TRIPLE POSITIVE GROUP

Jerseygirl927

get several opinions, sounds like right course, watch soy products they are estrogen based, anything that could produce estrogen, body mass needs to be lean, my breast surgeon, female, says your body can make hormones at will, so keep that in mind, whatever kills hercepton the best go with, just keep an eye out for side effects, hopefully none ever.

Moderators

Creativevintage-

We just wanted to welcome you to our community here at BCO! We're sorry for the circumstances that bring you here, but we're very glad you've found us, and hope you find the support and encouragement you need, when you need it most!

You'll get lots of feedback and support here on the boards, but if you ever need assistance in any way, please don't hesitate to reach out to us. We'll be thinking of you!

The Mods

lago

Creativevintage Sometimes they do give you too much. Chemo is given based on skin area calculated by height and weight. It's not always 100% accurate. They should reduce you a little bit. There are other things like giving you weekly Taxol instead that may not be as hard on your body. If this continues to be an issue with the taxanes (taxotere or taxol) they will switch you to another chemo. I do think reducing your dose should make a huge difference. Discuss all of this with your oncologist.

Jumpship

I would like to know if what I am experiencing is normal. I finished TCH mid-March. I started tamoxifan May 18. My legs feel very weak and when I lay down I want to cry the fatiguing pain just doesn't go away. Tylenol doesn't help. MO said it's post chemo but I'm wondering if it is tamoxifen. I can't do 5 more months of this let alone 5 years.

BlownOffCourse

minivan - it's probably the TCH. That's exactly how I felt after chemo. I couldn't walk from one room to another without extreme weakness in my legs and debilitating fatigue. I tried a few things, but nothing really helped but time. It was 8 to 10 weeks post chemo before I really began feeling better. ((((Hugs)))) to you, I know how hard it is.

SpecialK

The muscle fatigue is most likely a function of low hemoglobin.  The further out you get from chemo the higher your hemoglobin should go, until it resumes a normal level.  Hemoglobin is what oxygenates your muscles - so low Hgb = tired muscles.  I would encourage you to eat protein and iron rich foods to try to increase RBC production and increased Hgb.

geewhiz

I heard that its the T that causes the leg aches - I had them terribly. I can remember walking with my son one day 6 months after chemo just praying that I could keep walking with him and that he would not notice how much pain I was in and how scared I was. I am over 5 years out from that but my blood work never fully recovered. I stay on the low side, but I do not have the leg pain any longer!! Woohooo!! So know that it is a healing process, and you will get better.

Jumpship

Thanks all. My blood levels are normal and I'm almost 4 months since the last chemo so I'm just so surprised by the nagging pain.

BlownOffCourse

I'm glad to know I'm not the only one with wonky blood counts. My WBCs steadily declined after chemo, to finally settle in on the low end of "normal." MO said I was anemic after chemo, so I took iron, then had to have two iron infusions, was low, but "normal" for a bit, but then was anemic again last week, plus my B12 was so low he said it barely registered on the test. My B12 had been tested at 6 month intervals, varying only slightly, and always in the normal range. Anybody have any ideas as to why it might have suddenly fallen off a cliff?

Creativevintage

I met with my MO prior to chemo today. He was very concerned about the severity of the side effects and ther duration. He feels the chemo brought on a return of the it's I had as a young adult. He prescribed new meds to help with that. He also halved the herceptin and perjeta and reduced the taxotere and the carboplatin to 75% of the standard dose. He cannot palpate either tumor, just some fibrous tissue where they were located. Yippee! I put some weight back on and in all lost only 3 pounds. He has also scheduled labs in one week to see how low my white count goes with the new dose. He did recommend the ice chips when trying the taxotere and carbo and it helped so far. Because of all the premed I sleep through the whole thing. They are going to reduce the Benadryl next time because I had restless legs and it was very annoying. I will be going back tomorrow for my neulasta and extra I've fluids to conteract any dehydration. All in all iwas much happier this time. So ar they are leaving my schedule for four I fusions and will add the final two after my next echo. My initial ejection fraction was 71

SpecialK

Keep in mind that when you look at the values for a lab test they are actually for an adult male.  Women generally test out on the low end of the value even when things are normal.

Blownaway

I lived on sugar free jolly ranchers. They really get you saliva glands going.

Creativevintage

I was just so surprised that all my blood counts returned to pre treatment levels and some were actually better! I do not have that burnt tongue sensation today, which I experienced last time by the I had returned home from chemo. I know I will feel crummy tomorrow, but I will definitely enjoy my free day today! I have the physical therapist coming today to work on building my strength and stamina destroyed by all the chemo and bad side effects from last I infusion, plus the hospitalization and being stuck in bed for most 14 days! Next round I will figure out a way to ice my fingers and toes to prevent any problems with my nails. They reduced my steroid dose too, because of insomnia and I will ask them to
Back off the Ativan/ benedryl pre chemo cocktail a bit to reduce the restless legs and sleepiness. I am dizzy and uncoordinated from it and I have found that I have to urinate a lot during the session from all the saline they use to administer the drugs.. I don't feel comfortable lugging around an I've pole when I am so off balance!

I felt just a tinge of nausea when I woke up this morning, but took my zofran right away with my morning tea. I am also going to look for psyllium capsules at the drugstore today as I have been reading that taking them can help with both the constipation and diarrhea caused by chemo. Then it's off for my nebulas to and some extra fluids. I was a bit concerned that my blood sugar was 261 yesterday, as I am not diabetic, but the doctor explained that the steroids can cause that and a rise in blood pressure, hence the dose reduction.

This forum is a godsend!

Creativevintage

NeuLasta, not nebula! Silly autocorrect!

MN_Sunshine

Hello ladies!

Well, I must admit I have been a "creeper" since May 4th and tonight is my day to step on out into the forum light. I am Stage 1 and triple positive with each of them being at 95%. My lumpectomy was on May 16. Total size 15mm. I now need to wait til July 10 before I can meet with my oncologist for a consultation (current overload of cancer cases and of course the 4th of July holiday is in the mix). I know for a fact I will be having radiation and I can wrap my head around that. What I don't know yet is will I need to have chemo. I did not think I would have to wait that long after surgery to find out my confirmed next steps.

With my incredible "creeper" abilities it looks like everyone who have been triple positive have had chemo. If I am wrong feel free to correct me. I would be completely fine being wrong. My reality is I just want to process that yes, there is a 50/50 chance that I need chemo or is chemo a for sure?

Any insight you could provide is much appreciated.

Suladog

MN,

The deal about TP as it was explained to me was that anything below 5mm (I was 7mm) and no nodal involvement was not necessarily treated with chemo or herceptin as it was considered over kill for such small tumors. In fact this debate even threw people like me who were well below 1cm, into a "grey area" where MOs didn't really know whether to treat with chemo /herceptin or not.

I had two different recommends one from Cedars Sinai in LA who said since I had a MX and no nodal involvement nothing more was needed except an AI

However UCSF recommended a milder short form of chemo and herceptin based on a study released by Dana Farber Cancer Center at the end of last year when I was diagnosed. They said that Taxol/ herceptin for 12 wks followed by herceptin for the rest of the year after that was very beneficial and important for all HER2 + patients even those with small tumors.

If you are over 1 cm they always treat with chemo/ herceptin, now, even below 1 cm they tend to do soalso.

I did 12 wks of low dose Taxol/ herceptin, and am done with that, and now going for herceptin once every 3 wk

Ramey

MN Sunshine- I too do a lot of creeping on here. Lol. I guess I would just rather hear what others have to say. But I just thought I would put my 2 cents worth in. It seems that the protocol for triple positive is chemo. It's the her2 status thatputs us in that category.
I am a year out from chemo and doing ok. Still have a lot of aches and pains but it's doable. There are so many great and informed woman on here. You will learn a lot!
Good luck with you journey!

MN_Sunshine

Thank you Suladog. I appreciate your response and insight. I am self-employed so for me I feel chemo is a game changer meaning I need time to figure out my plan of action on how to pay my bills etc if I am not feeling well. I am a person who likes to be proactive verses reactive. I am positive that all will work out but it is so hard to be on someone else's timeline to find out next steps.

I know I will be fine in time....I just need to get back in my positive place that I am in control verses BC being in control of me. Again, thank you for your feedback.

MN_Sunshine

Hi Ramey,

Glad to know I am not the lone creeper....lol!! I agree with you, it looks like the HER2 positive is the game changer....from what I see on our forums. It is so nice to hear you are a year out. I keep telling myself that in six months I maybe back to a "new normal". What you just helped me to realize is......that it is more like a year plus. Good insight for me to hear.

I am kind of a control/processor freak so in my head it might be best for me to just go into this thinking YES I will have chemo. I need to create my plan now to help me be prepared. #1 sell motorcycle that I rarely ride anymore and maybe refinance the car. Once I am back on track I would rather go on a vacation instead so it is o.k. to let the bike go.

Thank you again Ramey! I appreciate your input. Also, wishing you the best and I agree there are great ladies on this site. I am thankful.

Tresjoli2

So I live in Boston, and I am one of those who discovered their cancer VERY early. My tumor was only 1.5mm. I also had high grade DCIS with a microinvasion.  My tumor size would indicate no chemo.  However, my her2 positivity is very high (FISH of 4.8). my MO spoke with the folks at Dana Farber, and then with other MO's in the area - and the her2 positivity made me go with chemo. The Dana Farber study is indicating that a Taxol + Herceptin regimen in people with my kind of tiny tumor had extraordinarily low recurrance rates. I decided to go for spectacular odds and take the side effects. I'm only 40 and have two small children.  Good luck with your decisions.

Suladog

MN,

We're all here and I know you're going to do great

Ohiotripleplus

Had my fourth round of chemo today. Feeling pretty good now, but I came home and slept 4 hrs straight!!

I get an anti-nausea, benadryl, steroids each time. Also had got a long acting anti-nausea but this time the pharmacy had overlooked ordering it. So after talking to my oncologist, I decided to go ahead, with a couple tweaks. First he gave me IV Ativan and also a perscption for it. He thinks I have ancipitory nausea. Hard wired into my brain so I get real symptoms. Like a person avoiding a restaurant where they previously got sick. I'm also getting Nuelasta tomorrow and been advised to drink Ensure or Boost. I had lost 7 lbs since last treatment. (3 was weeks ago ).

knmtwins

So, I'm anal and pick up my labs and put them in a spreadsheet, so I got them today, yep the extra test to see if my iron is low, came back low... oh, look here, that's right, he said he was going to run my tumor markers... CA 27.29 19.5 well within range of 0 - 37.7; CEA 6.5, high, should be 0-4.0. All else looks good... I have an email in to my MO, as I have never had tumor markers run, so not really sure what it means, and for that matter not sure why he ran them. Was it my 50th birthday gift, was it because it was my 2nd to last Herceptin infusion, was it because my MOs is moving and his last day is my last day of Herceptin in 3 weeks??? In my mind right now, I'm going with, this is 'my baseline' and not a problem.

mom2threeboys

MN - I'll add to the valuable info others have contributed. I'm seen at MD Anderson and was initially diagnosed with 3.5cm DCIS, but surgical pathology showed grade III triple + 6cm DCIS with 2 small foci of grade II IDC that were 2mm and 3mm. Originally my MO told me I would only receive tamox (I have osteoporosis so no AIs). I was not happy with that as my only option so my MO brought my case before the review board. Recommendations were mixed with some agreeing with tamox only, others prefering Taxol + Herceptin and others suggesting the ATEMPT trial for stage 1 HER2+ BC.

I went with the ATEMPT trial and was randomized to the arm receiving T-DM1 (ado-trastuzumab emtansine...also known as Kadcyla) by infusion every 3 weeks for 1 year. For every 4 trial participants, 3 are randomized to T-DM1 and 1 is randomized to TH (the current standard of care). T-DM1 is an antibody drug conjugate with side effects that are relatively easy to deal with in comparison to chemo and is currently approved for use with metastatic BC. By using Herceptin as part of the T-DM1 conjugate only HER2+ cells are targeted. So, unlike Taxol, you are not delivering chemo to your entire body which results in fewer side effects. Both approaches use Herceptin and I have those typical side effects, but nothing too terrible.

I'm happy we have choices with triple + BC and hope you find a choice that works best for you. If you would like to know more about the ATEMPT trial, you can learn more here https://clinicaltrials.gov/ct2/show/NCT01853748 or on the ATEMPT discussion thread here on BCO at https://community.breastcancer.org/forum/80/topic/....

Best of luck to you!

MN_Sunshine

Thank you Mom2threeboys!! I appreciate your insight. I must admit much of what you wrote is a bit over my head but like everyone else on here I becoming more and more educated. I will do some more research to be prepared for my oncologist consultation. I appreciate the links you attached.

My mind often wanders to the women who were in the trails for the previous meds that now help us battle BC. I am thankful for each one of them! I also appreciate you for being apart of this new trial. I will educate myself more and then inquire about it during my consultation.

I am a mother to a 17 year old beautiful girl. It is my understanding her chances go up 50% due to me having BC. Though she is a teenager and life focuses mostly around her (I'm in the not so cool group to her.) I am doing my best to show her how to deal a "twist of life" and how to deal with it head on and with grace. She may not get it now, but in time she will.

All the best to you all!

Jerseygirl927

I have two daughter, one 33 the other43 and the younger daughter had her genes tested and they came back negative for bracca 1&2 . They told her that my BC% was only 5% because of my age. But she had a 50% possibility with her dads melanoma and his mOms ovarian cancer. They told her to check back in 15-20 years because they have her genetics but not all results are known today. More will become known as science and genetics catch up.

runningcello

Last infusion of herceptin on June 23rd! I am finished with my year long treatment!!! No more infusions!!!!

windgirl

congrats runningcello!

CassieCat

running cello, congrats! I am about three infusions behind you.

SpecialK

runningcello - yay!!!