TRIPLE POSITIVE GROUP

After 10 years I still see my oncologist every 6 months. I just love him and have complete trust in him. I had the chance to go once a year but asked if I could continue every 6 months and he is fine with it. It's peace of mind for me.

Kat22: Thanks very much for your warm words. I am sorry to know the side effects from your hormonal medications. Would tamoxifen still apply to you? my wife takes that, seems manageable although it only has been 4 months so far.

WC3: Thanks so much for providing the link for clinical trial.

Well today I was getting my H&P infusion and they asked me how my pain was. I typically don't mention anything-always had a high pain tolerance and just didn't think it was newsworthy. But as I have mentioned lately I have had some significant joint pain the last several weeks which I believe could be from anastrozole. I got "honest" with myself today and told them about all issues I've been dealing with lately, bone pain, mood swings, hot flashes, leg cramps, sleeplessness. She talked with my OC and he said to stop taking them for 3 weeks to assess if issues are from meds. I see him on August 1 then we can talk about next steps. I'm glad he suggested this, I was going to ask him when I saw him in Aug but those wonderful infusion nurses really do a great job at caring for us. I'm excited to see what happens in the next several weeks, at least I will know if meds or arthritis getting worse.

I do exercise, almost 2 hrs a day, walking 5 miles and 30 minutes of stretches, or at least attempted stretches lately. I just need to get back to where I was before this darned cancer, I had some pain but not like it has been lately.

Take care all

Princess Meg:

Florida and Washington state. It might be worth a shot to contact them and see if there might be a way to arrange your participation though

I was initially advised by the pharmacist the very first time I filled my prescription to switch manufacturers if I had intolerable side effects. As coach says. the manufacturer does make a difference - in the 7.5 years I was on an AI, I took four different brands of letrozole (generic Femara), and one of anastrazole (generic Arimidex). My insurance denied coverage of name brand Femara, although I never tried asking my oncologist to state on the prescription itself not to substitute a generic, which a way around that for some insurance coverages. I had found a manufacturer with very few additives, and did well on that formulation for quite a while but they had stopped producing the drug when they went through a merger with another company.

Just want to echo ET’s experience regarding Prolia. I was osteopenic for at least nine years before my breast cancer diagnosis - I believe due to havingthe typical physical profile and having had a hysterectomy/ooph while still firmly pre-menopausal. Chemo and the first six months of anti-hormonals pushed me to osteoporosis. By my fourth Prolia injection I had recovered enough density to be considered normal. I continued receiving Prolia eight more times - for a total of six years - and had good DEXA reports all along. I stopped Prolia in March of 2018 and my Jan 2019 DEXA showed no loss of density.

princess meg - I went every six months for two years, and also had to go a month after each booster injection for labs. I went in June and July, then again in December and January, two times - so eight flights. The initial trial was an eligibility and consent appt, then the series of injections every three weeks - a 3-day visit, for six months. My trial was in Washington, DC - affiliated with Johns Hopkins - and I live in Florida. I actually live about 10 miles from Moffitt where the trial is that you are checking on. Once the boosters were done I was followed on the phone, backed up with any labs and imaging from my regular oncology visits for the remainder of the trial.

princess meg - some airlines have some medical treatment rates (I believe Delta and Southwest do), but I also took advantage of frequent flier miles, the extra miles you get when you open a new credit card, and airfare deals - fortunately there was a regularly scheduled flight on USAirways at the time, $189RT, that I often took. I selected the DC location because I had lived there for 10 years prior to my husband's assignment here in Tampa, and knew how to get around on transit. There was a hospital shuttle that picked up and dropped off at the metro station. All of my friends who lived there who had asked me "how can I help you?" let me stay with them, and I also stayed periodically with my college aged son (which was hilarious!) and that was an opportunity to spend time with him since he was not local for my treatment. For one visit we drove and scooped up my in-laws on the way so we could take my FIL to the WWII Memorial and we had a fun weekend in addition to the medical stuff. Here at Moffitt there is a Hope Lodge, right next door to the hospital on the campus of the University of South Florida. You can stay there for free if you are seeking treatment from out of the area, the trial peeps just have to do some paperwork for you. There is also my guest room, lol!

Edited to add - the great thing about the trial WC3 linked is that everyone enrolled receives a vaccine drug. In the trial I participated in there were control arms for the two vaccines (you were sorted into each arm based on your histological tissue type - like for an organ transplant), so I never was completely certain that I was receiving the vaccine, but suspected I was based on symptoms after injection and because I have an eagle eye, ha! Fluffqueen, who still posts here occasionally, was about six weeks ahead of me in the trial at the Wake Forest location, and gave me some pointers on what to look for on the injection syringes! Teamwork! At the end of the trial I asked my coordinator which arm I was in and I did indeed receive the GP2 vaccine.

THANK YOU to all of you who have or will participate in clinical trials. Results make a difference for our whole community.

Taco

Angels, Immodium is loperamide. I was prescribed loperamide to take with my Nerlynx. It was recommended that I start with six loperamides every day to control Nerlynx related diarrhea. Some women stay on the loperamide for the entire year they're on Nerlynx. So I'm pretty sure that it's fine to take it every day. I don't know what kind of diet you have, but would it be possible to increase your fiber intake while you're on the Immodium by eating more fruits, veggies, and whole grains? It might help make you more regular. But if you're not in any discomfort having BMs every couple days, then I don't see the problem with that. Your MO may also just put you on a different AI, which may provide relief. I have not heard of diarrhea as a side effect of Arimidex, you must be somehow sensitive to it.

Angelsgal,

PET scans show all sorts of things which aren't cancer. As someone whose PET scan showed a false positive, I think it's important to be skeptical of some findings. I'm glad that yours shows no evidence of cancer.

I used Imodium to help with diarrhea associated with Taxol + Herceptin + Perjeta. If I were going to be leaving the house, I would take it an hour before. I, also, worried about constipation. I took Imodium on work days, but then would take an "Imodium break" on Saturdays, which is when I'd be guaranteed of at least one BM.

https://www.genentech-access.com/patient/brands/perjeta/patient-assistance-tool-page.html?c=hr2-16302d427f6

Co-pay help.

BioOncology Co-pay Card, which may reduce your co-pays for your PERJETA + Herceptin treatment to as little as $5.

Congrats and best wishes. I will be on that same little turbine in a couple of weeks.

Can anyone share their experience with hair regrowth after TCHP? I lost about 90% of my hair, and since my last chemo (6 weeks ago), I have noticed that bit growing. However, I’m still not seeing any new growth. It’s hot & uncomfortable wearing a hat all the time

Paloma after TCHP, finished in February, it’s taking a long time for my hair to come in. It really didn’t start growing for about 8 weeks , and while it is growing everywhere now it’s soooo slow. The sides and top better than the back. I guess we just have to be patient