TRIPLE POSITIVE GROUP

SpecialK

cassie - they are a piece of cake.  It is not closed like an MRI - just wear comfy clothing.  You lie on your back on a flat table and a bar moves above you - takes about 10-15 minutes.

windgirl

Cassie, agree with SpecialK, I did it twice in the past (pre cancer) due to family history of weak bones, it was really nothing you just lie down, good luck hope the results are good.

runningcello

@formydaughter TCHP is a kick butt regiment therefore know that you are in great hands!!!!

@wprmoon, welcome! have you looked into genetic testing for your age on diagnosis? i have the PALB2 mutation.. BRCA1/2 are the more common ones but definitely not the only mutations which may potentially explain such a young diagnosis. also, as you embark on your chemotherapy journey i wish to offer you some helpful tips. they really work wonders!!!!

if you are on the taxotere, carboplatin, herceptin, perjeta plan - this is what i recommend.

1) your hair will slowly begin to fall out in the coming days and week, it may just thin out or most likely it will fall out completely. instead of watching this happen, make a celebration out of it and have a head shaving party with your family. it makes the experience slightly more tolerable. i still am praying for the day i can tie my hair in a pony tail.. slowly but surely it's growing back.

2) diarrhea post nausea/vomiting from chemo is very likely and real - perjeta seems to kick everyones but in terms of uncontrollable diarrhea.

3) invest in jolly ranchers, hersheys kisses, or flavored popsicles to get the metal taste out of your mouth and to also hydrate your body on the days you just can't stand to look at food.

4) prevention is better than cure. dehydration as a result of chemo is very real. this is what was implemented for me after i went to the hospital for dehydration. it helped a little but if you do it from the beginning it may help you more. when you go into the hospital for your neulesta shot a day or two after chemo, you should have a plan with your doctor where they give you fluids. you may also get an IV of potassium - everything just goes low as a result of chemo but IVs to give you a boost of what you're missing prior to the hard days of chemo will really help, especially in terms of flushing the toxins out of your body when you arent able to eat and drink enough.

if you have any questions, please let me know!! i hope this journey is one filled with happiness, hope, and positivity for you. the days may seem to pass slowly but know they will pass and you will survive this!

RobinLK

Thanks ladies! I meet with the endocrinologist in May. Will discuss options with him. Once a year sounds good to me.

lago

Robin I too get Prolia although typically when you can't take the pills (I got gerd too) they go to Reclast next. Reclast is an infusion once a year. Prolia is a shot 2 times a year.

PMR53

Wpmoon welcome ! I will complete my last cycle of TCHP on Monday March 16. This will be a total of 4. I had neoadjuvant. My surgery will be sometime in April. It really worked and shrunk my tumor 40% I had an Ultrasound yesterday. Like the other gals said stay hydrated. I drank water, Gatorade and lemonade. Took my nausea meds first 8 days after and hunkered down. Ice those fingers and toes each Taxotere infusion. I am thinking I may escape with intact nails. Do not get constipated. It can change fast either one or the other. We are here for you!! One other side effect that was bad for me was my nose. It hurt and the insides were swollen and bled. Get a humidifier. Use qtip with Aquaphor for inside and don't blow to hard. I had a few bloody noses. Your skin will get very dry. Use lots of lotion on every inch. I had to put Bio-oil on my face morning and night. Try to get stuff done when you feel good and prepare prepare. Make a calendar and write how you feel and your SE each day. That way you can look and see trends each cycle. Report SE to MO. Take care and bless us all.

Patty

RobinLK

Thanks Iago! I know my PCP said infusion. I know it is not Prolia, I specifically asked about that. It was a name I knew! He said Prolia is generally for post menopausal women. He does not believe I am there yet, due to the evidence of cycling on my vaginal ultrasounds.Which is why he feels I am not getting protection from the tamoxifen, but that it's contributing to the bone density loss.

Blownaway

Cassiecat - wear pants with no metal (sweats) and you won't have to change clothes.

Blownaway

Isn't "Forteo" given intravenously for osteoporosis?

SpecialK

blownaway - from what I can tell Forteo is also an injection, not an IV.  It looks like it is done like Neupogen - over a number of days, self injected.  It looks to also be hormonal, so maybe why it is not as familiar for breast cancer patients?

RobinLK

From what I could see, a biophosphonate(sp?) is the infusion preferred for premenopausal BC patients with osteoporosis. Forteo looks like it was used mainly in those who already have fractured something.

ArleneA

Hi ladies.  Since many of us here are getting close to our 5 years on the hormone sucking drug, what are your doctors saying now about 10 years.  I'm on Arimidex/Anastrazole and am being told I'll remain on it for 10.  I know others who are switching to another the last 5 years.  However, my husband's friend is an onco in NY and he says there are basically no studies on 10 years and the long term effects of it.  Not sure what I'll do when 10 years comes up.

Thoughts?

ashla

There is a new clinical trial for early stage her pos cancer . Some of you might be interested

"The 70 patient study will be an open label single arm Phase II trial of PB272 monotherapy administered to patients with HER2-positive early stage breast cancer who have previously received adjuvant treatment with trastuzumab. Patients will receive extended adjuvant treatment with neratinib for a period of one year. Patients will receive primary prophylaxis with high dose loperamide (16 mg per day initially) in order to attempt to reduce the neratinib-related diarrhea. The primary endpoint of the trial is reduction in the incidence and severity of diarrhea.

d.http://www.marketwatch.com/story/puma-biotechnolog...

LindaKR

Jersey, you can get truncal lymphedema, mine started around my incision and under my arm - the LE therapist can show you how to do self massage to move it, mine also recommended a compression bra, which worked wonders.  Sorry you are having so many side effects.  I ate a lot of plain, organic yogurt, the only time I got mouth sores was the treatment that I quit eating it because I though it tasted yucky, I ate it again the next treatment, and no mouth sores.  I just a few spoons a day, but it helped.  I also made some mouth wash - for every cup of water it had 1 tsp each of baking soda, salt and xylitol, I rinsed my mouth with that several times a day too. 

LindaKR

My onco is leaning toward 10 years for the AI, he also said no studies in yet, but the tamoxifen studies recommending 10 years make him lean that way.  Seems that it would work the same way.  There's a group on BCO talking about that,  AI's over 10 years link

Lhuff

I'm still very new here. I'll be on herceptin for 12 months, along with other. I have to have radiation

Will the radiation treatment start after the 12 months of herceptin

SpecialK

lhuff - radiation usually starts about a month or so after chemo ends, but while you are still on Herceptin only infusions.

ElaineTherese

Hi lhuff!

SpecialK is right -- I'm doing radiation + Herceptin (every three weeks) right now. My MO also had me start ovulation suppression + hormonal therapy (Aromasin) at the same time.

Hope chemo goes OK for you!

CassieCat

Lhuff, I'm in the middle of rads and getting Herceptin-only infusions. You can see my various dates in my signature.

Thanks for the tips and reassurances about the dexascan.

Jerseygirl927

sorry, lost my place here, going for hercepton infusion tomorrow, finally feel a little human after a few days of no major issues, minor end of day headache with a full face of acne. Has anyone heard of this? My face, forehead, neck all have zits that can pop. I look like someone hit me with something and its red and pimply all over....I am not sure what to use or do, I will ask tomorrow if this is a side effect or possible chemical burn from the drugs? Dexiscan is no big deal, I have osteopenia and know I will need the shots as with the gerd, can't take the pills and already have had 3 different bone fractures in the past 5 years.

Did any of you join the new study. Share the journey, I did, figure if I am going thru this crap, at least maybe it could help someone in the future. Ok heading to bed, sleep pretty well lately, and appetite is back, hope it continues after next weeks big guns

SpecialK

jersey - are you taking steroids?  They can cause acne, very common.

Mamadewbs

Hello everyone! I hope you are all doing well. I finished my 4th TCHP treatment last Wednesday. Today is the first day that I'm feeling ok. I am down mentally today though. I just don't know if I will ever really be ok again. Right now I feel as though breast cancer has taken over my whole life and I may never regain control. I'm also so tired of trying to explain the HER2+ part of my cancer to people. And if someone ever does know about it, they look at me as though I've received a death sentence. Sorry I just needed to say this all out loud to people that understand. I don't feel like anyone understands where I am right now.

Pbrain

Forteo is recombinant parathyroid hormone. Although PTH is a giant robber of bone calcium, in a giant dose, it seems to actually build bone. But I agree with Special, it isn't normally prescribed for BC patients. But actually, I don't think it is a very popular drug anyway, with all the new ones.

Lhuff, I used to go to Herceptin, get my port accessed, wait for my blood tests and then my radiology tech Suzanne would pop in and say to my nurse "we can take her now" so I'd walk across the cancer center, bald, with my port crap hanging out and go get a few rads. It was always amusing! I felt like a warrior, wandering through there bald...tee hee!

Welcome to all the newbies!

Eileenohio

Jerseygirl927   -- I too have osteoporosis. My MO prescribed Tamoxifen due to my osteoporosis. She said Arimidex and the others were too hard on the bones and she did not want to put me at risk for a bone fracture. I suppose my age has a lot to due with her decision,however I see her March 18th and I will ask her again why I have Tamoxifen at my age. I am now 76 years old diagnosed at age 73.  Just wondering if Tamoxifen is what I should be taking.  

Blownaway

Eileenohio - I think Tamoxifen is what all of us osteoporosis gals take.  I am now 58 and went through menopause 10 years ago, then had complete hysterectomy.  My onco put me on Tamoxifen due to the osteoporosis.  I've been taking it for almost 2 months and so far no side effects to speak of.  I've had hot flashes/night sweats since April when B/C was diagnosed and the docs took away my Premarin. The hot flashes are not any worse or any better with the Tamoxifen.  I take Effexor (started at the lowest dose and have bumped it up now to 75 mgs - still not much relief for the hot flashes.  I intend to ask for another increase (not sure how long you have to wait between increases).  If that doesn't help eliminate the hot flashes, I sure wish someone would recommend something that helps them.

Eileenohio

Blownaway-   I have been on Tamoxifen for 2 1/2 years.  I have a couple effects but they are tolerable. I am one of the rare ones that has a persistent vaginal discharge that requires me to wear a panty liner.I never had hot flashes but I do get night sweats not terrible but enough to make my nightgown damp,finally the worst side effect I have is thinning hair. My hair is still very thin so I still wear a wig for important occasions but otherwise I just wear a hat.  I feel that the side effects are a small price for being cancer free..  

 

lago

I now have osteoporosis but my MO seems to hate Tamoxifen. She will only prescribe it if I refuse to take the AIs

Eileenohio

Thanks Lago-   I am going to talk to my MO about this when I see her next week.

 

Mommato3

My MO wants me on Tamoxifen for two years before switching. Last fall I was pretty adamant about OS + AI but after a lengthy conversation with her, I changed my mind. She is really concerned about bone loss and heart issues. The heart was the biggest consideration for me since I had adriamyacin. I'm not sure I'll go the full two years though. If I remember correctly from the SOFT trial there was only a two percent difference between OS/Tamoxifen and OS/AI. My ovaries are being suppressed right now from chemo. I'll switch to OS if they decide to start working again. I'm really hoping they don't. We're checking my estrogen levels every three months to see where I'm at. I'm not sure Lago why your MO hates Tamoxifen. I know an AI does better to prevent recurrence but Tamoxifen has done a great job too. I wonder statistically how much of a difference there is between an AI and Tamoxifen for post-menopausal women.

lago

Mommato and EileenOhio I went into chemopause but given my family history and I was already perimenopausal (age 49). She puta me on AI from the beginning but tested my estrioal levels for 5 months. When I was having trouble on Anastrozole and wanted to quit and maybe try Tamoxifen she was pretty adamant that she wanted me on Exemestane and actually said "Well Tamoxifen is better than nothing." I don't think she likes the SE of Tamoxifen either.