TRIPLE POSITIVE GROUP
Comments
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WC3 thanks for the link. It is in Florida, I wish it was happening anywhere in the northeast
SpecialK, how frequent did you have to go for the boosters? I’m considering signing up for this clinical trial
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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
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I have had 2 lumpectomy surgeries and still have a little DCIS, soooo....
I was just wondering if any Triple+ Pink Sisters have had the Oncoplastic Reduction (lumpectomy)
with IORT, there are studies that say this is an option instead of Rads everyday for 4 weeks...
(Intraoperative radiation therapy (a way to give radiation therapy. During surgery to remove breast cancer, radiation is given as a single dose directly to the area where the cancer used to be).
Just looking for real life experiences, the good and the bad.
Tank you in advance.
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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
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Thanks for re-posting those websites, Special.
Ladies, this is our life and the AIs keep us alive. I fully understand the struggles with AIs. If your Oncologist (or anyone on your team) says that the manufacturer does NOT make a difference, ask this: When you were on an AI which manufacturer did you have the most success with? The answer I always got was that the person had never taken an AI. So I would relate that between the two of us, I was the expert and wanted X manufacturer. I got what I wanted. When the SEs of Arimidex (third generic and the brand name) affected my quality of life, my Oncologist switched me to Aromasin. I am doing well with Aromasin.
Stay in the fight!
Vicky
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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.
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For those concerned about bone density loss while on AIs.....
According to my baseline dexa scan, I was borderline osteopenic when I started hormonal therapy and ovulation suppression. After two years of Aromasin + Zoladex, my dexa scan showed that I had full-blown osteoporosis and was at high risk for a fracture. My MO prescribed Fosamax and then Prolia (when she figured out how to get my insurance to pay for it). Yesterday, I had my biennial dexa scan -- I have graduated from osteoporosis to osteopenia! So, yes, you can recover bone density after loss. Hopefully, we'll see even more improvement after another two years.
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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.
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WC3 yes I sent the link to my doctor last night and he responded immediately. He says the vaccines look interesting and that he would contact the coordinator on my behalf. Florida is recruiting right now and Washington hasn’t started recruiting.Thanks again for sharing❤️
SpecialK I asked how often you went for the boosters after the monthly injection?
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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.
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SpecialK, thanks for the detailed breakdown of how it went with your participation. Helps me know what I’m working with.
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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.
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SpecialK, thank you for the pointers and information, you are a blessing to this group!
Living with your college aged son must have been fun and hilarious! Those moments are indelible. Thanks for offering your guest room too...lol. I will keep you posted as I go along. I intend sending my MO an email today to check if orwhen he intends conctacting the coordinator. For some weird reason, I am excited about this and looking forward to it. Fingers crossed.
Happy Sunday everybody❤️
Xoxo
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THANK YOU to all of you who have or will participate in clinical trials. Results make a difference for our whole community.
Taco
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Hello my friends AngelsGal here with my PET SCAN results.
I know it has been a while since I have posted, results are No cancer present. Interesting information though. My Oncologist says that the lung nodules did some wierd things over the last 6 months...the minuscule ones got a fraction larger still less that 1 mm, and the large ones got smaller. Because I have asthma he believes that the nodules are not changing as a result of cancer but due to inflammation due to an upper respiratory infection I had 2 weeks before the test.
Has anyone had anything like this?
I am only on the Arimidex now and have to ask about a frustrating and sometimes embarrassing side effect that this working girl is finding very upsetting. I am having to wear adult Depends and take Immodium and wonder if it is OK to take it everyday or even every other day. If I stay on the immodium I have bowel movements only every couple of days, If I go off it I have diarriah and it comes without warning and persistently.
I am working and it is very difficult to navigate.
AngelsGal57
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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.
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Hapa,
Thanks for the assurance that I am ok taking the Immodium so frequently. I do eat a good diet. being diabetic type 2 I eat a low Carb diet, assorted salads for lunch and I do take a fiber supplement that I mix in water in the mornings that has psyllium in it.It seems everything is off balance. My pet scan last week didnt show any blockages. I hope I can figure it out.
AngelsGal
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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.
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4 rounds of TCHP down - 2 to go. I've been trudging along fairly well (or I thought so). Until the last few days - my new SE is incontinence. Anyone else experience this? I haven't seen much posted about this lovely SE so I'm guessing it is one of the more unique ones?? I hope it is temporary but am feeling rather defeated and upset at this moment. I see NP tomorrow.
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Co-pay help.
BioOncology Co-pay Card, which may reduce your co-pays for your PERJETA + Herceptin treatment to as little as $5.
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Well the engines have been cut and I'm gliding. I'm done with the infusion part of active treatment. My nose is still running and I've never been more happy to have a runny nose because it means the Herceptin is still in my system, but when it's gone I will just have the Tamoxifen or AIs. Here's hoping that little ram air turbine can keep me aloft forever.
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Congrats and best wishes. I will be on that same little turbine in a couple of weeks.
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WC3--congrats on having the H/P behind you!!! I was *so* anxious to get to my final infusion. Took myself for a weekend away immediately and then went on a nice vacation with my family a week after that. It really is something to celebrate!! Heads up that the runny nose will continue for a while--I asked that question on one of these threads and was told 4-6 months. I got some Flonase about a month ago based on someone's recommendation. I think it did help some, although I developed a cough which I read can be a SE. I'm still using it a few days a week--just one spray (my last H was May 17th).
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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
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WC3, congrats for having the last HP infusion.
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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
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Paloma, it took forever for my hair to start coming back. Are you taking progress pics? They are helpful when the hair starts growing back but not so well that it's easily noticeable. My hair actually started falling out again after I finished TCHP before it started growing back. I had a few wispy strands on top but they all came out a few weeks after I finished. I still had a ring of hair around the edge, which looked worse than being bald IMO, but the new growth crept slowly up over my scalp from those edges. I took biotin which seemed to increase the growth rate but stopped a few months ago because my leg hair was growing so fast. I think it took about 10 weeks for the regrowth to start and about four months before I had full scalp coverage and could ditch the hats.
WC3 - congrats on being done!
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Paloma, it took about five-6 months out from chemo before I felt comfortable without a hat or wig, it is back and thick now except for the front, but I’ll take a receding hairline over bald any day!
I’ve been taking anastrozale for 4 months now and luckily my joints/bones are only a little creaky in the morning. What is more annoying is difficulty sleeping (I now take it early in the day) and low level headaches. Not awful like migraines just there most afternoons. I had a bone scan which showed worsening osteoporosis so in a week I have a Zometa infusion. Anything advice from those who’ve had headaches and Zometa?
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I’m at 5 months out from TCHP and take the hat off sometimes, still not really comfortable, hopefully in another month I can, the hair grows so slowly
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Congrats WC3! Hope you are in good spirits. For me, finishing treatment was very unsettling.
Hair: in my case, I had my last chemo in mid-March (Taxotere, 100% bald and without eyelashes or eyebrows), and I stopped wearing hats/scarves by the end of June. Coloring it helped. Somehow the light brown (or dark blonde) color made it look a lot thicker than when it was all patchy in brown/gray.
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