Hi dear ones... Checking in

Mwee

Hi all.... Haven't checked in for quite awhile and was saddened by the news of Alexandra. My TEN YEAR SURVIVAL ANNIVERSARY is coming up and I wanted to share that news. For those who don't know me, I was diagnosed 3C in 2006. I had the debunking and series of chemos and went into remission for about 2 1/2 years. Since then my disease has been managed by chemotherapy on a monthly basis. Yup, that is seven years ( and counting ) that I have been on chemo! I am able to maintain a good quality of life in spite of the chemo interruptions. I've had just about all the chemo drugs that are given for Ovca, so if I can be of any help, just let me know.

Hugs.... Maria

 

 

debrajo

MWEE!

So very glad to see you check in!  Super, super Congrats on the 10 years1  My word, I am glad to see this!  We have lost several on the Below the Belt Cancers boards lately.  There are a couple of threads over on the Uterine board who were asking about different kinds of chemo...most I don't know about, thank GOD!  Maybe you would like to pop over there to see if you can answer some questions we couldn't?  So happy for you Maria, God Bless!  Best, Debra(Jo)

kikz

That is great news Maria.

I'm going to tell my oncologist about you.  The last two times I've gone through chemo I have not reached remission.  Right now I'm on a break but I'll see my oncologist next week and have my first CA 125 since December.  I hope my break continues.  But of course we do what we have to do.  It's great to hear from you.  This board has been very quiet.  I've checked in for days and no one has been on.  I was glad to see your post.  I wish you the best.

Karen

scatsm

Dear Maria

So glad to hear from you and with such good news. 10 years is great! I am at 4 1/2 and would be thrilled for more time. I, too, am saddened by the losses of such wonderful women. Still, I'm glad to have come to know them through this board and others. I am most active on Sisterhood of Ovarian Cancer Survivors via Facebook. Maybe some of you who want more interactiom will gcheck it out as it is a very active site. 

ElzBelz

Mwee

That is such great news for you. Sounds like you fit the "This can be treated like a chronic disease"to a tee. Congrats and many more.

NoTimeForCancer

Maria, thank you for allowing

Maria, thank you for allowing us to celebrate your anniversary!  

I have a friend who's sister in law was diagnosed with OC, no idea what stage, she finished her treatment and would be curious on how much or what type of chemo you are gettinng monthly.  

Celebrate the date and cherish those you love.

lovesanimals

NoTimeForCancer said:

Maria, thank you for allowing

Maria, thank you for allowing us to celebrate your anniversary!  

I have a friend who's sister in law was diagnosed with OC, no idea what stage, she finished her treatment and would be curious on how much or what type of chemo you are gettinng monthly.  

Celebrate the date and cherish those you love.

Dearest Maria

Congratulations, dear Maria!  Thank you so much for checking in with us and sharing the latest chapter of your inspirational story.  I've been wondering about you and other teal sisters, especially with the recent passing of Alexandra.  I'm so glad that you are continuing to manage OC and live a meaningful life.

Warmly,

Kelly

 

Mwee

Thank you, dear sisters

I often hesitate  bring up the subject of OVCA becoming a chronic disease for some of us because I don't like to scare newly diagnosed sisters or ones who have reached NED. We all know that at whatever stage we are in this journey, we worry about what is next. I remember when I first had chemo after surgery and thought I'd never get through it. Now it's just part of my life. I'm not going to say it's easy, but it's like I have any other chronic disease that needs continual treatments. My youngest granddaughter was born while I was having my original surgery and she will be 10 in a couple of weeks! I am so very lucky... I never imagined that I would be around and able to enjoy life 10 years later. That is why I think it's important that we talk about the "what ifs" that creep into our heads. Thank you all for all you do. I joined the sisterhood site on Facebook... Thanks, Sue... Hugs, Maria

kikz

Mwee said:

Thank you, dear sisters

I often hesitate  bring up the subject of OVCA becoming a chronic disease for some of us because I don't like to scare newly diagnosed sisters or ones who have reached NED. We all know that at whatever stage we are in this journey, we worry about what is next. I remember when I first had chemo after surgery and thought I'd never get through it. Now it's just part of my life. I'm not going to say it's easy, but it's like I have any other chronic disease that needs continual treatments. My youngest granddaughter was born while I was having my original surgery and she will be 10 in a couple of weeks! I am so very lucky... I never imagined that I would be around and able to enjoy life 10 years later. That is why I think it's important that we talk about the "what ifs" that creep into our heads. Thank you all for all you do. I joined the sisterhood site on Facebook... Thanks, Sue... Hugs, Maria

I am

a member of Sisterhood of Ovarian Cancer Survivors as are several other ladies from this board.  I am Karen Shurden.  I'll look for you, Maria.

Karen

Jodisgoing180

Thank-you!

I am newly diagnosed. I had my debulking/hysterectomy over a month ago. I'm now getting chemotherapy (first round last Friday).  Though, my doctor has been mostly positive-- 80% chance of 5 year remission), it helps seeing people NED or dealing with it chronically. I'm 40 with young kids, so I need to hear this rather than survival rates. I did get good news my last appointment-- he said ai made it through the toughest part. 

Carrot358

Mwee said:

Thank you, dear sisters

I often hesitate  bring up the subject of OVCA becoming a chronic disease for some of us because I don't like to scare newly diagnosed sisters or ones who have reached NED. We all know that at whatever stage we are in this journey, we worry about what is next. I remember when I first had chemo after surgery and thought I'd never get through it. Now it's just part of my life. I'm not going to say it's easy, but it's like I have any other chronic disease that needs continual treatments. My youngest granddaughter was born while I was having my original surgery and she will be 10 in a couple of weeks! I am so very lucky... I never imagined that I would be around and able to enjoy life 10 years later. That is why I think it's important that we talk about the "what ifs" that creep into our heads. Thank you all for all you do. I joined the sisterhood site on Facebook... Thanks, Sue... Hugs, Maria

So good to be with you.

Maria, thank you for writing.  I came to check out the site tonight because I was feeling so different from my (very wonderful) cancer free friends.  Does that sound strange?  I wanted to hang out with some people who get it.  I was diagnosed with ovarian carsinosarcoma 3c last fall.  had surgery, just finished six rounds of chemo.  Will go for a check 6weeks from the end of chemo.  I am trying to keep "I had" cancer in my head.  No small feat!  Maybe when I no longer have a bald head and the effects of chemo are decreased that will be easier to do...  Of course then it will be time to return for the scan, etc!  Maria, if you would talk more about where you get your monthly treatment, what it is and how your md decided to go that route, I'd like to hear.  The carsinosarcoma adds a unique twist to mine, only 200 women in the US are diagnosed with this a year.  As for bald heads, I like mine!  And I love the response of young children, they often want me to take whatever I have on my head off.  I can see people soften and become more generous in my direction when they notice.  I'm thinking I'm ready for hair now though to take the focus off of cancer.  So good to be with all of you.  The Facebook suggestion might be the thing that moves me to get on facebook.  Thank you for that. And all of that each of you brings to our conversation.

Mwee

Carrot358 said:

So good to be with you.

Maria, thank you for writing.  I came to check out the site tonight because I was feeling so different from my (very wonderful) cancer free friends.  Does that sound strange?  I wanted to hang out with some people who get it.  I was diagnosed with ovarian carsinosarcoma 3c last fall.  had surgery, just finished six rounds of chemo.  Will go for a check 6weeks from the end of chemo.  I am trying to keep "I had" cancer in my head.  No small feat!  Maybe when I no longer have a bald head and the effects of chemo are decreased that will be easier to do...  Of course then it will be time to return for the scan, etc!  Maria, if you would talk more about where you get your monthly treatment, what it is and how your md decided to go that route, I'd like to hear.  The carsinosarcoma adds a unique twist to mine, only 200 women in the US are diagnosed with this a year.  As for bald heads, I like mine!  And I love the response of young children, they often want me to take whatever I have on my head off.  I can see people soften and become more generous in my direction when they notice.  I'm thinking I'm ready for hair now though to take the focus off of cancer.  So good to be with all of you.  The Facebook suggestion might be the thing that moves me to get on facebook.  Thank you for that. And all of that each of you brings to our conversation.

Hi "Carrot" cute screen name

I first found this site about three years after I was diagnosed. It was quite an active site at that time and finding others that understood and could help me feel that I wasn't alone on this journey was life changing. I'm so very happy to pay forward for all those kindnesses. I receive my chemo at my Onc's office in the infusion room. I've been told that treatments are chosen according to what is found to be effective on the cell type during biopsy. For many of us, a carbo/taxol combo is the first drug combo given. Is there anything else I might be able to help with? 

rejoycew

Carrot358 said:

So good to be with you.

Maria, thank you for writing.  I came to check out the site tonight because I was feeling so different from my (very wonderful) cancer free friends.  Does that sound strange?  I wanted to hang out with some people who get it.  I was diagnosed with ovarian carsinosarcoma 3c last fall.  had surgery, just finished six rounds of chemo.  Will go for a check 6weeks from the end of chemo.  I am trying to keep "I had" cancer in my head.  No small feat!  Maybe when I no longer have a bald head and the effects of chemo are decreased that will be easier to do...  Of course then it will be time to return for the scan, etc!  Maria, if you would talk more about where you get your monthly treatment, what it is and how your md decided to go that route, I'd like to hear.  The carsinosarcoma adds a unique twist to mine, only 200 women in the US are diagnosed with this a year.  As for bald heads, I like mine!  And I love the response of young children, they often want me to take whatever I have on my head off.  I can see people soften and become more generous in my direction when they notice.  I'm thinking I'm ready for hair now though to take the focus off of cancer.  So good to be with all of you.  The Facebook suggestion might be the thing that moves me to get on facebook.  Thank you for that. And all of that each of you brings to our conversation.

greetings

I am just now joining as I find I am needing support.  I was diagnosed in Aug 2015 following a failed cleansing  preparing for a colonoscopy.  I had 2 chemo treatment then emergency surgery for a colon obstruction resulting in the debulking of the obvious tumors.  I finished the 6th chemo early in Feb.  My CA125 numbers in March were a disappointing 58.6, still not down to the 30 normal range. I should be happy because it is going in the right direction started at 1500.   The plan now is to retest in a month and have a colonoscopy which is scheduled for tomorrow.  I am nervous about the colonoscopy as my previous unsuccessful prep resulted in an obstuction or brought to light an obstuction.  I am trying to be positive and reading your entries to this blog has helped.   Also wondering if hair goes faster with a convered head or au natureal.  Just wondering what your experiences are with hair growth.  I am growing tired of scarves, caps, and my wonderful wig compliments of American Cancer Society.  Any further advice?

 

EZLiving66

rejoycew said:

greetings

I am just now joining as I find I am needing support.  I was diagnosed in Aug 2015 following a failed cleansing  preparing for a colonoscopy.  I had 2 chemo treatment then emergency surgery for a colon obstruction resulting in the debulking of the obvious tumors.  I finished the 6th chemo early in Feb.  My CA125 numbers in March were a disappointing 58.6, still not down to the 30 normal range. I should be happy because it is going in the right direction started at 1500.   The plan now is to retest in a month and have a colonoscopy which is scheduled for tomorrow.  I am nervous about the colonoscopy as my previous unsuccessful prep resulted in an obstuction or brought to light an obstuction.  I am trying to be positive and reading your entries to this blog has helped.   Also wondering if hair goes faster with a convered head or au natureal.  Just wondering what your experiences are with hair growth.  I am growing tired of scarves, caps, and my wonderful wig compliments of American Cancer Society.  Any further advice?

 

It seems like hair growth is

It seems like hair growth is different for everybody.  Yesterday was 13 weeks since my last chemo and my hair just started to grow back with a bald spot on the top of my head.  Others have said their hair started to grow after about three weeks but came in fine and curly.  Mine is stick straight and wirey and pure white.  I just bought a couple of shorter wigs for summer because I don't think I'm going to have much hair and what I will have will be sticking straight out of my head like "Doc" Brown from Back to the Future! 

Love,

Eldri

Carrot358

Mwee said:

Hi "Carrot" cute screen name

I first found this site about three years after I was diagnosed. It was quite an active site at that time and finding others that understood and could help me feel that I wasn't alone on this journey was life changing. I'm so very happy to pay forward for all those kindnesses. I receive my chemo at my Onc's office in the infusion room. I've been told that treatments are chosen according to what is found to be effective on the cell type during biopsy. For many of us, a carbo/taxol combo is the first drug combo given. Is there anything else I might be able to help with? 

Ongoing chemo

The name "carrot" is one of my many childhood nicknames, I have/had red hair.  It makes me smile.  Prematurely, or constantly, or both, I am Getting ready for the next possible plan of action.  I haven't quite relaxed into, "it's gone!".   Because I have never heard of getting chemo the way you are getting it I was wordering both what the chemo is that you continue to get and where, on the planet (name of your treatment center), you are being treated.  I have two ports, abdominal and vein.  Got cisplatin and taxol in both.  When the damage to my kidneys started, after three rounds, they stopped the abdominal and changed to carboplatin.  Then I got both in the venous port.  I also got neulasta, very helpful for building wbc count.  It would be great to hear from the women who were here when you joined.  I'm glad they were here for you.

Carrot358

Mwee said:

Thank you, dear sisters

I often hesitate  bring up the subject of OVCA becoming a chronic disease for some of us because I don't like to scare newly diagnosed sisters or ones who have reached NED. We all know that at whatever stage we are in this journey, we worry about what is next. I remember when I first had chemo after surgery and thought I'd never get through it. Now it's just part of my life. I'm not going to say it's easy, but it's like I have any other chronic disease that needs continual treatments. My youngest granddaughter was born while I was having my original surgery and she will be 10 in a couple of weeks! I am so very lucky... I never imagined that I would be around and able to enjoy life 10 years later. That is why I think it's important that we talk about the "what ifs" that creep into our heads. Thank you all for all you do. I joined the sisterhood site on Facebook... Thanks, Sue... Hugs, Maria

chronic

Just started laughing to myself about chronic being so much better than dead!  Tooooo many cancer free, or cancer free today, people keep throwing the "stay positive" thing at me.  I am currently better at staying angry.  Rigid positive just isn't going to work for me.  Probably really doesn't for anyone.

I reread your email, Marie, after I had the "chronic vs dead" thought And saw your reluctance to write.  I hope you keep writing.  It is what it is for each one of us, as we each do battle in our own way.

 

 

Missjessicalyn

Carrot358 said:

So good to be with you.

Maria, thank you for writing.  I came to check out the site tonight because I was feeling so different from my (very wonderful) cancer free friends.  Does that sound strange?  I wanted to hang out with some people who get it.  I was diagnosed with ovarian carsinosarcoma 3c last fall.  had surgery, just finished six rounds of chemo.  Will go for a check 6weeks from the end of chemo.  I am trying to keep "I had" cancer in my head.  No small feat!  Maybe when I no longer have a bald head and the effects of chemo are decreased that will be easier to do...  Of course then it will be time to return for the scan, etc!  Maria, if you would talk more about where you get your monthly treatment, what it is and how your md decided to go that route, I'd like to hear.  The carsinosarcoma adds a unique twist to mine, only 200 women in the US are diagnosed with this a year.  As for bald heads, I like mine!  And I love the response of young children, they often want me to take whatever I have on my head off.  I can see people soften and become more generous in my direction when they notice.  I'm thinking I'm ready for hair now though to take the focus off of cancer.  So good to be with all of you.  The Facebook suggestion might be the thing that moves me to get on facebook.  Thank you for that. And all of that each of you brings to our conversation.

Hi Carrot,
I also have/had

Hi Carrot,

I also have/had ovarian carcinosarcoma, and also just finished my 6th round of carbo/taxol. And I am in the same position you are, wondering what more I can do. I've read that monthly Avastin treatments prolong survival time, but my oncologist won't do it. He says that the studies don't show that Avastin actually improves one's chances of overall survival, it just prolongs recurrence by about 4 months. I'm thinking about shopping for a new oncologist. I just don't feel good about doing nothing after chemo. Especially knowing the historically poor prognosis for carcinosarcoma. my last treatment was a week ago today, and I know I need to do some research and make decisions. I'd love to know if you've learned of any post-chemo options, or if anyone else has any advice i would love to hear it.  

Carrot358

Missjessicalyn said:

Hi Carrot,
I also have/had

Hi Carrot,

I also have/had ovarian carcinosarcoma, and also just finished my 6th round of carbo/taxol. And I am in the same position you are, wondering what more I can do. I've read that monthly Avastin treatments prolong survival time, but my oncologist won't do it. He says that the studies don't show that Avastin actually improves one's chances of overall survival, it just prolongs recurrence by about 4 months. I'm thinking about shopping for a new oncologist. I just don't feel good about doing nothing after chemo. Especially knowing the historically poor prognosis for carcinosarcoma. my last treatment was a week ago today, and I know I need to do some research and make decisions. I'd love to know if you've learned of any post-chemo options, or if anyone else has any advice i would love to hear it.  

Carcinosarcoma

Hi Missjessicalyn,  

So good to meet you.  There is another woman that I have met on this list with the same dx.  She is further "out" than we are and doing well.  Hurray!  my last chemo was just two weeks ago today.  My current efforts are toward staying in the day, this one that any one of has and the only one we know that we have, eating better so my body's work to stay healthy is not so hard, walking every day, seeing a network chiropractor and acupuncturist to help with the neuropathy and detoxing, taking a mushroom capsule and curcumin with Bioprine.  I am trying to decide about going back for the 6 week check.  My MD, whom I like very much, says I can wait for a symptom (I never had any to begin with, just felt a mass in my abdomen) or go with what the tests show, either way my life won't be longer I'll just have had more life with chemo if I start when the tests show it is there!?  I'm not interested in a zillion things that are hard on the body and don't really improve or prolong my life.  i might go to California and try marijuana, not symptomatic but for cure.  And there is absolutely nothing that says that will work.  Back to living the best way I can and working to stay in th moment!  I will let you know if I learn anything new and will look for your news too.  Thank you for writing.

Mwee

Carrot358 said:

Ongoing chemo

The name "carrot" is one of my many childhood nicknames, I have/had red hair.  It makes me smile.  Prematurely, or constantly, or both, I am Getting ready for the next possible plan of action.  I haven't quite relaxed into, "it's gone!".   Because I have never heard of getting chemo the way you are getting it I was wordering both what the chemo is that you continue to get and where, on the planet (name of your treatment center), you are being treated.  I have two ports, abdominal and vein.  Got cisplatin and taxol in both.  When the damage to my kidneys started, after three rounds, they stopped the abdominal and changed to carboplatin.  Then I got both in the venous port.  I also got neulasta, very helpful for building wbc count.  It would be great to hear from the women who were here when you joined.  I'm glad they were here for you.

Hi Carrot

I've written you several long replies, just to have my IPad freeze up. I'll get on my computer later and see how that does:)

Missjessicalyn

Carrot358 said:

Carcinosarcoma

Hi Missjessicalyn,  

So good to meet you.  There is another woman that I have met on this list with the same dx.  She is further "out" than we are and doing well.  Hurray!  my last chemo was just two weeks ago today.  My current efforts are toward staying in the day, this one that any one of has and the only one we know that we have, eating better so my body's work to stay healthy is not so hard, walking every day, seeing a network chiropractor and acupuncturist to help with the neuropathy and detoxing, taking a mushroom capsule and curcumin with Bioprine.  I am trying to decide about going back for the 6 week check.  My MD, whom I like very much, says I can wait for a symptom (I never had any to begin with, just felt a mass in my abdomen) or go with what the tests show, either way my life won't be longer I'll just have had more life with chemo if I start when the tests show it is there!?  I'm not interested in a zillion things that are hard on the body and don't really improve or prolong my life.  i might go to California and try marijuana, not symptomatic but for cure.  And there is absolutely nothing that says that will work.  Back to living the best way I can and working to stay in th moment!  I will let you know if I learn anything new and will look for your news too.  Thank you for writing.

Curcumin/Mushroom supplements

Hi Carrot,

Great to hear from you! Do you mind if I ask where you get your supplements and which brand you use? I believe it would be best for me to start taking them as well. I have a check next week - CT scan and CA125 - just to get a baseline after chemo I guess. I am nervous about the results - terrified that my CA125 will immediately start climbing - but I'm hoping obviously for good results, and that good results will enable me to relax a bit. Until the next scan

 

NoTimeForCancer

Missjessicalyn said:

Hi Carrot,
I also have/had

Hi Carrot,

I also have/had ovarian carcinosarcoma, and also just finished my 6th round of carbo/taxol. And I am in the same position you are, wondering what more I can do. I've read that monthly Avastin treatments prolong survival time, but my oncologist won't do it. He says that the studies don't show that Avastin actually improves one's chances of overall survival, it just prolongs recurrence by about 4 months. I'm thinking about shopping for a new oncologist. I just don't feel good about doing nothing after chemo. Especially knowing the historically poor prognosis for carcinosarcoma. my last treatment was a week ago today, and I know I need to do some research and make decisions. I'd love to know if you've learned of any post-chemo options, or if anyone else has any advice i would love to hear it.  

Missjessicalyn, a friend of

Missjessicalyn, a friend of mine with recurrent UPSC, aggressive like ovarian, is on Avastin.  It is expensive, but she is ok so far.  She said her CA125 is rising, which worries her, but she is going to keep trying!