TRIPLE POSITIVE GROUP
Comments
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Question...
I'm doing the rads and following Omaz's and others' advice. Cotton tee under my bra, miaderm etc. After 8 rads I'm lookin a tiny bit tan.
Wtf am I supposed to with the cornstarch? If I put it on close to the Miaderm ...which I do regularly.. I feel and look like a messed up craft project with globs of moist cornstarch.
Should I skip the Miaderm at some point in favor of the cornstarch?0 -
When younger, I didn't ask questions. I thought what do I know, I'm not a doctor. After a few big errors doctors made, I learned fast that they don't know everything. They are human. Most primary doctors know little about cancer. One doctor never heard of herceptin or knew what her2+ cancers are. They just send you to a specialist. My now cardio doctor never heard of Herceptin before I brought it up.
Most of my cancer doctors didn't take offense that I ask questions. They thought it was good I was proactive and somewhat informed. At the same time a few of the doctors might be a little wearied by all my concerns and questions. In the end we are our best advocate and have to live with the decisions made.
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ashla - I think the cornstarch is to help where there is skin skin contact - I didn't end up using it. Where did they suggest that you use it?0
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Well ladies...I got my second MO consult today.....and I am SO impressed with her! She really listened to my concerns about the HER2 factor and said she is concerned about that and the fact that the mammogram less than two months after the clear one was so evidently changed. I was thinking that since she is also a Kaiser provider that she might just back up the first MO who basically said "no" to Herceptin alone and no need for chemo so nothing but Arimadex. I didn't even realize how anxious I was about this until I got her assurance that she looks at each.patient as a unique individual and that although "protocol" for such a small tumor would be to forgo chemo ....she doesn't always follow protocol, she takes the whole picture. She's going to review and speak to the pathologist about the specimen that was removed during the biopsy and put a request in for the Oncotype company about the makeup of my pathology and then get back to me. She will even consider Herceptin w/o chemo if that appears to be a viable option. So am I nuts???....going from a MO who says no chemo to one that says maybe and maybe Herceptin alone and I'm HAPPY! Even my DH says he has more confidence in this new MO!
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Chachamom, looks like you found your new MO
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My insurance company picks my provider....which means, I can be buzzing along getting tx for almost 10 years from my awesome Endo, and BAM, insurance contacts me and says...meh, we have openings on base...so we're changing your doc...we don't really care about continuity of care...
This is what happens when government gets involved in the health care business. My choices fade to nothing...costs are still ridiculous, bureaucrats assign medical care and often deny routine tests.
Sad.
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Ton lee..
You have government provided health care?
Why don't you purchase private insurance? Mine costs me $12,000 dollars a year ...just for me....and I have a $4,000 deductible! I think you'll find the same difficulties with private insurance only it's bean counting beaurocrats making the decisions.
Health care and its delivery are very complex economic and ethical matters throughout the world There are no simple answers.0 -
Chachamom, you KNOW I know what you are going through, and no I do NOT think you are nuts!!!! Our position with a tiny HER2+ tumor is very difficult indeed. Your gut is telling you this is the right thing for you. I had one onc say absolutely no chemo, only Tamoxifen. He even told me insurance may deny it and when we offered to pay out of pocket (like we could, LOL) if needed, he still refused. 2nd onc said absoutely must do chemo and Herceptin. 3rd said, will do Herceptin only if that is what I felt comfortable with, he respected the controversy. 4th onc (who specializes in tiny her2+ cancers at MD Anderson) strongly recommended chemo and Herceptin. Flew back home and stuck with the 3rd onc who agreed with the MDA recommendation and is now doing chemo/herceptin for me.
So yeah, I hear ya, and no, you are not crazy for feeling relief at finding an onc who you feel comfortable with! Oh - FYI, we tried the oncotype DX on mine - but it came back as too small an area of tissue to test. So don't freak out if that happens. A decision can certainly still be made without it.
TonLee, that SUCKS.
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ashla you purchased that private insurance before you were diagnosed I assume. Once you are diagnosed insurance companies won't let you purchase private insurance… basically you are insurable*. So unless you get it through your job or your spouses job forget about getting it on your own.
*Some states have a high risk pool but this is very $$ and it isn't meant to be permanent. There is a lifetime cap. This is one of the things Obamacare will remedy in 2013.
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Does anyone know if Melatonin can be taken for sleep with Tamoxifen? I am 6 weeks PFC and on Herceptin alone and Tamoxifen now and if I don't get a good night's sleep soon I may end up in the loony bin! LOL
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Hi Ladies, this is for those of you who are post reatment, I would say at least a year or close to out. I found this water called BLK water it is alkaline water infused with Fulvic acid. I started drinking it 1 a day bout 6 weeks ago and it has helped reduce the water retention from treatment immensely! I was taking a diuretic during and after ttreatment but this has helped me shed 10 lbs of fluid and keep it off. Fluid retention was my lingering SE and driving me crazy! I have lost 2 inches around the stomach! Whoo Hoo!! Fulvic acid is used to help remove any heavy metals from you body and think this has really helped removed the lingering chemo that was causing the fluid retention. I would recommend it to anyone in ttreatment or recently post treatment because you want the chemo in your system to kill off any lingering cells but anyone way past ttreatment this would be good to help detox.
So far doing good, I actually signed up for surfing lessons, and to think last year this time I was having my last TCH and could not walk for weeks. Hang in there and you will get though this.
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Moonflower: yes I think I found her! (she's also the only female oncologist in this facility and says she has a different perspective than most men...)
Dancetrancer: thanks for your insight and support! I am so relieved that I'm heading in the right direction with my new MO. She also has a lot of respect for my BS so I think they will work well together regardless of the final plan. Thanks for the tip on the oncotype too! You ladies are all awesome!0 -
Ashla,
No I don't have "government" health care. (Medicaid)
I have Insurance that as far as I know is only insurance for active military personnel, veterans, some gov employees and their families.
We retired after 25 years of military service.
We pay an annual policy amount, then co-pays, deductibles, etc...just like normal insurance ....the only difference is, the military has its own hospitals... so if you live close to one, the policy is you must be treated at it if there is space available.
The benefit is there are no co-pays at the military hospital, free prescription ("free" being a relative term...we worked, moved, sacrificed a lot in that time, and my husband bled to earn the benefit, so I don't call it "free," but I digress). The negative is often tx is "iffy" (I have had some really horrible experiences and some really fantastic ones!) with lots of young trainees, and military policy. What is acceptable and common practice changes within the facility about every couple years when there is a new commander and they want to make their mark. So what is done today...is different in two years....
There is almost never space available at some military hospitals for veterans because active duty military get priority (and is as it should be)....so we take our insurance and go off base to civilian in network providers.
The PROBLEM is....if there is a slow month, or period of time on base, or a new commander, or (insert any reason here they want) they interrupt your off base care and tell you to come on base to a new Dr that doesn't know you, or your history.....because HEY WE HAVE A SPACE AND YOU NEED TO FILL IT!
Literally, I can see 15 Drs in 12 months, and not a single one of them be the same twice. Which means I am constantly explaining, catching up, defending and fighting for tx that works for me. Imagine for example, see a Dr one week that refuses to do Oophs at all...just refuses....then the next week you see another Dr who says, hey, no problem, let's do it!
It's not just healthcare...it's MILITARY healthcare...so multiple the policy obstacles by two. For instance, even though PET is generally common practice for Stage 3ers....the military at our facility says, MEH....not for us. And that is that. My insurance isn't going to pay for me to go off base and get one because they have to PAY for it...so they say...well the military says it's not necessary....soo...nope.
I will say the Cancer Center is generally not this way (multiple docs) because they don't have enough staff and understand continuity of care .... so my Onc stayed my Onc, and RO my RO. but I will tell you last time I was in the CC... a Senior Airman, all of about 20 years old, lectured me for 15 minutes on why he wasn't going to allow me to remove my boots to be weighed...that it was unsanitary...and military policy, blah blah blah. And you know what I could do about it? Nothing. Because if I don't get treated there, I don't get treated without hurting my family financially.
You know how the post office has 5 windows but only 1 is ever opened? And the people can be rude and slow because they can't be fired? Imagine if they were providing you with cancer care. Lots of shrugs and ... well that's how we do it...suck it up..or go somewhere else and mortgage your house.
There are other policy options on our insurance that would enable me to go off base and not be treated on base, but because we live so close to a military hospital in some instances I would have to pay up to 50% of tx! That would be fine if I didn't have cancer.
I am thankful for my medical tx. My family has earned every bit of it. And it didn't come cheap. Really. It can just be frustrating because the gov. tells our Insurance Co. how to do business...because the gov (the military part of it) is paying part of it....like employers pay part of insurance for people who work for them...but with the military, they don't just pay, they want a SAY. And because they have hospitals (which cut the insurance company's cost) they get it.
Ok. I'm done whining. I'm sorry. I know there are people who have no health insurance at all. I'm grateful, and will try to stop being such a baby about it.
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Oh TonLee! You are not whining and you have a right to be disgruntled! Our military SHOULD be getting the best care available! The sacrifice you and others have made for all Americans deserves the highest respect and I thank you!
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I lost my original post!!! How frustrating!
TL: I am so sorry you are not getting the care that you deserve. I have the highest respect for all our military and the sacrifices made for all Americans. You should be getting the BEST care available!
You're not whining! God bless you!0 -
TonLee - uggghhhhh!!!! Having to switch doctors that much and jump through those loopholes would drive me batty! I can see totally where you are coming from - thankful, but frustrated at the same time. You are not being a baby about it...whine away!0
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Finished Taxol/Her #6. I'm 1/2 way finished! But.....I'm anemic. Nurse said to start eating iron rich foods. Yeah I can have my chicken livers and cholesterol be damned. LOL
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Saw my new MO today and he's wonderful! What a breath of fresh air after more than a year with an MO who spent next to no time with me. Finally I feel like I can have a two-way conversation. So, for what it's worth these were some of his answers to my questions:
1. Tamoxifen and severe joint pain-he said it's absolutely related and he sees it a lot. He wants me to try splitting the dose and taking it twice daily to see if it reduces the SEs. If not, he would consider reducing it from 20 mg to 10 mg. He told me that even with joint pain as severe as mine he is hopeful that it will improve over time and has seen it take more than a year for the body to adjust to SEs (I've been on it 8 months). He did say that Tamox is crucial and that in his opinion it's even more important for me than chemo.
2. Sexual SEs: He does not object to the use of vagifem used locally on a short term basis and thinks it can help restore vaginal tissue but said that he would suggest not using the normal dose prescribed by the Gyn and would instead suggest using the lowest possible amount to get improvement. He thinks I should try it since I've done everything else without relief because he agrees that it's a huge quality of life issue.
3. Recurrence risk based upon my pathology and treatment: He said that in general he would predict a 5% risk of local recurrence (since I had lumpectomy/chemo/rads and Herceptin) and a 15% risk of mets. He mentioned several times that the Her2+ part of the diagnosis is what worries him (yeah, me too:) He said that in his experience most young women will have a recurrence within 3 years if it's going to happen while those who are older can recur later. He said he believes the difference is likely related to hormone levels.
4. Monitoring: he said he'll continue to do bloodwork but does not put much stock in tumor markers unless they spike drastically AND there is a trend over time. He noted that in at least 50% of the recurrences he's seen the tumor markers remained normal. In fact, he mentioned that the person who invented the test no longer uses it because it's so unreliable. He'll continue seeing me every 3 months for the first year post-treatment. He also said he suggests an MRI alternating with mammogram because my mammo specifically states "dense breast tissue"-according to him this is the way radiologists cover themselves from liability with hard to read mammos. He cautioned me that it's a double edged sword, however, because the MRI may result in false positives and unnecessary biopsies (but he still thinks I need it based on my dense breast tissue).
I think I got more information in one visit from him that I did in a year with the previous MO. He was very professional and never mentioned or alluded to his colleague (in the same practice) that I fired. He just treated me as if I'd always been his patient. I feel like I finally have a strong ally in my treatment-Hooray!
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Dragonfly ---- im so happy for you that you like your new MO. Did he say anything about whether ooph would decrease chance of recurrence? I have been given the same stats as you, but I don't like the 15%.
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dragonfly - so happy for you!!!! What an awesome report, thank you for sharing the details. How wonderful you have found an onc that you love!!! He sounds fantastic!0
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hi ladies! how is everyone
just catching up on everyone's posts
dragonfly - glad you found a new MO - what is your ER percentage? wondering since your MO believes tamox is so vital - I am 95% ER positive
shore - I changed MO's mid herceptin. I just felt like I was "pulling" the info out of her every time I went in for my appts. I stayed in the same cancer ctr and requsted another MO from the breast onc nurse. The nurse said this is not uncommon and sometimes its just finding the right personality fit for you . I made sure I had at least 2 of my next herceptin treatments scheduled tho. Often times the MO will put in the rx a few months out
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Good info dragonfly.
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shore1 No, he didn't seem to be in favor of an ooph and didn't give me any specific stats related to what difference the ooph would make. I still haven't had a period since March 2011 and he did say that he believes I'll eventually come out of menopause since I'm only 42- but he told me not to worry about it. He admitted that there are mixed opinions about this issue but his opinion is that I don't need to do anything beyond Tamoxifen to address the hormones.
My Gyn was also against the ooph for me because she believes at my age that the benefit of keeping my ovaries to bone and heart health outweighs the risk. I'm okay with that and I just hope I start tolerating Tamox a bit better. 15% is higher than I'd like but I tend to be conservative when it comes to surgery .
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Rozem I was 90% ER and PR positive. It sounds like you are in the same boat. I think I've been focused on the Her2+ piece of my diagnosis for so long that I tend to overlook the ER/PR part and forget that it's equally dangerous.0
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Dragonfly, glad you found an onc you are comfortable with. Have you seen the thread, cure for painful intercourse, I think that's Wat it is called. I need to learn to link! Just FYI.
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moonflwr912 Thanks and yes, I've been to that thread and I've already got the scream cream:) It's more effective that over-the-counter remedies but I still have pain...0
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Hi Moonflower google multi gyn. I has the same problem and daily use pretty much took care of the problem.
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I finally switching to tamoxifen this week, beside joint pain did anyone have any SE I can look forward to? Weight gain, nausea, etc? Thanks for sharing!
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Nmoss, there's a good thread "newbies on tamoxifen." I started it in february and only some joint pain, but not too bad. More annoying g are the hot flashes - and I mean sweating like a pig. No weight gain at all, but that could be because im exercising a lot. I also think it causes insomnia, but I don't know for sure if tamoxifen is to blame for my sleep problems. Sweating at night doesn't help. I hope it goes well for you!
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Rozem, good you were able to do that. My center has fellow see patients which is what I don't like, even if he wasn't such a jerk, so for that reason I don't think asking for another MO will help.
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