TRIPLE POSITIVE GROUP

So we should start counting from the end of Herceptin? Or from the surgery/end of chemo? I am confused about what is valid for TPs

Reading back over the last several pages - had some responses.

saje - I receive my Prolia in my oncologist's office, but have to confess that I have never looked at the cartridge. Mine is very similar to the Neulasta cartridge and it is kept refrigerated. Sorry I can't help with any reference to the color. Hope you get it sorted.

moody - the trial I participated was essentially an immunotherapy trial - I don't think there is much of this ready for prime time treatment. My trial was for a vaccine and the efficacy was measured in t-cell response. This was a Her2 specific recurrence prevention vaccine.

mandeola - sounds like cording - can you get a referral to a lymphedema certified physical therapist? They tend to know how to deal with cords without causing more risk.

meowmmy - cellulitis is common if you have a seroma either from lumpectomy or mastectomy, and also if you have lymphedema. Having it in your finger may be indicative of hand swelling related to lymphedema - had you experienced any of that?

dizzy - I have had tumor markers since prior to initiating treatment - my oncologist does markers multiple times per year and also periodic scans - both over time, and for symptoms. I have had pre-treatment MRI and PET, an MRI a couple of years after chemo for hip and back pain that revealed oldness and an injury, but no cancer. I also had a DEXA scan to check for avascular necrosis from Prolia, but it was normal. I have had three post-treatment PET scans - one after chemo, one a year later, and one after my results from the Breast Cancer Index test revealed high risk of recurrence/low benefit from AI drugs. That PET was abnormal bi-laterally and I could not have an MRI because I had one implant and one tissue expander. I was already scheduled for exchange surgery for the expander, downsize of implant on the other side - so my PS did some biopsies of the suspicious areas, and removed a 3cm nodule that was sitting right where my tumor had been. It turned out to be a suture granuloma and all biopsies were negative for cancer, consisting of inflammatory process only. I had a subsequent MRI after healing from that surgery. Tumor markers are reliable for some people, and not for others, and can be influenced by inflammation. Not all oncologists use markers for this reason. If you are someone for who they are accurate, they are a useful tool.

iwbt - yay for the last chemo! It is "normal" for your blood counts to be low as they have been as affected by chemo as your hair. Platelets are necessary for clotting, unless you are in the normal range they won't operate. That said, platelets are the shortest lived blood cell - they regenerate every five days, so your counts could rebound pretty rapidly. As far as hemoglobin, it is dependent on your increase in RBC, so I would start consuming as much protein as you can muster - aim for 100g a day. Good sources are the usual suspects - beef/pork/chicken/fish/eggs/dairy, Greek yogurt, fortified cereals, etc. On Nerlynx (neratinib) it was just recently approved for early stagers in July of this year, there is not a great deal of data gathered yet on use for early stagers beyond the trial data.

http://www.breastcancer.org/research-news/nerlynx-approved-for-early-stage-her2-pos-bc

cherry - chemo is calculated by BSA - body surface area, that is why you are weighed each time you go for an infusion. Not sure how to convert mg to ml as one is a weight and the other is a volume. Your oncologist should be able to provide the dosing for you. Also, keep in mind that Taxanes cause bone pain, which dissipates after the course of chemo is done.

Just wanted to point out that comparing side effects from aromatase inhibitor drugs and Tamoxifen is a bit apples and oranges, even though the SE may be similar. Aromatase inhibitors control estrogen by suppressing the enzymatic (aromatase) mechanism that converts androgens to estrogen. AI drugs are given to post-menopausal women in whom it is assumed that the ovaries are not producing estrogen, and to pre-menopausal women who are suppressing ovarian function with other drugs. Tamoxifen is different in that it allows ovary-produced estrogen to circulate, but blocks the receptor on the breast cell. Both pre-menopausal women and post-menopausal women can take Tamoxifen, but AI drugs have a superior performance edge. Generally Tamoxifen is only used for post-meno women who have a co-morbidity that prevents use of AI drugs, or for whom the side effects of AIs are intolerable.

Dizzygirl.  Welcome, so sorry that you find yourself in our ranks.  We have an awesome group of ladies here and I have found so much information to help me through this detour that BC has brought to my life.  The encouragement and knowing that I was not alone in this helped me get through chemo.  I have been given ideas on combatting SE's, comforted when fear of recurrence entered in and also in finding out if my post mastectomy pains were normal.  I have laughed about how we describe our 'new' breasts or lack thereof and also about how feisty we have become when others (the public) have made comments that they obviously didn't think about before it left their lips.  The links have been a tremendous help to me.  I think that you will find our group a place where you can come to help you through this crazy time.

Melanie

SpecialK...wow, I am a nurse and you you educate me constantly. Thank you for all of your extremely informative posts. I see you are in Tampa, were you treated at Moffitt

SpecialK, I do agry with you on the discontinuing Herceptin, but the Taxol doses I get right now are low dense and I got so concerned when I red these articles someone posted here not so long time ago about low doses of Taxol, that although being less toxic they were facilitating for the metastases in the other parts of the body due to the inflammation they caused. In my situation I feel that I want to do everything I can to be able to tell myself that did what I could. According to the oncologist it is ok to resume Herceptin after two months. I just feel that low doses of Taxol is one too weak chemo regimen for the tumor I had that was able to siphon the cells prior removing at a horrendous speed and I feel that combining two different chemos will optimize my chances. This is on one side of the scale, on the other one are all the arguments you listed above. As always, you are so well-spoken, thank you. I need to make a pro-and-con list this upcoming week.

Anyone who has done both, how wereyour ACs compared to Taxol?

I am such a mess, I am a Libra, I cannot be given choices, I have such difficulties to choose

Cherry

cherry - I am a fellow Libra - my birthday was yesterday - I understand, lol! It is important not to have doubts, and I think if you have handled Taxol fairly well, the AC will be more intense but potentially easier than if you had done the AC first, then the Taxol. My observation is that AC, then T can be pretty debilitating. Make absolutely sure you get good anti-nausea control, and can go to your center for extra fluids and steroids, if needed.

kim - thank you for doing what you do - my mother-in-law and two sisters-in-law are nurses, one still working, the other had been a home care nurse when her kids were young. My mom had nursing care at home for two years, and I will forever be appreciative of the quality of care she received.

SpecialK, thank you, I widh I knew what to do. I want to continue with Herceptin so badly, have some serious thinking to d

hap - it is beyond ridiculous for the nurse to say she has not heard of bone/joint pain from letrozole, it is a well documented side effect.

cherry - I don't think a time-out from Herceptin will hurt you, ask the oncologist to lay out each scenario and their benefits for your situation.

bjquilter - welcome, do you have a scheduled appointment with an oncologist?

bjquilter - my wait was about 6 week. I was told they wanted us to be ready to start treatment after the surgery. The wait was hard!

I was diagnosed June 23 and saw my oncologist June 29. But I had chemo first, bjquilter. Since you had surgery first, they likely want a bit of healing time prior to chemo.

Hapb, I have often felt that the nurses in the chemo suite - while nice - were not super "up" on symptoms.

hap - not sure there is anything to do. Also, not sure there is much they can do either. You will either have side effects you can handle and keep taking the drug, or stop. When you talk to your doc ask about switching drugs, or speak with your pharmacist and see if you can use another manufacturer. Was the nurse you spoke with an infusion nurse? If so, they don't often see patients once they move from chemo to anti-hormonals, so this individual may not be as familiar with what you were describing. If she is the doctor's nurse, that is another story - she should be aware of this.

saje - glad you were able to inject the Prolia, and that it was ok!

Cherry, I did AC every three weeks for four infusions, then Taxol weekly for 12 weeks with Herceptin/Perjeta every three. My SEs weren't bad for either treatment. With AC: Fatigue, occasional body aches, and an awful taste in my mouth that lasted several days with each infusion. Never had any nausea or vomiting. With Taxol: Fatigue that was cumulative with each infusion and a funny taste that lasted about 24 hours after each infusion. It's a tough decision you have to make.

hap - I would not necessarily expect an infusion nurse to know much about anti-hormonal side effects. Chemo side effects, yes, but as I said - for the majority of patients on anti-hormonals they have left the confines of the infusion room, and don't see those nurses again so there would be little conversation with those patients about how they are doing on the subsequent meds. I don't recall ever discussing anti-hormonals with the infusion nurses while I was taking them and still getting Herceptin.

bjquilter - once you see the oncologist it is possible that things will move quite quickly. Most MOs don't start adjuvant chemo and targeted therapies until you are fully healed from surgery - these drugs inhibit healing so this is important.

debiann - I know at my center too that there were many types of cancer being treated in the infusion room - not just breast cancer, and the nurses did indeed specialize in infusions and did a wonderful job. Side effects from aromatase inhibitors come from the action of the drug on estrogen, but some also have problems from the fillers and additives in the generic formulations. I experienced side effects due to surgical menopause at 45 from a total hysterectomy/oophorectomy that are similar to what some people experience on aromatase inhibitors - I had (and still have on letrozole) hot flashes, achiness, insomnia, fatigue, suddenly high cholesterol and osteopenia - all of that was from the decrease in estrogen.

At my infusion center, people were being treated for dieases other than cancer too. That surprised me, at first I thought everyone there was a cancer patient, but there are other people who need medication interveneously, for example one girl had MS.

My AI side effects are just from the reduction of estrogen. I was expecting a much worse reaction because I get a rash or stomache upset from almost every drug I'm ever prescribed, but I'm tolerating arimidex well, I just miss my estrogen.

Hap that pain sounds terrible. Good to hear its improving. There must be something in that drug your body didn’t like. Perhaps you want to wait to try a different AI until after you finish Herceptin.