three-drug cocktail for my hypertension which seems to be helping out. And, I also take my AI (exestamane). It is what it is.

VVV

I'd like you to show me where it's discredited from sites that don't practice alternative medicine. It's run and written by doctors and every claim they make is cited so you don't have to take their word for it.

astyanax66

Hi, all--hope you are having an up day. I've traveled 6 hours in 2 days for various appointments. I have my treatment plan--Paclitaxel and Herceptin for 12 weeks, Herceptin continuing thereafter every 3 weeks for a year, radiation to follow chemo after a short break, and then an AI (not sure which one yet) either during radiation or right after (the MO and RO have to discuss it at tumor board, and also, they of course want to see how well I do in the 12 weeks before making firm plans). I will go on Tuesdays; I was told I'd probably feel pretty good Tues and Weds, rough on Thurs and Fri, and improve over the weekends. I've gotten lots of literature to read, and I was pleased that the MO wanted my opinion on the proposed treatment. (He concurred that with my case, AC would be a bit much, especially with cardiac considerations). The physical therapist said my range of motion was fantastic--no cording or lymphadema. I do have a small seroma, but the SO took a peek and said it was small and should resolve on its own, but to let her know if it changed at all.

New research on the AI was presented (and they gave me the citations to look over): Possibly 10 years instead of 5, if tolerable. But again, that's several months down the road from now. Nothing has to be decided for sure yet.

HR is still causing "issues," so the marvelous nurse navigator took them to task. (I had provided everything--they wanted more, more, more. I'm like, what, do you want me to lift my shirt?) They wanted "precise" descriptions of when I would have flareups or side effects. I'm not kidding--I got a copy of the forms, and that was the wording. NN wrote, "The patient is taking chemotheraphy, which is inherently *unpredictable*. We cannot predict precisely when or if she may have complications or flareups." I gave her a high 5 today. My only fear now is HR retaliating in some way. Sad. The only thing I did question was I'm listed for FMLA through Feb. 2019, and I hope to be able to return to work FT a few weeks after chemo is done, if all goes well. Of course we don't know ANYthing for sure, but that is the hope. I'm sure the doctor can adjust the paperwork if I am indeed ready to go back FT shortly after chemo.

Take good care of yourselves, always,

Dee

ElaineTherese

HapB,

Your study isn't about women who are taking medication to address osteoporosis. My MO said that I need Caltrate because I'm on Prolia. My doctor said that Prolia doesn't work well if you have low blood calcium. The calcium + Vitamin D supplements help me sustain normal blood calcium levels.

ElaineTherese

Yes, I am aware of the study in question. But, aren't you on Zometa? The study in question is not about women who are using medication to treat osteoporosis. It's just a study of people more generally.

whywhy

Want to give an update. Tomorrow is my last chemo. Hope to get it done and over. Not easy but I am getting this close.

Did a genetic test. Found two issues. One is BRIP1. The other is MUTYH. Did some research, BRIP1 seems to be associated with increased risk of ovarian cancer. Scheduled a meeting with OBGYN oncologist to discuss the removal of ovary. Can't find much info about MUTYH. Can't get an appointment with genetic specialist since there is a waiting list of over three hundred people.

Scheduled appointment with radiation oncologist. Soon move on to the next phase. Perjeta and Herceptin will be for a year.

About diet and healthy life style. I don't know whether they help reduce the risks of recurrence or met. But I do know it does not matter in getting breast cancer. I've been super healthy. Never spoke or drink. Eat more fruit, vegetables, fish than most people I know. Don't consume much meat. Don't drink soda and probably have dessert a handful time a year. Work out regularly. Slim build. No family history. Mom and older sister are all healthy. Did not help prevent getting breast cancer when just turned 45.

I now think it's more bad luck than anything else.

Juli24

JVP, Elaine, Whywhy and others - thanks for your posts. I do hope you don’t get discouraged when your opinions are shot down so quickly. Some responses have been seemingly condescending and dismissive. Please know that this is one response. Many of us agree with you completely. I know I will get a snarky response from Hap. So be it. Hap, if you would honestly review your posts you might see a pattern. I know you are a good woman struggling like the rest of us. Unfortunately your manner of communication turns a lot of people off thus causing some to just disregard your posts or worse to stop posting. Sorry to be so blunt and this is just my truth and opinion.

I am so very sad today. Because of my diagnosis I have been taking care of a few things in life. One of those related to my little 6 year old dog. He’s a fluff ball and a character - a Teddybear if you know the breed. Very loving and loyal. For the past few months it has been obvious he has been aware of my condition. He became extremely possessive of me to the point of aggression. He also developed behavior issues. For example...every time I coughed or moan he peed wherever he was....carpet, fabric blinds, furniture, etc. Prior to getting sicker he was perfectly housetrained since a small pup. We never yell at him but he knew he was wrong and had the saddest face. We did take him to the vet for a slew of tests all of which were negative. Vet said this isn’t unusual when Pack animals understand something is terribly wrong with their owners. To make a long sad story shorter I’ve been looking for a new family for him to love and love him. This breed has a long life expectancy (hubby has heart issues making neither of us good long term fur baby parents). Unexpectedly we found a “perfect family”. I had to say goodbye my love. Hubby took him and a carload of his toys, beds, food, blankets, bowls....you name it...he is a spoiled pup to his new family. I sat here and cried my heart out but, you know, as heartbroken as I feel I also know I did the right thing for my baby. I wish I knew how long this hurt will last or when I will feel better about loving him enough to let him go. Can’t write more tonight. Just wanted to share.

SpecialK

juli - I'm so sorry you had to give your pup away, even while knowing it was for the best, doing so had to break your heart at an already difficult time.

SajeScents

HapB, thank you for clarifying your stance on alternative therapies. I have not had time to read all of your posts and certain ones were read out of context. My apologies.

I, too, am no stranger to the value of lifestyle changes (nutrition, exercise, sunshine) having studied behavioural medicine as an undergrad. However, you will, no doubt, agree with modern physiological psychology that disease models being studied today no longer simply look at host and agent, but rather host implicated in a huge web of causation; i.e., many, many factors come into play in bringing about an imbalance in the homeostasis of the body (physical including genetics, emotional, spiritual, environmental, etc.). The problem with many studies reported in PubMed and elsewhere is that their focus is so restricted (rightly so to control for validity and reliability, say nothing of experimenter error), that it is virtually impossible to extrapolate any conclusions, unless they're large longitudinal studies!

Furthermore, I find it interesting that Steve Jobs, despite adhering to his supposedly very healthy vegan diet, succumbed rather quickly to his pancreatic cancer. Thus, we know nutrition is only one strand of the web of causation, as I'm sure you will concur.

It's good to know you're au courant with many studies, and I'm sure we'll all benefit from your sharing same with us. Thank you, once again, for your clarification. I don't think anyone wants you to stop posting here.

P.S. I am a somewhat fan of Dr. David Servan-Schreiber -- he survived an aggressive brain cancer 19 years when his prognosis was approx. 2 years. I have read his book, "Anticancer -- a New Way of Life", along with Joel Fuhrman's books, Mercola, and many others. While I appreciate much of what they write, I find that they often contradict one another leading to endless confusion!

Suburbs

Juli24, oh no. I can't imagine how tough it is saying goodbye to your little buddy at this time. I know nothing I can say will make you feel better. You have helped me considerably though. My pup has been exhibiting similar behavior. Over the summer as I was recovering from surgery, she literally had to be carried outside to do her business. We attributed her behaviors to old age. I will be more mindful after reading your comments and consult with the vet. I thank you and send hugs

shelabela

So many posts since i checked in last so I'm sure i will miss many people. I honestly don't read a few of them too depressing, i come here for support i think there should be a different thread started for all the "studies, news articles, any of that stuff" to much debate, everyone is entitled to their own opinions, sorry.

Things are going ok here, having a hard time adjusting to the slow down in life. Things were so busy for so long and now boom no appointments, what to with all my time? I overthink that's what i do! What i think about most is how precious life is. I was never one to live in the moment before but i am now.

I have also been working with the local mammography department to start a buddy program. So what it is, when a lady comes in and is diagnosed they give her my number and she can call me to talk about anything, i have had 3 people call, 1 lady is single with no family around.

Hope everyone is doing good

vicky, who did your tattoos? My PS has a tattoo artist that does them. He does a great job.

Juli, so sorry you had to get rid of your doggie. My dog has been so snuggly this last year.

Cherry, so happy you are doing ok.