TRIPLE POSITIVE GROUP
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tresjoile - After 3-1/2 years, I can only taste sweet, salt, sour but cannot differentiate one food from another. I have no sense of smell at all any more but sometimes that's a good thing. I miss roses, gardenias, wisteria... I make my hubby smell the milk before I use it. Food poisoning is a real threat to someone who cannot taste or smell
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Hap B - I hear you but then I read posts like the one someone posted 2 pages back that said "without herceptin,HER2 patients just simply die". OUCH!
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Hi everyone its been a couple months since I have been on here but am glad I stopped by to see what is happening! Its good to read everyones posts and know I am not alone and am experiencing some of the same things as you other gals. Coach Vicky and Special K how great that you 2 got to meet and you both look great. I have a question, does running the herceptin slower make it easier? I started taking anastrozole two weeks ago with the herceptin and I am struggling. Mostly with body aches. Any input is appreciated. Stay strong Ladies!
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tld-I iced my fingers and toes for nail protection. I did the same thin special k did for neuropathy. My main problem was my hands and feet were constantly ice cold. My husband would put hot water bottles and heating pads in the bed for me cuz they just wouldn't warm up. During infusion, I used zipper insulated lunch bags with frozen peas or ziploc ice bags. None of them matched. It was quite a site. My nails were good until herceptin when they got so thin they were like baby nails and painful. I couldn't do anything.
Specialk-I'll be in Bradenton for a week for a family vacay in June. Will it rain all week? I'm ok with hot. We have pools
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blown away I'm sorry it didn't come back, that stinks...
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blownaway - just as there are some who tolerate Herceptin without a drop in LVEF, many are like me and have a slight drop that didn’t prevent treatment and returned to normal after treatment, and then there are some like you and hap who have issues early on. It’s unfortunate for some that one treatment begets another, I wish that had not happened.
fluff - June is a might rain, might not month in FL. The good news is that showers are usually in the afternoon, as the humidity builds, and the showers are pretty short. I’m about 45 mins north of Bradenton.
Kimber- how long is your infusion now? I recommend 90 mins, but whether that helps depends on what is causing the pain - the H or the anti-hormonal
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blown away... that was my post and I’m so sorry that it’s coming baok to haunt you ... I didn’t share this one oncologist’s comments to create fear. Please know that she would not be referring to a patient with 1a. she was speaking in the context of a patient like myself, who is 3a...nodes affected. I did not like her flippant remark at that time, but in her miscalculated remark, I think she was trying to make me feel better. I’d had one chemo session with little response. She was trying to suggest that the big gun for me would be Herceptin. So please remember the context of her remark...you are very early stage and Hapb is right on about the stats
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Poseygirl - I'm not much of a worrier about things that can't be helped. I know most HER2's get a lot of comfort in knowing Herceptin is available to them. I'm feeling really stupid for stopping Tamoxifen due to the bone pain. You've given me incentive to start taking it again or at least try another hormone therapy
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HapB - I was just reading over your prior post re Plan F. I'm eligible in July. So my understanding is to go with traditional Medicare A&B and sign on with an insurance company for part D and plan F. I had been researching advantage plans in order to get some dental insurance. What do you do about dental? Do you mind if I ask what your monthly premiums add up to?
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Thanks HapB! My symptoms with heart failure from herceptin were lack of stamina, extreme fatigue, shortness of breath, swollen lower legs.
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I thought radiation was a given with triple positive bc but I guess the tumor being so small it might not be needed. It is very confusing since we all seem to get different treatments somewhat. What is lupron? I never received this?
Well I did receive "the works" I guess and the aftermath is pretty longterm in a lot of different ways. The chock of it all lingers and my body feels so stiff and I am for sure still suffering fatigue. It is hard to know if it is due to treatment or if it is simply due to psychology, depression etc. It is such an ordeal for the body to go threw so I find it very hard to keep motivation up for exercise and other life style changes. I try to walk every day and have started a very easy training program twice a week with a pt. What I am able to do is embarrassing but I guess I got to start somewhere. So impressed by everyone keeping a regular fitness program. I am one that find myself having a really hard time getting started and keeping up. I need to loose weight and start my healthy life somehow.
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Good evenings, ladies. It has been a long day of infusions but I'm at home with an electric blanket. I still have the cold cap on my head for another hour but my head is numb now so it's all good.
I wanted to let you know, unbelievably, that my insurance company decided to approve Perjeta. I started today! So it was an long infusion of Perjeta, short one of Herceptin (since I had it last week), and Taxol. I'll be interested to see what the Perjeta does to me but I'm expecting some major stomach issues, if all what I have read is correct! I've been reading old posts today, and all of you seem knowledgeable. I am so impressed! I'm just so new to all of this and I feel like I have no real idea of what I'm doing. I just follow along with what the oncologist and his team tell me to do. SPECIALK, I was disappointed that the oncologist told me today that he did not want me to use L-glutamine or Biotin. He said, in his research, he can not definitely say that both are okay to use during chemo treatment. So that's a big disappointment. I'm considering going against his advice, which is huge for me because I am rule-follower to the minute detail.
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I begin chemo tomorrow. Spent my day using nervous energy taking a walk, knitting and making blueberry muffins and a chicken casserole for dinner tomorrow evening. My bag is packed, I’m ready to go.
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tld - that is unfortunate about being shut down by your MO on the l-glutamine, here are some citations if you think it might help. Also, a link to foods high in l-glutamine. I didn't cold cap, but did take biotin after chemo was done.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3385273/
https://depts.washington.edu/integonc/clinicians/spc/l-glutamine.shtml#references
https://www.naturalnews.com/031811_glutamine_amino_acids.html
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Hi all and especially tld-
I will be in your shoes tomorrow. First TPH (taxol, perjeta, herceptin), and I am most apprehensive. I did read a chunk of those studies (thanks Special K, especially for the NIH link) and went out and bought L-glutamine, L-carnitine, and methylcobalamin, all of which (in addition to vitamin E, which is in my multi) are highly recommended for use with taxol. At this point I think my MO is a bit rural and stubborn, so I am going to take them anyway. Gasp... I terrified myself by reading too much of the Taxol thread so retreated back here to your fine company.
take care all. Wishing you well, tld, and think of me tomorrow.
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Homemadesalsa,
I'll be thinking of you tomorrow! I actually thought that Taxol was easier than Adriamycin + Cytoxan, but some BC patients have preferred AC to Taxol. So, everyone is different. Take it easy, and I hope your side effects are minimal.
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Hi everybody. I did TCHP and was forbidden to take any supplements other than a standard multivitamin. But I am all for supplements. It's definitely a conundrum. I wish I could help.
On the perjeta, I had a most horrible skin reaction to it. Took steroids to battle it which had there own set of problems and weakened my immune system even more. I'm still dealing with the fallout. Anyway, the chemo is not fun but you deal with it the best you can. You find inner strength you thought you never had. And then it's finally over. I joined a chemo group but it was not active because everyone joined a separate Facebook group. That might be an option. And of course being triple positive has its own set of treatments. I found this thread to be the best place for support and suggestions. Hang in there.
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Homemadesalsa and JStarling, you've got this, my friends! The other ladies on this thread are far more knowledgeable than I about all things chemo-related but I can tell you that the THP today was not bad at all! I just had TH last week and I did feel quite a few side effects but nothing I could not handle. My first treatment was on Tuesday and Friday was my worst day, but even that day was not horrible. I promise that both of you will be in my prayers tomorrow!
Thank you, Suburbs, HapB, and SpecialK, for your thoughts on the supplements! It is certainly something that I am going to have to think about when I'm not so groggy. I truly wish that in 2018, the doctors could be certain of what is helpful and what is not with regard to supplements and cancer!
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Thank you, Posey, for your post. I appreciate where HapB is coming from, but as a legal assistant and someone who has seen tons of medical reports as part of my job, I am concerned that newbies may place too much confidence in unproven alternative therapies. I know of patients in my own Canadian city who sought alternative therapies either here and/or have traveled to the U.S. and elsewhere for alternative treatments costing many thousands of dollars, only to eventually return to hospital in Toronto after a few years with metastases. Hope springs eternal. We are involved in defending one Toronto doctor now who is quite popular for his alternative treatments, yet his stats are skewed and studies are not rigorous and valid. Sad for the patients who could have probably better spent their money, to say nothing of the disappointment! Often they seek legal recourse to damages; however, they have failed to mitigate their loss by signing away various consent forms. Buyer beware, please!
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To all starting their chemo ...
One day you will look back and remember "it wasn't that bad." Really.
I finished 14 August 2017. I remember finishing, feeling accomplished, getting it done. I do know that I had side effects but they are not prevalent in my memory like they once were.
Best wishes, loving prayers to all.
Vicky
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All good thoughts toward people starting their chemo journeys. Coachvicky as always you are a ray of sunshine. I’m sure like many things in life as time goes on you forget the bad stuff. In my head my rads two years agowere NBD—I’m sure at the time they were a little bigger deal but in hindsight just a blip on the radar of my life.
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tld, jstarling, and homemade - sending healing thoughts as you begin your chemo. Coach said it best, you wIll look back and feel you accomplished something significant. Your body does go through a lot but over time things do get better. Hang in there!
Hapb I am so sorry you're having issues with Herceptin again! Thanks for the book and film recommendations. I'm always interested in learning and exploring new ideas
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I saw this earlier and thought I'd post it since Fuhrman's name has been mentioned. . https://sciencebasedmedicine.org/dr-joel-fuhrman-s...
This is another article I read, the woman who it's about also has a blog. It's about a naturopath who left her profession and now works to bring the industry down, basically.
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I don't really know anything about Dr. Furhman. I saw his name here and then I saw the article I posted and thought I'd share. But I can tell you from looking at his website that he's a business and he's trying to make money.
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Look, I never said anything about diet other than it doesn't cure cancer and none of those studies will say they think it does. And all I was pointing out is a doctor you linked sells an iodine test for $131 USD that's scientifically proven not to work. If you want to trust him, that's your business.
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HapB,
I don't think that anyone here is saying that diet and lifestyle changes aren't helpful for maintaining good health. However, I don't blame my cancer on my lifestyle, and there's no guarantee that a healthy diet and lifestyle will prevent recurrence or mets. That doesn't mean that I'm not trying to adopt a better diet and engage in more exercise -- in addition to my breast cancer diagnosis, it's clear that my family is the "stroke family," and I don't want to become increasingly debilitated by strokes like my grandparents did (three out of four eventually died from strokes). Along with my better diet and more exercise, I also take a three-drug cocktail for my hypertension which seems to be helping out. And, I also take my AI (exestamane). It is what it is.
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I'd like you to show me where it's discredited from sites that don't practice alternative medicine. It's run and written by doctors and every claim they make is cited so you don't have to take their word for it.
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Hi, all--hope you are having an up day. I've traveled 6 hours in 2 days for various appointments. I have my treatment plan--Paclitaxel and Herceptin for 12 weeks, Herceptin continuing thereafter every 3 weeks for a year, radiation to follow chemo after a short break, and then an AI (not sure which one yet) either during radiation or right after (the MO and RO have to discuss it at tumor board, and also, they of course want to see how well I do in the 12 weeks before making firm plans). I will go on Tuesdays; I was told I'd probably feel pretty good Tues and Weds, rough on Thurs and Fri, and improve over the weekends. I've gotten lots of literature to read, and I was pleased that the MO wanted my opinion on the proposed treatment. (He concurred that with my case, AC would be a bit much, especially with cardiac considerations). The physical therapist said my range of motion was fantastic--no cording or lymphadema. I do have a small seroma, but the SO took a peek and said it was small and should resolve on its own, but to let her know if it changed at all.
New research on the AI was presented (and they gave me the citations to look over): Possibly 10 years instead of 5, if tolerable. But again, that's several months down the road from now. Nothing has to be decided for sure yet.
HR is still causing "issues," so the marvelous nurse navigator took them to task. (I had provided everything--they wanted more, more, more. I'm like, what, do you want me to lift my shirt?) They wanted "precise" descriptions of when I would have flareups or side effects. I'm not kidding--I got a copy of the forms, and that was the wording. NN wrote, "The patient is taking chemotheraphy, which is inherently *unpredictable*. We cannot predict precisely when or if she may have complications or flareups." I gave her a high 5 today. My only fear now is HR retaliating in some way. Sad. The only thing I did question was I'm listed for FMLA through Feb. 2019, and I hope to be able to return to work FT a few weeks after chemo is done, if all goes well. Of course we don't know ANYthing for sure, but that is the hope. I'm sure the doctor can adjust the paperwork if I am indeed ready to go back FT shortly after chemo.
Take good care of yourselves, always,
Dee
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HapB,
Your study isn't about women who are taking medication to address osteoporosis. My MO said that I need Caltrate because I'm on Prolia. My doctor said that Prolia doesn't work well if you have low blood calcium. The calcium + Vitamin D supplements help me sustain normal blood calcium levels.
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Yes, I am aware of the study in question. But, aren't you on Zometa? The study in question is not about women who are using medication to treat osteoporosis. It's just a study of people more generally.
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