New to Board

blazintrails · February 2013

Hello,

My names is Sharon and I was diagnosed with HER 2 BC Jan. 11,13. I just had a double mastectomy Feb 15,13 with reconstruction started. I will be starting my chemo/herceptin treatments around the first week of March.

I'm a little afraid (ok alot) of the chemo treatments and the chance that this crap comes back. I don't know answers yet and still very confused on all.

I just lost my sister to stage 4 cancer (not bc) 12/24/12 and still have a lot of emotions running wild.

I don't know what questions to ask, what to expect after treatments and will I be able to be MY normal self when all said and done. See I work horses for my living. I lift 110# bales of hay, 50# sacks of feed, muck stalls, give lesson's and train horses.

On the good note, my oncologist is a horse person who supports me being around my horses but I understand "limits"

Things on the internet are scary and really put me into a depression (almost as bad as seeing my chest for the first time ) and I hope that by reading some of the threads here may set my mind at ease.

Sharon

Lynn Smith · February 2013

You've had alot

You've had alot going on the last month.Having lost a sister to cancer and then less than a month later you found out you have breast cancer. You have to be in turmnoil now but sounds like with a understanding doctor and already having your surgery you're on the way to being in remission soon.

I didn't need chemo or radiation.DCIS non invasive tumor 1/2 centimeter.I worried about the chemo.I know 2 of my friends had problems with chemo but they ended up doing fine and are now long term survivors.One with Stage 3 and now a 18 year survivor.The other with a fast growing cancer Stage 3 and still doing fine after 8 years.Both had lumpectomies.I worried at the time about lumpectomies but they are fine.

Follow what your doctor tells you.She will guide you right.With her working with horses she knows what it meana to you to continue working with them.After the decision on what to do as far as chemo etc it won't be long till you will be back to normal but don't rush it.Take your time.

Very sorry for the loss of your Sister.You're in my Thoughts and Prayers

Lynn Smith

disneyfan2008 · February 2013

welcome...

Denise

welcome...

Denise

SIROD · February 2013

Welcome!

Hi Sharon,

Welcome to our board and you will find lots of ladies here with lots of sound knowledge.

You have come with a plate that is very full having loss a sister in December, diagnosed with bc, then a double mastectomy.

A lot to deal through in a very short period of time.

Think up some questions and I am certain there will be answers for you.

Remember that with breast cancer 70% are diagnose, go through surgery, treatment and never have a recurrence and do go on to live a cancer free life.

You still have another rough part to go through. I am not HER2 but I believe you will have herceptin for about a year.

Chemo these are different than when I first had treatment. I know fatigue can be a problem.

So fire away with the questions.

Best to you on this journey,

Doris

PS: It is nice that your oncologist is a horse person too.

blazintrails · February 2013

SIROD said:
Welcome!
Hi Sharon,

Welcome to our board and you will find lots of ladies here with lots of sound knowledge.

You have come with a plate that is very full having loss a sister in December, diagnosed with bc, then a double mastectomy.

A lot to deal through in a very short period of time.

Think up some questions and I am certain there will be answers for you.

Remember that with breast cancer 70% are diagnose, go through surgery, treatment and never have a recurrence and do go on to live a cancer free life.

You still have another rough part to go through. I am not HER2 but I believe you will have herceptin for about a year.

Chemo these are different than when I first had treatment. I know fatigue can be a problem.

So fire away with the questions.

Best to you on this journey,

Doris

PS: It is nice that your oncologist is a horse person too.

Thank You

Thank you the warm welcome.

I'm at a loss with losing my sister and never really had time to grieve when I was hit with my situation. I know she would want me to take care of my situation instead of worrying about her, she was just that way. Just a good hearted person who would give you her last dime to help.

I understand that I will be under going 6 treatments of HELL and a full year of herceptin. The radiation is up in the air right now because I'm NODE NEG!!! (YAAAAAA!!!) I will know more March 4th. (my sister went worse with radiation and passed after 2 treatments)

I had a mild melt down when I first saw my chest. What a frieghtful sight!!! But the cancer is gone!!!! It's still hard to look at myself in the mirror

Now I must get off of the pitty stand and move forward with the hand I was dealt (LOL I'm from Las Vegas, NV!!)

SIROD · February 2013

blazintrails said:
Thank You
Thank you the warm welcome.

I'm at a loss with losing my sister and never really had time to grieve when I was hit with my situation. I know she would want me to take care of my situation instead of worrying about her, she was just that way. Just a good hearted person who would give you her last dime to help.

I understand that I will be under going 6 treatments of HELL and a full year of herceptin. The radiation is up in the air right now because I'm NODE NEG!!! (YAAAAAA!!!) I will know more March 4th. (my sister went worse with radiation and passed after 2 treatments)

I had a mild melt down when I first saw my chest. What a frieghtful sight!!! But the cancer is gone!!!! It's still hard to look at myself in the mirror

Now I must get off of the pitty stand and move forward with the hand I was dealt (LOL I'm from Las Vegas, NV!!)

Pity Party

It's ok to cry, we all do. It's a shock and for you so soon after a lost.

I always said have a pity party but move on the next day with something positive. I worked, so I had that to keep my mind of things.

Thinking of you,

Doris

Rague · February 2013

Having horses does help you through 'it'

Though I don't make a living with horses, my horses (4 Apps) were definately a big part of what kept me going. Hubby and Son were definately there for me and did take up any 'slack' that I didn't feel like doing but as you know there is something special about being around horses.

My TX (treatment) plan was different than yours - I did 4 DD A/C (Adriamycin/Cytoxan) neo-adjuvant (before) surgery late Aug - mid Oct 09. Mod. rad. mast. Oct 21 followed by 12 weekly Taxol and then 25 rads. I am glad that I went through winter for TX as it didn't take away a lot of time riding as winter is long and brutal here (Black Hills of SD). I boarded at a heated barn with a large indoor so could keep them worked when I wanted to. While on A/C, I was fine to do all but didn't argue when either of them took over mucking. A/C was easy for me - just a bit tired, but a nap would take care of that, on days 3 & 4 after infusion. (Hair did fall out - we had a 'head shavin party' at the barn where Son used the clippers on me and then he and our other 'Sons' took turns doing each other. I also lost sense of taste and snell, lost appetite but never had any nausea.) Taxol was nasty though - I was completely and utterly EXHAUSTED the entire time - I existed on the couch in front of TV or in bed. Looking back though, I think that my SAD (Seasonal Affective Disorder) may have played into that some.

Remember that we are each unique and no 2 of us react the same. I pretty much can (and do) everything I did BBC (Before Breast Cancer). I do get tired easier but then I'm 66 1/2 (was 63 when DXd) so that probably is part of the reason LOL)

I would suggest that you see a CERTIFIED LymphEdema Therapist (not some PT who claims to 'know all about' LE) ASAP as you are a very active person. LE is a possible issue you might have to deal with - but it is mangeable IF it developes. Not all are the same - my LE guy is great though we did have a few 'go arounds' early on. My care is through VA so he had only seen one other woman with post mast. LE before me and she was in the nursing home. I deal with it and the more active I am the less issues I have - I still buck hay, sling bags of feed, heft my roper on 16.2hh gelding. Yes - it did take some time to come back -------- but come back I did.

Cowgirl Up!

Winyan - The Power Within

Susan

Used to live not terribly far from you - Hubby was stationed at NWC China Lake in the late 80's.

lintx · February 2013

Welcome, Sharon!

I had a bilateral last May/w immediate reconstruction. I know you're afraid and glad to read you understand limits with the lifting, etc. Takes time to recover, but it will happen. I did all sorts of internet searches in the beginning but have learned much more from this board. Whenever you see Doris responding, read her posts! Trust me. She is a wealth of info, and the statistics she's provided gave me reason to see beyond my first year of bc. Your questions will always be answered by someone with similar history. Have a great day! Linda

Gabe N Abby Mom · February 2013

Hi Sharon,
I know you don't

Hi Sharon,

I know you don't want to be here, none of us do, really. But this is an amazing group of people. You can come here to vent, cry, laugh, ask questions, etc. We'll be here with you. As Susan said, we are all different, but there are usually areas where we can relate to your situation.

Do you know what kind of chemo you will be having? It doesn't have to be hell, it won't be fun, but it's doable. We have lots of tips and tricks to help you get through it.

Most important, drink lots of water! Staying hydrated often makes you tolerate the chemo a little better, and it flushes it through your system faster (better for your liver). Then be sure and rest when you need it...don't try too hard to push through the tired. In my case that only made me permanently tired. Sleep when you need it, it's ok to be a couch potatoe. But when you can, exercise will also help you feel better. Even if it is 'just a walk'.

Please come back and let us know how you are doing.

Hugs,

Linda

JLynn0807 · February 2013

Newbie from New Jersey/Also new to Board

Hi to everyone!!

I don't know if this board is broken down by stages of cancer or what?? I am just two days out of being diagnosed Stage IV. So between crying and trying not to cry in front of my kids and husband and even my dogs, it's been some fun two days.

Is anyone else here Stage IV? I do hope not, but.......looking for someone in a similar situation. I have had NO surgery. In fact, NO treatment yet whatsoever. It's only been a month since I got on this crazy train, and have had three biopsies, a port, a PET, and lots of other annoying stuff! I'm scared to death, and not sure what to do with myself from one moment to the next. Yes, I am sitting in the "poor me" chair for a bit. I have mets to chest wall, and one T11 spine. Looks like my onc wants to start me on Tamoxiflen (I know I've spelled that wrong) on Friday. He is presenting my case to his "cancer friends" on Friday am, and we (my husband and I) will see him Friday afternoon.

Any insight? Any suggestions?

Praying for all of us!

Lynn

blazintrails · February 2013

Rague said:
Having horses does help you through 'it'
Though I don't make a living with horses, my horses (4 Apps) were definately a big part of what kept me going. Hubby and Son were definately there for me and did take up any 'slack' that I didn't feel like doing but as you know there is something special about being around horses.

My TX (treatment) plan was different than yours - I did 4 DD A/C (Adriamycin/Cytoxan) neo-adjuvant (before) surgery late Aug - mid Oct 09. Mod. rad. mast. Oct 21 followed by 12 weekly Taxol and then 25 rads. I am glad that I went through winter for TX as it didn't take away a lot of time riding as winter is long and brutal here (Black Hills of SD). I boarded at a heated barn with a large indoor so could keep them worked when I wanted to. While on A/C, I was fine to do all but didn't argue when either of them took over mucking. A/C was easy for me - just a bit tired, but a nap would take care of that, on days 3 & 4 after infusion. (Hair did fall out - we had a 'head shavin party' at the barn where Son used the clippers on me and then he and our other 'Sons' took turns doing each other. I also lost sense of taste and snell, lost appetite but never had any nausea.) Taxol was nasty though - I was completely and utterly EXHAUSTED the entire time - I existed on the couch in front of TV or in bed. Looking back though, I think that my SAD (Seasonal Affective Disorder) may have played into that some.

Remember that we are each unique and no 2 of us react the same. I pretty much can (and do) everything I did BBC (Before Breast Cancer). I do get tired easier but then I'm 66 1/2 (was 63 when DXd) so that probably is part of the reason LOL)

I would suggest that you see a CERTIFIED LymphEdema Therapist (not some PT who claims to 'know all about' LE) ASAP as you are a very active person. LE is a possible issue you might have to deal with - but it is mangeable IF it developes. Not all are the same - my LE guy is great though we did have a few 'go arounds' early on. My care is through VA so he had only seen one other woman with post mast. LE before me and she was in the nursing home. I deal with it and the more active I am the less issues I have - I still buck hay, sling bags of feed, heft my roper on 16.2hh gelding. Yes - it did take some time to come back -------- but come back I did.

Cowgirl Up!

Winyan - The Power Within

Susan

Used to live not terribly far from you - Hubby was stationed at NWC China Lake in the late 80's.

Thank you for all

Thank you everyone for the advice. I like everyone else needs a little help and advice especially now.

I'm thankful because horses are my passion. I do all this hard work for the love of it and not the money LOL and as a fellow horse person you know what I mean

It means a lot about your post that your back to YOU after BC and something to look forward to.

blazintrails · February 2013

lintx said:
Welcome, Sharon!
I had a bilateral last May/w immediate reconstruction. I know you're afraid and glad to read you understand limits with the lifting, etc. Takes time to recover, but it will happen. I did all sorts of internet searches in the beginning but have learned much more from this board. Whenever you see Doris responding, read her posts! Trust me. She is a wealth of info, and the statistics she's provided gave me reason to see beyond my first year of bc. Your questions will always be answered by someone with similar history. Have a great day! Linda

Thank You

Hi Linda,

I've done some internet searches and that literally set me into a depression When I don't fully understand everything and seeing/reading some internet info just made my mind want to explode. Its getting better on some because I understand a little more about the type of cancer that I have.

Thank you for the heads up on Doris. I've noticed quite a few people with valuable help and a wealth of knowledge.

blazintrails · February 2013

Gabe N Abby Mom said:
Hi Sharon,
I know you don't
Hi Sharon,

I know you don't want to be here, none of us do, really. But this is an amazing group of people. You can come here to vent, cry, laugh, ask questions, etc. We'll be here with you. As Susan said, we are all different, but there are usually areas where we can relate to your situation.

Do you know what kind of chemo you will be having? It doesn't have to be hell, it won't be fun, but it's doable. We have lots of tips and tricks to help you get through it.

Most important, drink lots of water! Staying hydrated often makes you tolerate the chemo a little better, and it flushes it through your system faster (better for your liver). Then be sure and rest when you need it...don't try too hard to push through the tired. In my case that only made me permanently tired. Sleep when you need it, it's ok to be a couch potatoe. But when you can, exercise will also help you feel better. Even if it is 'just a walk'.

Please come back and let us know how you are doing.

Hugs,

Linda

Thank You

Hi Linda,

Thank you so much for all the wonderful advice! I feel mixed with being thankful to have others like me but then again I wish there was NO ONE (including me) that has to deal with this.

I don't know the type of chemo treatment I will be getting but that will be added to my list of questions for my oncologist.

I will definately be back

Sharon

blazintrails · February 2013

JLynn0807 said:
Newbie from New Jersey/Also new to Board
Hi to everyone!!

I don't know if this board is broken down by stages of cancer or what?? I am just two days out of being diagnosed Stage IV. So between crying and trying not to cry in front of my kids and husband and even my dogs, it's been some fun two days.

Is anyone else here Stage IV? I do hope not, but.......looking for someone in a similar situation. I have had NO surgery. In fact, NO treatment yet whatsoever. It's only been a month since I got on this crazy train, and have had three biopsies, a port, a PET, and lots of other annoying stuff! I'm scared to death, and not sure what to do with myself from one moment to the next. Yes, I am sitting in the "poor me" chair for a bit. I have mets to chest wall, and one T11 spine. Looks like my onc wants to start me on Tamoxiflen (I know I've spelled that wrong) on Friday. He is presenting my case to his "cancer friends" on Friday am, and we (my husband and I) will see him Friday afternoon.

Any insight? Any suggestions?

Praying for all of us!

Lynn

Hi NJ

Hello Lynn,

I'm so sorry to hear your news of BC and your stage. This is a tough pill for all of us and I know I can relate about secretly crying in the shower, in the car, cooking and all night. I had to keep my sisters death a secret until after Christmas and then it was 2 days after I found my "gift" I did tell my family pretty much right away about the BC except my son who was in his last stage of training in the Marines and was in MO so I didn't want to worry him.

I'm new to all this roller coaster stuff myself but I'm sure there are others who are more knowledgeable than I that can offer some enlightful suggestions to help you.

I know with mine it was biospy on Jan 10, results on the 11th, surgurgy with port on Feb 15th and chemo/herceptin treatments in March. Things are flying but the faster that I can get this over with the faster I can health and move on with my life.

I hope things go well with you.

God Bless and prayers

Sharon

Double Whammy · February 2013

blazintrails said:
Hi NJ
Hello Lynn,

I'm so sorry to hear your news of BC and your stage. This is a tough pill for all of us and I know I can relate about secretly crying in the shower, in the car, cooking and all night. I had to keep my sisters death a secret until after Christmas and then it was 2 days after I found my "gift" I did tell my family pretty much right away about the BC except my son who was in his last stage of training in the Marines and was in MO so I didn't want to worry him.

I'm new to all this roller coaster stuff myself but I'm sure there are others who are more knowledgeable than I that can offer some enlightful suggestions to help you.

I know with mine it was biospy on Jan 10, results on the 11th, surgurgy with port on Feb 15th and chemo/herceptin treatments in March. Things are flying but the faster that I can get this over with the faster I can health and move on with my life.

I hope things go well with you.

God Bless and prayers

Sharon

For whatever it's worth . . .

Chemo sucks, but you can do it. I hope you can allow yourself to rest as needed and take really good care of yourself throughout this journey. There are women who work throughout chemo and my recollection is I could have if I had to, but I'm glad I was retired and didn't. You will likely be surprised at how well you feel the first couple of rounds, but chemo is cumulative and each session is a little more difficult. This seems to be true for all of us, no matter what cocktail we had. You'll learn that you'll develop a sort of schedule - days X-X you'll feel like this and days X-X you'll feel like that. The good thing about this is you will remember that the yuck doesn't last forever and by such and such you should feel better. Unfortunately, just as you're starting to feel really good again, it's time for another infusion and the cycle begins again. There are plenty of drugs available to help with side effects and they worked very well for me. I hope it does for you.

My children live in Henderson. I'll be visiting them in early April. Let's keep in touch.

Welcome to our group-lots of love and support here.

Suzanne

DebbyM · March 2013

lintx said:
Welcome, Sharon!
I had a bilateral last May/w immediate reconstruction. I know you're afraid and glad to read you understand limits with the lifting, etc. Takes time to recover, but it will happen. I did all sorts of internet searches in the beginning but have learned much more from this board. Whenever you see Doris responding, read her posts! Trust me. She is a wealth of info, and the statistics she's provided gave me reason to see beyond my first year of bc. Your questions will always be answered by someone with similar history. Have a great day! Linda

Hi Sharon and welcome to the

Hi Sharon and welcome to the best support group ever!

blazintrails · March 2013

Double Whammy said:
For whatever it's worth . . .
Chemo sucks, but you can do it. I hope you can allow yourself to rest as needed and take really good care of yourself throughout this journey. There are women who work throughout chemo and my recollection is I could have if I had to, but I'm glad I was retired and didn't. You will likely be surprised at how well you feel the first couple of rounds, but chemo is cumulative and each session is a little more difficult. This seems to be true for all of us, no matter what cocktail we had. You'll learn that you'll develop a sort of schedule - days X-X you'll feel like this and days X-X you'll feel like that. The good thing about this is you will remember that the yuck doesn't last forever and by such and such you should feel better. Unfortunately, just as you're starting to feel really good again, it's time for another infusion and the cycle begins again. There are plenty of drugs available to help with side effects and they worked very well for me. I hope it does for you.

My children live in Henderson. I'll be visiting them in early April. Let's keep in touch.

Welcome to our group-lots of love and support here.

Suzanne

thank you Suzanne

For the tips

I will be going back to work with the horses in a few day I hope and then back in April at the store. Sleeping now is horrible. I have to sleep on my back which I have back problems and can't get comfortable. I'm looking forward to a full nights sleep SOON!!!

When you get into town give me a shout. I'm off 215 and Windmill.

Rague · March 2013

blazintrails said:
thank you Suzanne
For the tips

I will be going back to work with the horses in a few day I hope and then back in April at the store. Sleeping now is horrible. I have to sleep on my back which I have back problems and can't get comfortable. I'm looking forward to a full nights sleep SOON!!!

When you get into town give me a shout. I'm off 215 and Windmill.

Ask forrrrrr mds to sleep

"Way back then" as exhausted as I was on Taxol - I could NOT sleep. I talked to my Chemo Dr about it and he gave me a 'script for sleeping pills. They were horrible for me (but great for many). HORRIBLE NIGHTMARES! And only few hours of sleep at all. Talked to my PA about the prob and she changed me to lowest dose of Ambien and it worked great for me.

Talk to your DRs. If one (or doseage) doesn't help you there are MANY options to give you help

Winyan - The Power Within

Susan

Mariannemm · March 2013

Darn

Sorry you had to come and find us! This is a great group of people and we will be here every step of the way. Post any and all questions and you will get answers, advice and love. No better support group! I hope you will keep us posted on your jouney. Hugs, Marianne

Mariannemm · March 2013

JLynn0807 said:
Newbie from New Jersey/Also new to Board
Hi to everyone!!

I don't know if this board is broken down by stages of cancer or what?? I am just two days out of being diagnosed Stage IV. So between crying and trying not to cry in front of my kids and husband and even my dogs, it's been some fun two days.

Is anyone else here Stage IV? I do hope not, but.......looking for someone in a similar situation. I have had NO surgery. In fact, NO treatment yet whatsoever. It's only been a month since I got on this crazy train, and have had three biopsies, a port, a PET, and lots of other annoying stuff! I'm scared to death, and not sure what to do with myself from one moment to the next. Yes, I am sitting in the "poor me" chair for a bit. I have mets to chest wall, and one T11 spine. Looks like my onc wants to start me on Tamoxiflen (I know I've spelled that wrong) on Friday. He is presenting my case to his "cancer friends" on Friday am, and we (my husband and I) will see him Friday afternoon.

Any insight? Any suggestions?

Praying for all of us!

Lynn

Insight....

I have met some wonderful women while on my cancer journey. Some were a lower stage than me and some where higher. I am a stage 3, I had a very good friend who was a stage 1 and she lost her battle. I have another friend who is a stage 4 and has been for years. So don't get too hung up on the stage, you will fight your own unique battle. Stay positive but know that you are going to have some hard times, you will get through it. I have some spots the doctors are watching that are possible mets. My mind goes to some dark places some times, but I reach out to friends and family and they always pull me out of it. Don't try and do this alone!

Hugs, Marianne

Gabe N Abby Mom · March 2013

JLynn0807 said:
Newbie from New Jersey/Also new to Board
Hi to everyone!!

I don't know if this board is broken down by stages of cancer or what?? I am just two days out of being diagnosed Stage IV. So between crying and trying not to cry in front of my kids and husband and even my dogs, it's been some fun two days.

Is anyone else here Stage IV? I do hope not, but.......looking for someone in a similar situation. I have had NO surgery. In fact, NO treatment yet whatsoever. It's only been a month since I got on this crazy train, and have had three biopsies, a port, a PET, and lots of other annoying stuff! I'm scared to death, and not sure what to do with myself from one moment to the next. Yes, I am sitting in the "poor me" chair for a bit. I have mets to chest wall, and one T11 spine. Looks like my onc wants to start me on Tamoxiflen (I know I've spelled that wrong) on Friday. He is presenting my case to his "cancer friends" on Friday am, and we (my husband and I) will see him Friday afternoon.

Any insight? Any suggestions?

Praying for all of us!

Lynn

Hi Lynn,
I'm sorry you have

Hi Lynn,

I'm sorry you have the need for us...but we will do our best to help you. And yes, there are several of us here who are stage IV. Once you've been here for a while, you'll get to know us.

Do you know if you are HER/2 positive? If so, there is a very promising drug just approved by the FDA called TDM1. You may want to look at that.

Scared is very normal. Believe it or not, many of us have come to treat stage IV as a regular part of our lives. It becomes like treating other chronic diseases (think HIV positive, diabetes, heart disease). You know you have to pay attention to your health, but it doesn't have to be your whole life.

Please come back and let us know how you are doing. Best wishes.

Hugs,

Linda

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