What to do?
I was diagnosed with stage 2b breast cancer, invasive DCIS, lymphnode positive and HER2/nue positive, also with a very rare aggressive form of Breast cancer right after my 33 birthday. SO I had not one but 2 different cancers back in 2005 at 33 years old. I had 2 lumpectomies because the tumor had spiderwebbed out, 16 lypmhnodes removed and I am a grade 2+,3+ on the HER2/Nue. I was given lupron shots to stop my period, I did 6 months of radical A/C chemo then 16 weeks of Taxotere. When they started the Herceptin I ended up having to stop it after the 3rd infusion due to a severe allergic reaction that almost collapsed my lungs. So I am allergic to the anti-body. Then I had 37 - 40 days of radiation. When they stopped the lupron shots I had 2 months between them and starting the tamoxifen. I never got my period back. I have been in menopause for close to 4 years. Then to make matters worse I was told by my OB-GYN that I have one of the HPV viruses that gives me an 80-90% chance of getting cervical cancer. SO I have an extrememly high chance of getting Breast cancer back or some other cancer due to the over expression of the HER2/nue gene. Well 2 weeks ago my pelvic area above my pelvic bone started hurting pretty bad, I thought it was gas but then 2 days ago I think I got my period back pretty heavy, I think it is, after 4 years in menopause. Or may be not. I have been on tamoxifen for 3 years but in induced menopause for almost 4. Has anyone had this happened? Especially having the high chances of recurrence or a new cancer developing and then being allergic to the Herceptin to boot.
Comments
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After the first infusion Itgf said:Just curious
Just curious ... but what was your allergic reaction to herceptin?
hugs.
teena
After the first infusion I started wheezing, then by the 3rd I ended up being hospitalized because I couldn't breathe. When they CAT scanned my lungs, it showed that I had dark spots over 85% of them. and they were getting ready to collapse.0 -
I have notkartiae said:After the first infusion I
After the first infusion I started wheezing, then by the 3rd I ended up being hospitalized because I couldn't breathe. When they CAT scanned my lungs, it showed that I had dark spots over 85% of them. and they were getting ready to collapse.
I have not experience any of that but wanted to stop by and offer my support and good wishes. I'll say a prayer for you.
Tj0 -
To Tjtjhay said:I have not
I have not experience any of that but wanted to stop by and offer my support and good wishes. I'll say a prayer for you.
Tj
You amaze me, Tj. While undergoing your own treatment, you consistently offer your support & encouragement to others. No matter what.
You are of a sweet & giving soul.
Kind regards, Susan0 -
Thank you for your supportpeggy65 said:although i haven't had this
although i haven't had this situation, i want to offer you my love and support. i don't blame you for being overwhelmed, i would be to. stay in the moment and try to be peaceful. love, peggy
Thank you for your support. They say God doesn't give you what you can't handle and I use to think what did I do to deserve everything, but it has only made me a stronger person. At 20 years of age I started having surgery after surgery on all parts of my body by the time I was going on 33 I had 12 different surgeries (stomach, throat, hands, wrists, elbows, knees), 2 weeks after my 33rd birthday I was diagnosed with not 1 but 2 different forms of BC, lymphnode positive and HER2/nue positive. Then 5 surgeries with that, then being allergic to the Herceptin and having my chances of a recurrence more than double. I went through the cancer alone. I drove myself and hour and a half to and from chemo, radiation etc. I lived in my car for 3 monthsduring the 9 months of radical treatment. Anything that could go wrong went wrong. I had yet another knee surgery last year. so that makes #18 and I am 36 going on 37. I quit my job and just up and moved from CT down here to Florida to be with my sister. I had no one in the state of CT left. My family is all in different states and What friends I thought I had walked away when I was told my chances of surviving was less than 50%. SO I was left alone. I cried harder when I was told I was being put into menopause before chemo and I couldn't have kids. Than when I was told I had cancer. If it wasn't for my cat going after my right breast, I wouldn't have found the lump as soon as I had. I have been in Menopause for going on 4 years, severe hot flashes like I am going to spontaneously combust, mood swings like you wouldn't believe. I have been on tamoxifen for 3 years and my OB-GYN told me last year I have the HPV that causes cervical cancer, and having the issue with the Herceptin, it's really not good. Well a few days ago I started menstruating for the first time in 4 years, so I am freaked out. A side effect of Tamoxifen is Uterine Cancer. I have an OB-GYN doctors appt tomorrow to find out what is going on. One big thing I have issues with is My insurance will not cover pre-existing conditions for the next year, so I can't afford to see an oncologist every 2 months like I am suppose to because they want $400.00 a visit. I will not say Woa-is-me because even though I have been through so much and I probably will go through more. There are so many more people out there who are worse off than me. I keep going because I keep my attitude positive and I thank God for yesterday, I live for today and I pray for tomorrow. I am here for anyone who needs to talk about their cancer, or anything else because I do know that unless you go through it you have no idea what it does to you and anyone who has never been through ulcers in the mouth, losing all your hair, weekness, pain and all the other mental and physical effects. You all are in my thoughts and prayers.0 -
Glad you'll see you OB/GYNE tomorrow...kartiae said:Thank you for your support
Thank you for your support. They say God doesn't give you what you can't handle and I use to think what did I do to deserve everything, but it has only made me a stronger person. At 20 years of age I started having surgery after surgery on all parts of my body by the time I was going on 33 I had 12 different surgeries (stomach, throat, hands, wrists, elbows, knees), 2 weeks after my 33rd birthday I was diagnosed with not 1 but 2 different forms of BC, lymphnode positive and HER2/nue positive. Then 5 surgeries with that, then being allergic to the Herceptin and having my chances of a recurrence more than double. I went through the cancer alone. I drove myself and hour and a half to and from chemo, radiation etc. I lived in my car for 3 monthsduring the 9 months of radical treatment. Anything that could go wrong went wrong. I had yet another knee surgery last year. so that makes #18 and I am 36 going on 37. I quit my job and just up and moved from CT down here to Florida to be with my sister. I had no one in the state of CT left. My family is all in different states and What friends I thought I had walked away when I was told my chances of surviving was less than 50%. SO I was left alone. I cried harder when I was told I was being put into menopause before chemo and I couldn't have kids. Than when I was told I had cancer. If it wasn't for my cat going after my right breast, I wouldn't have found the lump as soon as I had. I have been in Menopause for going on 4 years, severe hot flashes like I am going to spontaneously combust, mood swings like you wouldn't believe. I have been on tamoxifen for 3 years and my OB-GYN told me last year I have the HPV that causes cervical cancer, and having the issue with the Herceptin, it's really not good. Well a few days ago I started menstruating for the first time in 4 years, so I am freaked out. A side effect of Tamoxifen is Uterine Cancer. I have an OB-GYN doctors appt tomorrow to find out what is going on. One big thing I have issues with is My insurance will not cover pre-existing conditions for the next year, so I can't afford to see an oncologist every 2 months like I am suppose to because they want $400.00 a visit. I will not say Woa-is-me because even though I have been through so much and I probably will go through more. There are so many more people out there who are worse off than me. I keep going because I keep my attitude positive and I thank God for yesterday, I live for today and I pray for tomorrow. I am here for anyone who needs to talk about their cancer, or anything else because I do know that unless you go through it you have no idea what it does to you and anyone who has never been through ulcers in the mouth, losing all your hair, weekness, pain and all the other mental and physical effects. You all are in my thoughts and prayers.
... because that is exactly what I was going to suggest before your most recent post appeared. After several years of chemically-induced menopause & Tamoxifen - I, too, thought I had gotten a "period"... Called my onc - who had constantly reminded me to do so (still does) if anything like this ever happened. He instructed me to contact my ob/gyne immediately. So, that's what I did. She "scraped out" a sample, which was sent for testing. Also ordered a pelvic ultrasound. All turned out to be "nothing" - thank goodness. My ob/gyne described it as not a real "period" at all - but, the body shedding "old cobwebs"! I will hope this will be so for you, too.
Kind regards, Susan0 -
Thank you so much for makingChristmas Girl said:Glad you'll see you OB/GYNE tomorrow...
... because that is exactly what I was going to suggest before your most recent post appeared. After several years of chemically-induced menopause & Tamoxifen - I, too, thought I had gotten a "period"... Called my onc - who had constantly reminded me to do so (still does) if anything like this ever happened. He instructed me to contact my ob/gyne immediately. So, that's what I did. She "scraped out" a sample, which was sent for testing. Also ordered a pelvic ultrasound. All turned out to be "nothing" - thank goodness. My ob/gyne described it as not a real "period" at all - but, the body shedding "old cobwebs"! I will hope this will be so for you, too.
Kind regards, Susan
Thank you so much for making me feel so not alone with this. I have searched the web to try and figure this out and why I am profusly flowing. The only thing that really freaks me out is my recurrence or new cancer percentage rate and of course my luck..LOL..Oh wait....what luck? I just keep smiling and taking it day by day. Like Dori in Finding Nemo. Instead of saying "just keep swimming", I am always saying "Just keep goin..just keep goin"0 -
tomorrowkartiae said:Thank you so much for making
Thank you so much for making me feel so not alone with this. I have searched the web to try and figure this out and why I am profusly flowing. The only thing that really freaks me out is my recurrence or new cancer percentage rate and of course my luck..LOL..Oh wait....what luck? I just keep smiling and taking it day by day. Like Dori in Finding Nemo. Instead of saying "just keep swimming", I am always saying "Just keep goin..just keep goin"
I will be thinking of you tomorrow. I hope it is nothing and please let us know when you find out anything. We are all caring people and only want the best for our friends.
Margo0 -
I'll chime in with Margo here...tommaseena said:tomorrow
I will be thinking of you tomorrow. I hope it is nothing and please let us know when you find out anything. We are all caring people and only want the best for our friends.
Margo
kartiae - Hoping for the best possible outcome for you.
Kind regards, Susan0 -
You definitely need to go to
You definitely need to go to your OB GYN regarding the bleeding. It could be your period but it can be a sign of uterine cancer. There is a chance that woman that are on Tamoxifen can develop this. Best to get it checked out. You don't want to think that this is just a start up of your periods and find out later it was something bad. Be safe not sorry. One good thing about the HPV is that you and your gyn are aware of it and will be diligent in keeping an eye on it.0 -
Glad you found us and sorry
Glad you found us and sorry you're having such a hard time. Not fair that we have to fight this beast and have to worry about insurance coverage to boot. You should contact your local ACS office, because they do offer help and support. You may be able to apply for charity care at your hospital so that at least your doctor visits will be covered until your insurance takes effect with pre=existing conditions. Keep us posted and sending you cyber hugs. I'm also curious as to what radical a/c is. I had 8 rounds of a/c every 3 weeks. Hugs, Lili0 -
Well. I head to my OB-GYN indjteach said:Hi Kartiae,
I don't have
Hi Kartiae,
I don't have much to add, I just wanted you to know that you will be in my thoughts and prayers. Let us know what happens tomorrow.
Love and Gentle Hugs,
Donna
Well. I head to my OB-GYN in 20 minutes, wish me luck! But just like I tell my family and friends, if I get it back, I will just have to beat it again, cuz I am not ready to go. I just moved here to Florida and I love it and I consider each day a gift and not a given right. Thats from a Nickelback Song called "If today was your last day" I love that song, you all should check it out!..well I will let you all know what happens..Thanks again.
Kate0 -
They considered my chemoEil4186 said:Just curious, what is
Just curious, what is radical AC? How is it different from regular AC?
They considered my chemo radical because I had to do it twice as long and with the strongest doeses they can give of the A/C due to the fact I had Invasive DCIS, HER2/nue positive and I also had a second form of very aggressive rare cancer that I guess they have only found in about 3% of breast cancer. So my ONC called it radical chemo..Who knows? Oh Well, the only thing that matters is we're all still here and loving life.0 -
I am Backkartiae said:Well. I head to my OB-GYN in
Well. I head to my OB-GYN in 20 minutes, wish me luck! But just like I tell my family and friends, if I get it back, I will just have to beat it again, cuz I am not ready to go. I just moved here to Florida and I love it and I consider each day a gift and not a given right. Thats from a Nickelback Song called "If today was your last day" I love that song, you all should check it out!..well I will let you all know what happens..Thanks again.
Kate
Well I just got back from my OB-GYN, he took blood and did a pap and he is worried so I have to go for an ultrasound and a uterus scraping next wednesday. He said he is worried due to the fact I am on tamoxifen and I do have a very high chance of a recurrence or new cancer. SO its a waiting game yet again.0 -
I had spotting while onkartiae said:I am Back
Well I just got back from my OB-GYN, he took blood and did a pap and he is worried so I have to go for an ultrasound and a uterus scraping next wednesday. He said he is worried due to the fact I am on tamoxifen and I do have a very high chance of a recurrence or new cancer. SO its a waiting game yet again.
I had spotting while on Tamoxifen and because of family history my oncologist switched my medication and took blood sample to make sure I was in menopause. I was so he sent me to OB-GYN and to make a long story short ended up with a D&C (she did a hysteroscopy at the same time which is just putting a camera up to get a better look). I had uterine polyps. I had everything you had done first plus a biopsy. They have to take one step at a time.0 -
Thanks for making me feel aMarcia527 said:I had spotting while on
I had spotting while on Tamoxifen and because of family history my oncologist switched my medication and took blood sample to make sure I was in menopause. I was so he sent me to OB-GYN and to make a long story short ended up with a D&C (she did a hysteroscopy at the same time which is just putting a camera up to get a better look). I had uterine polyps. I had everything you had done first plus a biopsy. They have to take one step at a time.
Thanks for making me feel a little better, but its funny, I am not so worried, I just keep telling myself that whatever it is, there is no use in working myself up over it. And there is not much I can do until we figure out what the problem is. ANd if it is my period after 3 1/2 years then it has an upside, it means I can have kids, not that I want any now. I have convinced myself I don't want any since I was put in menopause. I like my life the way it is. well at least most of it.0 -
Kate,kartiae said:Thanks for making me feel a
Thanks for making me feel a little better, but its funny, I am not so worried, I just keep telling myself that whatever it is, there is no use in working myself up over it. And there is not much I can do until we figure out what the problem is. ANd if it is my period after 3 1/2 years then it has an upside, it means I can have kids, not that I want any now. I have convinced myself I don't want any since I was put in menopause. I like my life the way it is. well at least most of it.
Sorry you are going through all this. It seems that you have had your share of health issues since you were very young. I haven't heard of radical AC chemotherapy either. I did six rounds of TAC, and it wasn't easy. I sympathize with you.
Are you still bleeding? We will be waiting for your results next Wednesday. I hope it is nothing.
Mimi0
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