Dis Breast Cancer Survivors Part III - GAGWTA!

[snappy]

I wanted to post that I took Tamoxiffen for 5 years after diagnosis. I tested as estrogen positive, so it was recommended.

I had no issues other than I went directly into menopause, which at age 50 plus, I was probably going to get there quick anyway but I had not had any of the typical signs of beginning menopuse.

I too did a lot of reserach but my case is different since I did have cancer.

Also, I starting on Synthroid around the time I was diagnosed with breast cancer. I had lumps or nodules in the thyroid since at least when they were first detected in 1991. Had them biopsied about three times over the years and no cancer was detected. In 2004, I was diagnosed as hypothyroid and started on the Syntroid.

I am taking 100 MCG a day, but started lower, and was titrated to that point. I am seen by a endocrinologist every 4-6 months and have bllod work to monitor the thyroid. My thyroid gets an ultrasound once a year, and the Synthroid seemingly helped them to shrink.

Hope this info is helpful.

If it were my decision to make, I would take the Tamoxiffen. There are risks, but they can be managed. I read a lot about the preventative studies with this drug held years ago and that helped me feel better taking it.

If I had started with bad symptoms I am not sure what I would have done. I think Merry was also on it but had to get off of it.

I am not sure why the side effects are worse in some people rather than others. Unfortuantely, you don't know how you will react until you try it.

 

[OceanAnnie]

This is such a good group. A big thank you to everyone.

I wanted to post that I took Tamoxiffen for 5 years after diagnosis. I tested as estrogen positive, so it was recommended.

I had no issues other than I went directly into menopause, which at age 50 plus, I was probably going to get there quick anyway but I had not had any of the typical signs of beginning menopuse.

I too did a lot of reserach but my case is different since I did have cancer.

Also, I starting on Synthroid around the time I was diagnosed with breast cancer. I had lumps or nodules in the thyroid since at least when they were first detected in 1991. Had them biopsied about three times over the years and no cancer was detected. In 2004, I was diagnosed as hypothyroid and started on the Syntroid.

I am taking 100 MCG a day, but started lower, and was titrated to that point. I am seen by a endocrinologist every 4-6 months and have bllod work to monitor the thyroid. My thyroid gets an ultrasound once a year, and the Synthroid seemingly helped them to shrink.

Hope this info is helpful.

If it were my decision to make, I would take the Tamoxiffen. There are risks, but they can be managed. I read a lot about the preventative studies with this drug held years ago and that helped me feel better taking it.

If I had started with bad symptoms I am not sure what I would have done. I think Merry was also on it but had to get off of it.

I am not sure why the side effects are worse in some people rather than others. Unfortuantely, you don't know how you will react until you try it.

Thank you for sharing your decision and your experience. It is helpful.

I hadn't heard of testing for estrogen levels prior to going on Tamoxifen. That's interesting. I have been reading about it off and on. I did read where some women take it in low doses and gradually build up to the dose level prescribed. The ones that did this seem to think it helped with holding off side effects. I'm keeping that in mind. I tend to be sensitive to medications.

The weird thing is my surgery site/area still hurts. It was a week ago today. Sometimes it seems more painful than right after surgery. It comes and goes. I'm keeping an eye on it. Been wondering if it could be an infection, but I don't have a fever or anything. Maybe it's just the bra or the way I sleep. It's not awful or anything. Strange though.

I hope everyone is having a good day.

 

[CherylDan]

Since we all seem to be telling our tamoxifen stories, I give you mine for what it's worth. I was first diagnosed in Nov 06, age 44, no family history, just blindsided. At time of diagnosis, I had a lot of positive nodes, very agressive grade 3. Had mast, chemo, and radiation...and four years of tamoxifen.

I would say the worst part of the tamoxifen was the hot flashes....not sure if the chemo threw me into instant menopause or if it was the tamoxifen, but for sure the hot flashes were from the tamoxifen. I ended up taking effexor to help combat them, and it did help.

I was also estrogen positive....I can't remember off hand, but I think that tamoxifen is only for estrogren positive...or maybe that is only if you already have breast cancer? Had I been given the chance to *maybe* avoid cancer with a preventative medication, I can say, knowing what I know now, I would have gladly taken it in a heartbeat. No question about it.

Unfortunately, I still ended up with metastatic BC four years after initial diagnosis. Do I regret taking the tamoxifen? NO. I had four good years. Did the tamoxifen have anything to do with that? I don't know.

 

[CherylDan]

Cheryl - will your dd be at Cosmic Rays on the 20th?


.

I'm pretty sure her last day is the 18th. I hope all you gals have a great time getting together next week....wish I could be there!!!

Lisa, are you getting to "attend" any of the other wedding events on Skype? Rehersal?

smiley....isn't is weird about the hair? I mean it's awful to see it all come out, but not having to deal with it does have it benefits! LOL....isn't it strange how there always seems to be a least some kind of redeeming feature in all this insanity? Well, really, really, really small ones anyway.

Laurie, hope you are doing ok with all the flooding coming your way.

Pat's Mom....enjoy the beach club! Sounds wonderful

Linda....love the purple tablets idea!!

GAGWTA!!!

 

[Sha]

(Early) Good morning ladies... first since I woke up and havent gotten to go back to sleep yet, I thought I would try to catch up again. I just want to tell you Ladies that you are ALL SO AMAZING!!! Love ya'll.

Laurie- keep us posted on the water. A friend of mine there says he isn't worried and am going with his feelings. He took some pictures out on the levee at BR the other night, saying it was the last night they were allowed up there. That the lower level of the levee was already under water. I just read they are opening up a gate for the spill way.

I read about braces and I cringed! I remember having that metal taste in my mouth and pain as they tighted to move my teeth. I use to bite my orthodontist (as did my sister).

Change of some plans for the weekend of the 20th. My mom, niece and myself will be there. Others arent coming, mainly because one sister can't get the time off. Im actually a little relieves as she is the one who drives me nuts. She doesnt seem to get it about Disney. No set plans for what we are doing. Just meandering. Would you all like to meet up sometime that weekend. Just pick a rough time and a place? I will get in sometime after work on the 20th. I don't know how late I will be based on my schedule. I am lightening it up though as I can. Just depends on admissions. Who all is going to be there again? I know LMP and myself...

I have decided that I am doing 2 walks in October. The 2 5ks and not the 3 day walk. I may use part of my vacation to travel elsewhere since I will be at WDW for my HS reunion in Orlando.

Things are still a bit hectic at work and changing still. Am debating about a change of jobs. We shall see. Also had a break up that has been a lot of... I dont even know. It is for the best and think God opened another door right before. We shall see where it leads... other than another trip to WDW after Memorial Day weekend. I am not going to read more into what he says... Will see JSG that weekend I hope.

Im going to try to back to sleep....

 

[Pea-n-Me]

Pat's Mom have a great trip!!

Annie, one more thing about the tomox - I was "triple negative" meaning my cancer was not hormone related, so I couldn't take tomox. I was kind of bummed at the time because I liked the idea of "anything" that could help keep it away. But it wasn't an option so I had no decision to make about it, which was fine. Just an fyi why no personal experience here.

I hope everyone has a nice weekend with good weather! GAGWTA!

 

[jackskellingtonsgirl]

GAGWTA, Ladies!

Smiley, I am glad the taxol is going OK! I hope the neuropathy isn't too horrible.

Laurie, WOW! I had no idea about the spillway/flooding issues. DH and I were just watching it on the news. I hope you and your family stay safe and don't have any damage.

PatsMom, Have a FABULOUS time at BC!!

Annie, I hope the soreness from the surgery resolves soon!

Sha, would love to see you next month!

Candy, how is DD doing with the braces? How are the party plans coming along? DS has been out of his braces for a couple of years, but ibuprofen seemed to help him.

Hope everyone has a nice weekend.

DS is participating in a "24 hour video race" with some classmates. We had to take him to the Start line at midnight, then we got up at 5 AM. I am the mean mom who made him come home and sleep for 4 hours instead of going with the team. I suspect they didn't accomplish much (if anything), and none of them were awake at 6 AM which is when they were supposed to start filming. DS got there at 6:30 AM today. He got up at 6:30 yesterday morning so I REALLY wanted him to get some sleep. I can't imagine he would have been any use after being up for 24 hours before they even started. He will be a beast by the time they finish up tonight.

 

[wdw4us2]

Laurie - I hope you don't get flooded. I can't believe what's going on with the weather all over the country. They just announced yesterday that we live in the driest county in the state. Fortunately, it's raining here right now.

Annie - I'm ER positive. I've been taking Femara since last October when I finished my Herceptin infusions. I didn't take Tamoxifen since I had already started chemopause a few months earlier. No side effects from the Femara, thus far.

MaryAnn - Sorry you are dealing with so much with your foreign guests. Some people are just never happy no matter what you do.

Smiley - I'm right there with you with the eyebrows thing. I didn't lose them during my chemo last year, but they're gone now! Eyelashes, too.

Well, the Skype feed didn't work during the wedding. DH recorded it though, so I Will get to see it after he gets back. It worked during the reception, so I was able to see everything and talk to a lot of people. Still not the same as being there, though.

Meg just called me. She has completed day 2 of her Splash Mountain training and is really enjoying it! I get a full report every day of all the new things she has learned that we didn't know about the attraction. I hope her enthusiasm continues and that she passes her test in two weeks. Lots of information about the ride that she has to know - I'm amazed by how much they have to remember to work there.

 

[Pea-n-Me]

Laurie (snappy), stay safe! Sending prayers for you and all those around you.

 

[snappy]

Lisa, I am sorry you could not see the wedding live. It must have been disappointing. I am glad Meg is enjoying her training. I hope I get to meet her.

Sha, I am arriving on the 19th, on Thursday. Give me a call when you arrive.
I think Patsmom will be in Orlando too?

What are the dates of the races?

Mississippi river update: We were told Thursday night to be prepared. Most likely scenario is just very wet yard and sweaty driveways, streets. Our levees are high (45-47 feet high) but not as strong as the ones throughout New Orleans, as we are after all above sea level by about 50 or so feet, again unlike New Orleans.

Packing up documents, pictures, momentos, just to be safe. I also used DH's new camera to take pictures of our jazz posters, furniture, rugs. We have the max levels of flood insurance so everything would be covered at replacement costs, with a $1,000 deductible.

Just hope it does not come to that. The pressure on the levees will be strong-the water may stay high for weeks.

In New Orleans they have two levees in some areas and have let the water into the outer levee so that the pressure of the water helps fortify the inner levee. It caught some off guard as they were not alerted.

I am not sure what the public officials were thinking.

Same issues here as the Army Corp of Engineers who maintain the levees in some areas prepared several maps this past week, one of which shows our whole city under water.The newspaper in New Orleans published it and all hell broke lose. The Corp then release them too, belatedly with some **** a manie story that they prepare many scenarios for the governor, even worst cased scenarios like that one.

We are just scratching our heads.

Thanks for the concern folks.

 

[Pea-n-Me]

Lisa, I am sorry you could not see the wedding live. It must have been disappointing. I am glad Meg is enjoying her training. I hope I get to meet her.

Sha, I am arriving on the 19th, on Thursday. Give me a call when you arrive.
I think Patsmom will be in Orlando too?

What are the dates of the races?

Mississippi river update: We were told Thursday night to be prepared. Most likely scenario is just very wet yard and sweaty driveways, streets. Our levees are high (45-47 feet high) but not as strong as the ones throughout New Orleans, as we are after all above sea level by about 50 or so feet, again unlike New Orleans.

Packing up documents, pictures, momentos, just to be safe. I also used DH's new camera to take pictures of our jazz posters, furniture, rugs. We have the max levels of flood insurance so everything would be covered at replacement costs, with a $1,000 deductible.

Just hope it does not come to that. The pressure on the levees will be strong-the water may stay high for weeks.

In New Orleans they have two levees in some areas and have let the water into the outer levee so that the pressure of the water helps fortify the inner levee. It caught some off guard as they were not alerted.

I am not sure what the public officials were thinking.

Same issues here as the Army Corp of Engineers who maintain the levees in some areas prepared several maps this past week, one of which shows our whole city under water.The newspaper in New Orleans published it and all hell broke lose. The Corp then release them too, belatedly with some **** a manie story that they prepare many scenarios for the governor, even worst cased scenarios like that one.

We are just scratching our heads.

Thanks for the concern folks.

Please keep us updated!

 

[smiley_face2]

Laurie, I'm thinking about you a lot, hoping and praying you and your home will be fine!! there's a lot on the news about it even way up here in south west Canada!
I didn't end up getting any spasms so I know it was the Emend causing the problem. Still, it saved me on my last A/C treatment from the extreme nausea and vomitting so I would take it again if I had to under those circumstances. I had a couple of days of pains in a few of my fingers and a couple of toes, so I'm guessing it ( peripheral neuropathy ) is a cumulative thing. Just hoping I can get through the whole course of treatments without it getting too bad. I really wonder why they changed the protocol for taxol from 4 treatments every second week, to 12 treatments weekly. I'm hoping it's because it increases the positive prognosis significantly, but so far I can't find any information on it anywhere. Will keep looking because it is making me crazy thinking about how much longer I have to go over what they first said. It looks like a winter day outside today. We had a record cold and rainy April, and it looks like May is trying to keep up with that makes for a lot of long boring days not being able to get outside.

 

[snappy]

Smilie, I am glad you did not experience the spasms this time. I do think the neuropathy builds up over time.

Elizabeth, that video race sounds so cool and sophisticated. Both back in my day. . .


Lisa, I hope you enjoy the video of the wedding. At least you could see the reception live. I hope you DH and son got home safely.

Oceanannie, is your surgical site still sore?

Sha, I am thrilled to know I may get to see your mom too! Where are you staying?

I think we are eating at Kona Friday night, then heading to MK to maybe see Meg.

Saturday, I am totally open, Sunday moving in the am, tea at 3:30.

Do you still have my cell number?

It appears that the river is cresting tomorrow instead of next week due to the opening of a few of the gates of the spillway.

It was a beautiful cool and sunny day yesterday, very odd for mid-May. The water should not overtop if they continue to open the gates, which they plan to. The paper said LSu (and us, lol) is one of the most hydrologically vulnerable areas of the city.

Funny how they never said they before, like, ahem, when we were looking for real estate when we moved here in 1999. Yep, no flood insurance required, but we got it anyways, it was not expensive.

If the levees hold with the pressure, we should be ok. We got everything irreplaceable packed up. Man there was a lot of dust on all the pictures. Time to do some spring cleaning, always a bright spot, right?

 

[OceanAnnie]

Thanks for asking about me. You guys are too much. You are going through tough treatments, and a real possibility of flooding and you ask about me. Thank you. And thank you for telling me about your experiences with Tamoxifen and similar drugs. It does help.

I have some areas near the steri-strips that have not healed. It's not the surgical site. I think that irritated area is the source of most of my discomfort. I pulled off some skin in two areas when the drainage/blood stuck to the flat cotton pad. I realized I need a barrier and put a light layer of neosporin on the cotton pad to keep the cotton pad from sticking to the area, so when I change the pad it doesn't stick. I started that yesterday. It has helped, it looks a little better.

I'm on the fence about contacting the surgeon's office. I think it might heal on it's own. I'm thinking I'll give it a day or so and if it doesn't I'll give them a call.

I've been reading a lot about breast cancer prevention. Some things seem to be plausible and other information seems questionable. I don't know. I have been somewhat hopeful for a natural course. Just reading a lot. Taking breaks now and then. Digesting it all.

I hope everyone is having a good day.

 

[luvmarypoppins]

Good afternoon ladies, cold,wet and rainy here

Annie - I hope you are healing. I am sure all that reading makes your head spin. Write down any questions you have etc.

Laurie - the flooding news is on the tv here too and in the paper. They said they are trying to save NO and BR by doing this.Hope you are bearing up with this uncertainty.

Sha - looking forward to meeting you

Candy - how is your dd and the brace pain

smiley - hope your side effects are bearable and that you get nicer weather too!

Linda - I saw your Red Sox took care of our Yankees!

Pats mom - got your pm

Lisa - I will pm you my cell # for Meg. I am glad you got to "see"and talk to the people at the reception.

Elizabeth - that race sounds so cool for your ds

Cheryl - how are you?

Well I am back from the ent and hearing test. It was so long and so much waiting. DH was getting really mad. I did well on the hearing test.Got to see the 2 other surgeons walking by, killer and life saver. Then saw the head ent of the dept. He was grumpy. He did some testing, moving my neck and head around, making me put on these weird blurry goggles. He thinks the vertigo is getting better. Could have been caused by an infection. Said dont come back unless it worse. Showed me an exercise to try. Said there are others but I cant do them because of my neck being dissected. He wished me luck with my cancer testing next month. Dh has an exhausting time at the statue of liberty yest. and then drove them around nyc. I think he will be ready for a vacation by friday too.

GTAGWTA.

 

[jackskellingtonsgirl]

GAGWTA, Ladies!

Lisa, I am sorry the Skype didn't work for the wedding. Sounds like Meg is doing well with her training!

Laurie, I hope things are not too soggy for you guys! Have a terrific trip!

DS loved the video race. They had to use 4 elements. It had to be called "A Day to Remember", it had to be set in a garden, it had to use a ball as a prop, and it had to include the line "We can do that tomorrow." The girl who wrote/directed the video cast DS as a shy, nerdy boy with a crush on a girl who turns out to be a lesbian. It was cute. They did a nice job on it. There is a screening tomorrow at 6:15, not sure if I can get there after work or not. DH is going to take DS.

Smiley, hang in there! I don't know why they changed the dosing on the Taxol to weekly. I can't remember if I knew the reasoning behind it when my mom was in treatment or not.

Annie, YOUCH! That bandage sounds like it hurt! I hope you are feeling better and starting to wrap your head around the drug info.

Maryann, I hope the vertigo is resolving!

Candy, what's up? How are the party plans progressing?

 

[Sha]

Will be staying at OKW.

Me too LMP!!!! Seems we have missed each other many times.

Did we want to try to meet all at one spot at some point? or just play it by ear?

Looking forward to it! I need this trip... been so stressed. And then the other one in couples afterwards.

Race dates are: October 16th for Orlando at UCF. Tampa/St Pete is October 1st.

 

[snappy]

I personally think we should plan. Are you getting in Friday evening Sha?

Lisa, how are you?

 

[snappy]

The river is expected to crest up to 2 feet lower. There has been such a drought for years that the water at least in the area where the water is now flowing after being diverted is now being absorbed by the dry land more that was expected.

We may be ok if a loaded barge does not slam into the levee. I heard a guy last night say who has worked ont he river for years that with the fast flow speed of water he thinks controlling traffic on the river is quite dangerous right now.

Hopefully, they are being extra cautious.

I am just feeling a bit better generally, at least for our location.

Now I can relax and try and get ready for my trip.

 

[Candy30]

Smiley- Glad the spasm werent bad. I remember losing hair in the shower and how my scream scared my husband to death. Hang in there.

Lisa- I am sorry you didn't get to see the wedding. I am glad you at least got to talk/participate some in the reception. I know your daughter is getting excited!

Annie- I agree with everyone about not apologizing. No matter how small it is or big of a problem it is, you are effected. Keep plugging along. I cringed when I read about you pulling your bandage off your surgery area. I couldn't do it.

Snappy, Sha, LMP, and Jacks- If you all get together you have to post a picture!!! That would be sooo cool!

Sha-Sounds like you need a break and Disney is just the place. I hope things work out. A break up is always hard even if its the right thing to do.

LMP-What a pain those clients are for your hubby? And what you said he ate . They should be happy to go to McDonalds!!! That's nice he went out of his way. Shows he is a good guy. So does the ENT think the dizziness will get worse? Are you going to have any Physical Therapy for vertigo. I know where I worked before there was one therapist specifically for that.

Snappy- You are in my prayers. I think FL and Disney is a great place to evacuate too!!!!

PNM- Your daughter jumping into the pools gave me chills. LOLOL Now you can give your kids Pool parties now!!!

Patsmom- How are you? Hope you have a wonderful time!!!

Jacks- Are you packing yet??!!??!! The party plans are ongoing. Finalized all of the vendors and set aside money for that. Now I have to begin buying the food. My daughter loves the color blue and only wants blue drink. But I don't think that will work.

Speaking of the party, Once again I have to find sleeping arrangements in my 3br little house for 16 people!!! And one bathroom. My husband family hates to stay anywhere else. They also do not want to rent a hotel room.... We make sure we do when we visit them. I have two blow up mattresses which are twin, a pull out couch, 2 cots, and one double blow up mattress. It makes it quite difficult. The age ranges from 2-76. I also have to remember to buy breakfast food for the weekend they are here.
Don't get me wrong. I love my in laws. They are the best you can have. Just when I am planning a party this part always adds more stress. You know you always have the one that's ALWAYS late or doesn't want to do this or that or eat this or that. On a normal visit that wouldn't bother me so much but on this visit........Not Good!
My DD is doing better with the braces. She started eating finally on Monday. I think she has lost weight. My son is trying for a Externship with the Pittsburgh Zoo. It is hard to get. He is hopeful. Those are the animals he wants to deal with. I really thought he was going to go for the reptiles but he is leaning toward the Larger animals. Part of me wants him to go back to reptiles.

The synthroid is better. The headaches are not as bad. This morning the headace only last for 1/2 hour. I am glad warmer weather is here. I do not get my spasm as much.

You all are the best. GAGWTA