TRIPLE POSITIVE GROUP

SusanBP

Camann: I am. My first 12 rounds are Taxol, herceptin and perjeta (every 3 week). Then I go to A/C every other week for 4 treatments. After that, I believe I am on the herceptin for the rest of the year. I will also have a lumpectomy after the chemo. Not sure about radiation, yet.

:-)

SpecialK

zoziana - I assume you are referring to Reclast? If so, I did not try it - I had a hyst/ooph at 45 and became osteoepnic afterward, tried the oral meds (both Boniva and Actonel) but couldn't tolerate due to previous reflux surgery. At that time military hospitals did not do Reclast (zoledronic acid) IV, so I just did nothing but stayed stable until chemo/Femara. I have tolerated the Prolia injections well and they have reversed me to a normal density. My MO indicates I will be stayingon the injections even if I go off AI drugs because this drug has been shown to be beneficial for BC patients.

mommato3 - the high risk earlier recurrence comment was made by my MO, and while I didn't ask him to elaborate beyond ordering a PET to check my status, I think he might have been making reference to patients who have had a non-mets recurrence prior to the five years and then had BCI testing at the five year point. This was mentioned during part of the conversation between us when he was discussing his communication with the local Biotheranostics rep, and I didn't ask him to elaborate because I am already at 5 years. This is what prompted the PET order though, since I assume I am NED but have not been scanned since a hip/lumbar MRI for sudden unexplained hip pain in Feb. 2015. Also, the scores (you are given a score that corresponds to a percentage) reported out on the BCI test are based on lymph node negative patients, so they do not factor in either Her2 status or LN+ in that score - you have to assume some level of added risk. Mine puts me at closer to a 20% chance of recurrence after 5 years, not factoring in the nodes. The studies for 10 years on Tamoxifen are in and show benefit, the studies for AI drugs are not complete yet. MOs that are keeping their patients on AIs longer than 5 years are making those decisions for each patient individually, I assume, based on their cases/risk.

cris8325

Hello. I am starting my first treatment Wednesday May 4th. I am terrified of the unknown I guess. Is it really as bad as it seems?

ElaineTherese

Hi cris8325!

I see you're starting AC. I had four infusions of AC, and they weren't that bad. I got my infusions of AC on Wednesdays, and would be OK Thursday and Friday (thanks to the steroids they give with chemo). Starting Saturday, I would feel lethargic and I didn't have much energy. By Monday, though, I was able to get back to the office and get some work done (yep, I worked through chemo). I drank lots and lots of fluids, and worked at home as much as possible.

Will you be getting Neulasta shots the day after your infusions? Some women feel achy after that. To avoid that side effect, many take Claritin (allergy medicine). That didn't seem to make much of a difference for me; I never really had any bad reactions to Neulasta.

Remember that each woman is different. AC was OK for me, but it flattened some really strong women out there. There's no need to be a hero; if AC wipes you out, just gather your support network together and take it easy.

Best wishes!

Zoziana

Special K-Thanks for the bone info. Yes, I am talking about the zoledronic acid which I will be getting. I'm osteopenic too--not sure why but I do only have one ovary and I'm the high risk group... I guess all those years of weight bearing exercise and lots of calcium didn't matter!. So the chemo and AIs are likely to do a number on me. Good to know you have had luck with Prolia and building back bone--that is encouraging! Thanks for the info.

Heathet

just got my path report back - I am ER+\PR+ and HER2+. Had a BMX on the 19th. Meet with my Onocologist may 16th. I know I will receive targeted therapy and hormonal therapy along with chemo and radiation. What can I expect with this diagnosis and treatment ?

ElaineTherese

Hi Heathet!

With this diagnosis, treatment is a marathon not a sprint. Chemo can last from 2 -- 5 months. Radiation can take as long as six weeks. Unless your heart gives out, the Herceptin infusions go on for a year. Because you are ER+, hormonal therapy can last from 5 -- 10 years.

Do you know what regimen of chemo you'll be getting?

You'll probably get lots of heart scans, just because of the Herceptin. (I also got them because I did AC chemo.)

You may want to check with your Plastic Surgeon to see how you can best protect your reconstruction during radiation.

Hope treatment works for you!

cris8325

ElaineTheresa I will not be getting the Neulasta as of now they said because I am young. Scary. I have scheduled my treatments on Wednesday hoping that I will be able to continue to work. I am a single mother of two. But I do already work from home so hoping that will help. I was wondering if I started drinking lots of water today will that help?

Mommato3

Cris, I found the more water I drank the day of and day after my infusion the better I felt. Actually, as time went on I started to dislike the water. Chocolate milk was my friend during my AC treatments. For some reason it didn't taste bad. Just make sure you stay hydrated. Good luck with your infusion tomorrow!

momwriter

Cris,

Drinking water is great. I also found ginger capsules really helpful for nausea prevention. Everyone morning and every night starting the night before infusion. . I think I got emend with my infusion and then after the first week I may have taken just one capsule of campsesine on day 3. I did slow down on day 4 an 5 especially (sat and sun) but felt pretty good the following week.

Also I rinsed my mouth out with a solution of water, baking powder and salt a couple times a day- kept a little pitcher in the bathroom. That kept mouth sores away. I couldn't bear the taste of the mouthwashes so it worked for me.

Good luck- listen to yourself and rest.

Heathet

ElaineTherese- I don't know what my regiment will be yet but my BS mentioned adriamycin, taxol and cytoxan and I think taxotere as options. I'll find out more in the next 2 weeks when I meet with my Onocologist. I'm feeling a little overwhelmed and nervous about the treatment. I'm working at trying not to get too far ahead of myself! I told my mom chemo won't start until I heal from my mastectomy she freaked out a little bit - she's older and doesn't understand its a process.

SusanBP

Heathet: I started my chemo last week and it is going well. I did take the time (it took three months to get final diagnosis) to get in the best shape I could. I started eating super healthy (no more sugar or anything processed. Also I am vegan)I lost weight (I needed to), and exercised like a maniac. I am completely convinced that it is helping.

I was originally diagnosed as ER+/PR+. But my doc ordered 8 more biopsies (this is what happens when you are at an amazing place like UCSF) and on one tiny strand they found a tiny amount of HER2+. So, I am getting the whole treatment. I even have some lymph node involvement.

I want to let you know that all of my doctors are extremely optimistic for a full cure. We are the lucky ones. We have cancer types that respond to treatment. Heart problems from the herceptin are rare. I think less than 4% and if you start with a healthy heart, so much the better.

I got my port in today...it really wasn't bad and second infusion is tomorrow. It is my taxol/herceptin day. I am also cold capping which adds a lot of time but hopefully, I will keep most of my hair.

Good luck!

NattyB

Hi Heather,

I was glad to see you (well not glad glad but I hope you know what I mean) join this group. I'm triple pos and am doing your same surgery first but silicone implants and am anxious to hear how you recovered. My chemo will depend on path at surgery either TH or TCHP with the Herceptin being for a full year regardless. Initially the MO said 4 weeks post op is when I would start but if my drains come out sooner, it will be sooner. I had an ECHO and no other testing besides labs for the chemo regime. They are placing the port at the same time as my surgery. I see my MO 2 weeks post op. Hope you are recovering well:)

rleepac

SusanBP - I'm treating at UCSF too - I'm actually 10 months PFC but I have an appt with my MO next Tue so I'll be making a trip to the city (from Manteca). Anyway, they have been awesome but they do tend to be a little 'biopsy crazy' LoL. At least they found you're HER2+ so you'll get all the right treatment. My friend (also at UCSF) had 9 biopsies and 8 of them were triple negative but the 9th one showed ER/PR- and HER2+ so she's getting Herceptin/Perjeta too now.

You're in good hands! Good luck on your treatment.

Heathet

NattyB - I am recovering really well from my BMX. I also went direct to silicone implants. The pain is definitely manageable. My surgery was the 19th and I was home resting the next day. I took the pain pills for the first week and now just Tylenol for the pain. I can't raise my arms above my shoulders for another 2 weeks so washing my hair is difficult but my sister and friends have been a great help ! I can fully shower now and I'm walking around a little more each day. I had 2 doc appts today and I was super tired afterwards so I took a nice long nap on the couch. I'm usually an active person so I not used to resting but I have to say it feels pretty good napping on the couch watching old movies! I'm just taking it easy and listening to my body.

SusanPB - thank you for the positive words ! I'm glad to hear that our cancer types respond well to treatment! It's really a comforting feeling hearing from others going through this.

lago

Sorry for the repost

I am DONE with Exemestane (ESD)! My MO feels given the issues I am having and there are still no definitive results that an additional 5 years is beneficial she feels I should stop. I think the fact that I came in with my foot in a boot due to a stress fraction in my foot really helped her decide. She said I shouldn't be getting a stress fraction in my foot when on Prolia. She now wants me to visit with the Rheumatologist again to address this. Can't get an appointment till mid August… and I am not a new patient! What!!! That's nuts. My Prolia is on hold till then but I'm due now.

So I did my 5 years

Cowgirl13

Congrats Lago!!! Done with the ESD...whew!

SpecialK

lago - I am a little jealous, I was hoping my MO would say the same, but no. I am not jealous of your boot - and what is up with that kind of wait to see the doc? Sheesh!

Zoziana

Congrats, Lago! I know rheumatologists do tend to book 3 months out, but perhaps you could get on a cancellation list...that does seem like an awfully long time!

momallthetime

Thank you ladies for your advise. Could I ask you, do you take Protonix as a matter of fact, or only when feeling the burning? She was on it, but decided to get off it on her own, she is so fed up from so many meds. Also, what about Neupogen? Is it being recommeded all the time? Again, last yr when she was on this tx, they told her to take it like at least 3x wk, she did it herself at home, but now, doc does not recommend it. We would love to hear what the majority does regarding these issues.

Thank you for all the kind words, and take care everyone

NattyB

Thank so much Heathet - I'm relieved to hear that you are recovering so well and it's great you are up and walking everyday!

fightergirl711

Hooray lago! But sorry about your foot, had a stress fracture in my shin a few years ago and it was a hassle. But I do miss those days when that was the extent of health issues!

Last AC is scheduled for May 12, first Herceptin-only May 26, surgery June 7. Opted for re-excision - my breasts aren't huge or anything (between B/C) but the surgeon was pretty clear I didn't need a mastectomy. I do need ALDS. She said no drains, they are more trouble than they are worth for this, if needed she could aspirate during follow up. And I apologize if I shared this already, I can't remember anything these days. Let's pray that the chemo has done it's job!

lago

Special I was shocked too. But I don't have any node involvement granted large tumor. Her gut tells her there would be benefit staying on it but with no data and the fact that my bones are having issues as well as weight gain from another drug I'm taking due to SE of Exemestane factored into the decision.

Zoziana I did ask to be put on waiting list. 4 months for a new patient makes sense. That's what it was the first time but I am not a new patient. I'm also on a schedule for Prolia.

Momalthetime I took protonix or Nexium the entire time I was on chemo once prescribed. Check with your MD though.

edwsmom

Finished my last radiation treatment yesterday!

I'm now just doing Herceptin until October and Tamoxifen seemingly forever...lol.

Did anyone talk with their doctor about taking calcium supplements? What did they say? Take them or no?

KateB79

momallthetime, Protonix is one of those that works best if you take it daily. I took it starting with my second infusion (TCHP--carboplatin is hell on the digestive tract), and it worked quickly and well.

edwsmom, I take lots of supplements. Tamoxifen has some bone health benefits, and my MO doesn't suggest taking calcium supplements unless we switch to an AI. That said, definitely ask your MO what s/he thinks, in your case, about calcium. IMO, magnesium is just as important, if not more so, especially on tamoxifen (I'm looking at you, leg cramps!).

heathet, you might ask about TCHP. It's no walk in the park, but it's easier on the heart than AC+TH.

Mommato3

Lago, Congrats on finishing your five years!!! I have to say I'm pretty shocked too. Your MO seemed to really be pushing you there for a while to keep going with an AI. She didn't even want to consider Tamoxifen which does help post menopausal women with their bone health.

Edwsmom, I would ask your MO about taking calcium. I take a daily vitamin and extra calcium but I'm on an AI. Tamoxifen can cause bone loss in premenopausal women.

lago

Mommato3 My NP talked about Tamoxifen but my MO didn't support it. I think she hates Tamoaxifen.

Anonymous

Lago, I told my ob/gyn and onc that I would be happy to have a hysterectomy so I could go back on tamoxifen and they both said no. My ob/gyn doesn't like it at all.

Congrats to you on no more ESD! I will be at 5 years in mid July. My next onc aPpt is in October. I will stay on the pill until I see him then and we will decide. He said the ASCO meeting in June has a report on the study measuring the ten year AI combo with tamoxifen versus five years. He want to see the report before committing. Said if it's minimal, he will recommend to stop.

I want to stop and I am scared too, lol. And then to move to yearly appts. Ugh. I like somebody thinking about me. My biggest serious problem is that I keep having areas of arthritis show up and it is all since I started taking an AI. That can't be a coincidence.

lago

Fluff Yup I have some minor arthritis too but I know it could be post menopause related. My sister has had worse issues and she's only 2.5 years older than me and never had cancer. So we do need to be careful not to blame all this age related stuff on the AIs.

VioletKali

Hello everyone, I am coming up on my 2 year survival mark of June 19th!

Recap 1.7cm tumor, triple positive. Bilateral MX w reconstruction. I chose BMX because I did not want radiation, I would have refused regardless of node status.

TCH chemo. Stopped at 4 rounds d/t side effects quality of life. Stopped H at 8 months due to same.

AI and OS for 5 months, terrible unrelenting bone pain. D/C that.

Could not use tamoxifen because I am unable to D/C prozac and increase effexor. I tried and became suicidal.

Here I am, happy, no regrets.