TRIPLE POSITIVE GROUP

Cherry-sw

I am catching up reading all the posts.

fluffqueen01, I have been reading this thread from the beginning, somehow feel like I know you. Best of luck on your biopsy. I remember TonLee had swollen nodes on her neck few years ago and they turned out to be nothing. Positive vibes all the way to you

SpecialK

fluff - if it is any consolation I had a bi-laterally abnormal PET last year after my BCI test showed high recurrence risk and low benefit from anti-hormonals beyond 5 years. I already had surgery scheduled with my PS the week following to swap my new left expander, and downsize my old right implant. During that surgery a 3cm suture granuloma was removed from the exact spot of my previous cancer - it looked like more cancer on that PET, but it was inflammatory response. I had several other areas that also lit up but were the same or similar issues. Hoping your situation is similar. Also, BTW, since we are five years out I confirmed a couple of months ago with my coordinator for the vaccine trial, and I did indeed receive the vaccine - so, yay!

Cherry-sw

deny1661, please feel free to share any of your son's recipes or ideas for vegetarian meals. I eat meat and dairy products now while in treatment but I plan on switching to plant diet. We were eating a lot of vegetables even before, compared to a normal Swede we eat ten times more of onions for example and still I got this bc. SpecialK has great recipe for kale salad, it is on p. 1032 on So, what's for dinner thread. I tried it, tried some variations of it too, what can I say I like kale now, before I was just looking at it thinking well this is definitely looks like something for cattle, turns out it is eadible.

I will have my second EC on Monday, met my oncologist today and she said that my values were normal, wbc shots worked for me and she will prescribe stronger anti- nausea this time. I asked her whether I should skip the last EC because I am eager to resume Herceptin because DN Sara Tolaney's study latest results have been published and they are overall look good. My oncologist, who by the way, look like Dolly Parton minus hair, boobs and lips, like an ordinary personality Dolly Parton who became an oncologist, not that I dislike Dolly Parton, I do, after all she gave the world I will always love you. So my Dolly Parton looking oncologist, they are the same age too, said that nobody can know what is good exactly for me but Herceptin is not going anywhere but we will discuss it after the holidays before my third infusion. I like her a lot, somehow she makes seem everything around this bc doable and treatable without sitting there looking deep into my eyes telling me that I am going to be ok, like BS did during pathology report, because I did not belived her then, got hysterical, and she said ok I cannot reach to you wait here I want a psychiatrist to talk to you because if you are a danger to yourself we have to take you in. Just like that. So, my oncologist is not like that at all.

Otherwise I lost all my eyebrows and half of my lashes but got hair coming so I can no longer feel the scalp but it all will fall off again. And I got a huge sty in my eye again, antibiotics did not make any difference for five days but today it is getting better and hopefully it will resolve and will not turn into a cyst. EC first ten days is bad but maybe I will be ok before the NEw Year, otherwise my eldest will make Christmas dinner, at least parts of it, under my supervision. It will be just us and her boyfriend,

Cherry

Meowmmy65

Cherry - your Dolly Parton looking oncologist rant absolutely cracks me up. Thanks! I needed a good laugh today!

Cherry-sw

Anytime, Meommy65. You thought it was a rant? You have not seen me ranting)

Meowmmy65

Rant - not in a negative way!

Cherry-sw

HapB, this study for early stage Her 2 pos no nodal involvement bc that was conducted by Dana Farber, 406 participants, no control arm. BCO posted a link, someone posted it either here or in some of the other threads I am following but I think it was here, 6,5 years follow-up.

SpecialK

hap/cherry - is this the one you are referring to? This is the 7 year follow up of the APT trial, from May of 2017:

http://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.511#affiliationsContainer

Cherry-sw

Thank you SpecialK, this is it!

SpecialK

hap - there is no way to prove what causes what in trial subjects - they are of all ages and states of general health. If Herceptin causes congestive heart failure, that is usually reversible, how would they prove that the Herceptin caused fatal CHF if the person had pre-existing risk factors and may have developed CHF without Herceptin. Because breast cancer is most common in post-menopausal women over 65, it also coincides with risk for heart disease in women. Menopause significantly raises heart disease risk, and more than 75% of women ages 40-60 have at least one risk factor for developing heart disease. 8 deaths in a population of 410 subjects is not a large number, if you took any 410 people you might find a similar number of deaths over time. If you look at the study itself, not this update, you will see that several of the patients who died had other types of primary cancers, one had a stroke, one had ovarian cancer, and 4 developed metastatic breast cancer. Only two patients out of the total number of participants had LVEF that did not normalize.

Anonymous

thanks for all the kind words everyone. If you have read from the start, you will know I am NEVER on the right side of the odds.

And it’s kind of surreal as my dad was diagnosed with duodenal cancer right about this time when I was 29. My grandmother passed away in December ten days before I was born.

My own diagnosis was going on at this time.

Crazy. You would think I would hate this month.

My second oncologist retired this summer due to an inherited eye disease that was causing him to be unable to drive. My first one (whom I worshipped) passed away suddenly from a weird heart thing.

I made an appointment with a person in his office for January 3. She has my records. I’m thinking I should mention that I seem to curse my oncologists lol.

I wasn’t due to see a doc until next July but I just have a gut feeling that this biopsy isn’t going to come back with good news. So I am getting the ball rolling.

Special k, good news! I got the vaccine too, but I think your version has more benefit than the version I received.

Not looking forward to the needle thing either. I don’t think they numb you up. My doc prescribed a Valium after I freaked out a little over tha

SpecialK

hap - fluff and I enrolled in a Her2+ recurrence prevention trial that involved two vaccines - AE37 and GP2, and patients were sorted to receive one or the other based on tissue typing - nothing to do with breast cancer, but the type used for organ transplants. This had to do with vaccine binding. Fluff was about 6 weeks ahead of me, I believe and did the trial at Wake Forest and received the other vaccine. It was not shown to provide as much of a preventive advantage - the vaccine group and control group had essentially the same results. I participated up at Johns Hopkins satellite location in Washington, D.C. Here is the info regarding the vaccine I received, I am one of the 89 mentioned in the first paragraph:

Phase II Study

The findings are the result of a phase II randomized trial that paired the GP2 vaccine, designed to stimulate the CD8-positive cells, with an immune stimulant known as granulocyte-macrophage colony-stimulating factor (GM-CSF, Leukine). The trial included 190 patients with varying levels of HER2; 89 women received the GP2 vaccine with a GM-CSF adjuvant and a control group of 91 patients received GM-CSF alone. Eight patients experienced early recurrence or developed a second malignancy and did not complete the vaccine trial.

The vaccine is injected subcutaneously and the initial series consisted of monthly inoculations for 6 months, followed by four cycles of booster shots administered every 6 months thereafter. The patients were monitored for nearly 3 years.

For all 190 patients, including those who did not complete the trial, the disease-free survival rate was 88% among those who received the vaccine and 81% in the control group, a 37% reduction in recurrence. After excluding the patients who did not complete the vaccine series, the disease-free survival rates were higher: 94% vs 85% who did not receive GP2, a 57% risk reduction.

Women with HER2 +3 who were administered trastuzumab 1as part of the standard of care prior to receiving the vaccine experienced no cases of cancer recurrence. According to Dr. Mittendorf, trastuzumab may act like a primer for the vaccine. Trastuzumab stimulates CD4-positive T cells to release substances that fight cancer cells and initiates an antibody response. Thus, it may prepare the immune system, making the vaccine even more effective. Researchers at MD Anderson are now testing this combination of immunotherapies in other clinical trials.

Cherry-sw

fluffqueen, I remember you had troubles with Herceptin, I guess, and that you and I had similar stats but not that you were being on the wrong side of the odds, I am still reading the thread when I have time, am on p.235 I think, lot of valuable info there that all you people shared with each other. I think when you get bc you are pretty much consider yourself being on the wrong side of the odds. I am sorry about your oncologists, mine is great too but when I am telling people at the clinic who is my doctor everybody asking me whether she gets retired soon, she is an elderly lady and even if one can work in Sweden until 68, retirement age being 65, I know that soon I will have to select a new oncologist. You have received the vaccine too, I really hope this is not related. Although I am following a blog, a lady who got hormonal bc in 2013, she had two years later one enlarged lymph node on her neck, they did biopsy and MRI, it was bc but only found there, they took it away and since that she did not have any problems.

I will be thinking of you on Monday, let us hope for the best, hugs,Cherry

Suburbs

SpecialK, thanks for the information on the vaccine. Glad to hear it's still being tried. I hope you are on the mend and feeling better.

fluffqueen01, you are in my thoughts. Yes, lots of lidocaine and something to take the edge off followed by a good pathology are on order are called for.

I had my next to last Herceptin this week. One more to go. It feels rather anti-climatic. It's good to know it's nearly over and as I think back on the year, I never thought about getting this far. I focused on each step and side effects and just keeping going. Now that I am near the end, not having that constant monitoring and checking in every three weeks makes me a little nervous.

Anyway, I thank everyone here for listening as I would not have gotten this far without the support found here on the triple positive board. It is a special place

coachvicky

Suburbs ... It is a little scary not being checked so often.

Then one day you will realize it has been weeks since you got poked, tested, or saw someone medical and you haven't even thought about it. That will be a great day!

Congratulations for getting to the end. You have done well through this and helped others along the way.

Vicky

Suburbs

Thank you Coachvicky. When I started this adventure, I thought of cancer like a broken leg. It will mend and I will go back to being me. That's never going to happen. If I knew then what I know know, the road would have been more difficult. Starting on the work of finding that new normal.

coachvicky

Suburbs...

Such truth you write!

I, too, did not know the woman I would be on the other side of journey. I am thrilled at my happiest as well as the perky girls I got.

I was texting my Surgeon today. I am alive to have this Christmas because of his tenacity to look for the missing marker in my first lumpectomy.. I thanked him again.

Vicky

Anonymous

I’ve done that a bunch Coach. It took three biopsies to find it but she pursued

Cherry-sw

Suburbs, congratulations on almost being done, I know exactly what you mean when you say you did not know from the beginning how hard it was going to be. I remember the BS telling us after the biopsy that at that point I was scheduled for surgery and radiation and can be back to work already in September. Then I started reading and the whole truth just fresker me out. Next week will be six months since my diagnosis, the whole life that I planned for these months was not pit on- hold these plans and the way we lived our lives are not there anymore. I really want to come to terms with my diagnosis and finding a new normal, I think I made some progress with the help of the anti-depressives. I want it all to be over but I know that I will always be scared of every ache and itch. This is awful but this is a new normal I suppose. Sometimes I tell myself what should I have done with my life prior diagnosis if I had known that I will be diagnosed and I always think about spending more time with the family, enjoying time with my kids, travel if I will be able to and now I am telling to myself that is what I should do after the treatment, I shall live the way I want to during the time I have left and I will be cautious about my exams and I will appreciate what I have. I have been crying for so long for the life I lost and at the end you cannot cry forever, there is the next day and it is up to me how to live it. Something like that, I just dread another period of freaking out caused by fear almost as much as I dread bc. Cherry

Suburbs

Hi Cherry-sw. I hear you. Like you, I read old posts and threads on this board and gradually realized there was much more to BC than treatment plan and it's all over and you go back to your regularly scheduled program. A common theme that health care professionals tell us is that we must avoid the internet. That's easier said than done for some of us. Many of us would rather be informed than surprised. It's a delicate balance. Everyone gets through their treatment plan in their own way. There are so many changes. I am not the same person that I used to be that is for sure. I am infinitely more patient and it takes a lot to get me rattled. I am inspired by everyone who is further along and living their new life. Anyway, we'll keep on and lift each other up along the way.

coachvicky

Yes, we do lift up each other.

I count all of you in this group as a blessing. I keep you in my prayers.

I am so happy to have another Christmas with my husband and my family.

Vicky

Cherry-sw

Suburbs, you couldn't say it better, I would rather be informed than surprised, this what I have been missing, these exactly words every time they told me to stay away from the Internet and I kept telling them knowledge is the power. They did figure it out though and are know very open with me, by them I mean the doctors, there is nothing more they can tell me and due to the specifics of this disease that terrifies the patients they would rather prefer we would trust them blindly. I will not be able to stay away from the internet even though I do not google all the time the way I did in the beginning. After all, if not for my googling I had never found this community and I do not know how I had done mentally in this case. I am very grateful to each and one who ever found time to talk to me, to send a couple of cheering words, you will be always in my heart Cherry

Anonymous

I agree. I think both my once have like that I can carry on a conversation with them and ask questions. I feel like I’m part of the team in my decisio

deni1661

Fluff - stay in faith and I pray for good results at your upcoming biopsy.

Suburbs, congrats on the last Herceptin! Each day you will find more peace in your new normal. I do agree not getting monitored as often is scary but I'm working really hard at turning the future over to God and not worrying about what might be. I want to focus on the joy I find in each new day. While I can't control whether cancer will come back, I am learning to control what I put into my body and managing stress better. I strongly believe that my poor diet and high level of stress caused my cancer. Maybe not but I am putting faith in the new behaviors I have adopted since diagnosis.


Hapb - glad to hear your heart has improved since you stopped Herceptin although you are at a crossroads on what to do next. I pray you come to a decision that gives you peace.

Cherry, I think you have made great progress since going on the anti-depressants. While the worry and fear is always present I can tell you have a more hopeful outlook. I personally think this comes as we move further along on the treatment path. You still have a tough road ahead but I am confident you will get stronger with each passing day! I start each day with reciting my thank you's and the gift of life is at the top of that list. When I focus on the positive it helps to diminish any pain or side effects I may be having.

deni1661

Regarding my diet - I like to cook up several batches of veggies for the week which "forces" me to eat them over the bad stuff because I hate to waste food. I just made a big batch of brussel sprouts, pretty boring unless you flavor them up a bit. I saute them in dash of EVOO, 18 year balsamic vinegar, onions, salt and pepper. Yummy! In my old days, I cooked them in butter and with bacon. I find they are more delicious the way I make them now. I also made a batch of green beans, caramelized onions, and mushrooms made in a dash of EVOO with salt and pepper. You can see I put onions in most of what I make; I think they provide a lot of flavor plus I read they are good for cancer patients to eat. I buy fresh herbs like rosemary, dill, basil, thyme and sage and throw those into whatever vegetables I make. I eat sweet potatoes and beets often - I roast those with a drizzle of EVOO, salt, pepper, thyme and rosemary. All of these veggies fill me up so I am less inclined to eat anything else.

Regarding the fasting - I try to eat no later than 7pm and don't eat again until sometimes noon the next day. I sip my warm lemon water and green tea in the morning. This keeps me from thinking about food and I rarely have hunger pains.

I try to not even have one bite of something sweet - it seems once I have a bite I can't control myself and I eat nothing but sweets for the rest of that day.

Kim Cee, it is a daily battle trying to eat right. I am 56 and my junk food and sweet treat habits are still right at the surface. I start each day with good intentions to eat all healthy foods but I don't always make it. If I can eat good most of the time i.e. 80% then I am in a much better place than I was before diagnosis when I ate terrible 100% of the time. You can do it too, one day at a time. We can do it together!

deni1661

Hapb I'm sorry your tests weren't better. This whole cancer business with the drugs we are taking is just unreal. They fix one thing but damage another. You are in my daily prayers that your heart is strong and your medical team can keep it strong to get you to the other side of this ordeal. Hang in there, hugs

rljes

Suburbs and Coach  Vicky - in hindsite - since I'm taking what you two did - I'll be going in for Round #2 next week - but Hindsite - what can you tell me? Anything specific you can give me advice On? Thanks  

rljes

Deni1661 - I am also trying to eat better.  I tried to bake Kale chips the other day. burnt them, I couldn't tell what they were suppose to look like - but i tried again and turned out pretty good!  I like to bake zucchini and squash, sweet potatoes and now Kale chips with EEVO and pepper - I dislike salt. Especially since I gargle the Baking Soda and Salt all day long.  Just pepper.  Its Baby Steps for me.  

PoseyGirl

Hi ladies,

It's been a couple weeks since I posted. I have tried to go back and read the last six pages .

I see there are some ladies here talking about treatment and some symptoms. The red face was new for me to read about, but there are a few of you who had that - interesting! I didn't have that.

I do agree that you sound so much better, Cherry - you are doing so well. I also appreciate you reaching out to me via pm to show support - thank you xoxo.

Hapb, I am sorry all this has been so so difficult on you. Am I to understand that your heart is starting to recover? Did you end up starting another AI? I saw a diet link you posted and will check that out.

So last time I was here I was nervous about upper thoracic aching that started up about 3 weeks ago. I was highly stressed as they sent me for a bone scan. I had it this week and it is clear. This is great news, but here is a question and I'm wondering if anyone has an answer...last scan I had was in July. At that time they noted slight uptake in my right shoulder, lower left lumbar, manubrium (sternum), mid cervical spine. These were all new areas of uptake from previous scans in 2016. The only one area that showed up on all three scans was my right MTP Joint which is the big toe area. I know I'm arthritic there. So here's the question. This scan this week did not show any of those newer areas of uptake from July?! The only one that showed was the mtp joint again. So what could happen such that areas show uptake one scan, and then not in the next scan? Is this possible??? I didn't know there could be transient changes.

I can't figure why I have this pain. Can Letrazole cause actual bone pain? I have knee pain and stiffness, but didn't think Letrazole affects bone. Thought it was just joints.

Have a lovely evening, all!

coachvicky

rljes

You asked and here is what I offer:

Find a way to calm yourself ... prayer, meditation, yoga ... something.

Walk at least 6 days a week. Especially walk your day of treatment.

Drink water ... lots of it.

Eat well and if you are fat, take off the weight.

Stay positive ... For me, I was given a second chance at life.

It is YOUR body, you decide. No one does anything to me that I am not comfortable with. And (as I have written before) they better wash their hands before touching me.

Go easy on yourself. It is really OK if your floors need cleaning. But do something everyday to keep things up. I found if my environment was clutter and un-kept, I became unsettled.

Become the person you always wanted to be and can be now. I hated hearing I had cancer ... especially breast cancer. But I though when handed a sh*t sandwich, make the best of it! Having cancer opened a new way of being for me. I am in a better place than I have ever been in.

If you need something to help you thru this, get it. However, don't accept ANYONE telling you that your are depressed unless they are qualified to make that diagnosis. You may find yourself in shock (I was) or have anxiety. Different mental states require different drugs.

There is a great book by John Piper titles "Don't Waste Your Cancer." Please read it.

I promise, life will get better. It takes time. Again, go easy on you.

Best wishes on your journey. Let me know if there is anything else I can do.

Now, I am off to get ready for a British Christmas party hosted annually by two of our Brit friends. I am going to drink wine and if DH brings cigars, take some puffs. I am wearing semi tight jeans and a cleavage showing top. I will be the only woman there over 50 with perky t's!

Vicky