I hope that so few new posts indicate a low incidence in our community!

willendorf

Mary1024 said:

Thanks Jenn
Much to my relief CTCA didn't recommend surgery. They said surgery is only done when the cancer is localized, once it's spread that option is off the table.

The Dr at CTCA recommended Avastin to try and stabilize the tumors. She said that this chemo has light side effects, is much easier on the body. So I said yes and recieved my first infusion last Thursday. The way she described it is that the tumor in the vagina will not only get bigger, but will burrow it's way into all the surrounding structures (ie: rectum, urethra, etc.) creating fistulas, which would cause lots of problems.

It was still a hard choice to make. My Dr, is a cancer surivor herself, so she understands the issues first hand.

So far the side effects of Avastin have been dry mouth, exessive thirst, pain/rawness in mouth and tongue, fatigue, headache, nausea, and itching from head to toe. Not too bad compared to Cisplatin, Carboplatin and Taxol. Dr guess-timates that I have 6-12 months, but stressed that was just a guess - they have no way of knowing for sure.

Joining your convo...sharing support
Hi Mary,

I wanted to reach out to you as I read through your posts, it's been awhile since I have been on but I was struck by your them. My partner had a different cancer; large cell neuroendocrine carnoid, but had the same chemo treatment plan it sounded like you have had. She had two rounds of chemo, but got an allergic reaction to the carbo platin during the second round. She also did two rounds of radiation after the chemo. Melissa died December 29, 2011, after some complications with her lungs due to the second round of radiation. I wish I could say something perfect and right but you know that it isn't always there...do know that you are supported by people who don't even know you who are sending love and goodness to you. I saw her live through treatment and was with her until her last moments so I have some understanding of what you are dealing with, though that's easy for me to say as I was the one without the fatal disease... I can understand where your partner is, too. We were madly in love, and living in a house in her name. I am making an offer on a new house this weekend. Such a mixture of sadness and excitement.

Doctors don't always know everything but neither do we. The only thing I know is what love is and what it means in life. Love each other as best you can cuz this could be the only life we get. Real love gets through even the yuckiest stuff and here's the test. ALL of my love is going to you and yours....

Peace and goodness,
Jill

Mary1024

willendorf said:

Joining your convo...sharing support
Hi Mary,

I wanted to reach out to you as I read through your posts, it's been awhile since I have been on but I was struck by your them. My partner had a different cancer; large cell neuroendocrine carnoid, but had the same chemo treatment plan it sounded like you have had. She had two rounds of chemo, but got an allergic reaction to the carbo platin during the second round. She also did two rounds of radiation after the chemo. Melissa died December 29, 2011, after some complications with her lungs due to the second round of radiation. I wish I could say something perfect and right but you know that it isn't always there...do know that you are supported by people who don't even know you who are sending love and goodness to you. I saw her live through treatment and was with her until her last moments so I have some understanding of what you are dealing with, though that's easy for me to say as I was the one without the fatal disease... I can understand where your partner is, too. We were madly in love, and living in a house in her name. I am making an offer on a new house this weekend. Such a mixture of sadness and excitement.

Doctors don't always know everything but neither do we. The only thing I know is what love is and what it means in life. Love each other as best you can cuz this could be the only life we get. Real love gets through even the yuckiest stuff and here's the test. ALL of my love is going to you and yours....

Peace and goodness,
Jill

Latest Update
Dear Jill,

Thank you for the love and concern you are sending our way. I'm so incredibly lucky to have a partner who is by my side come what may, as well as family support from both sides. I'm so sorry for your loss. Your partner undoubtedly wants you to have the best life and boundless happiness. So, never feel bad when are able to laugh and enjoy life!

This morning I'll have my third Avastin infusion. I have no idea if it's working, other than my tumor marker being down a bit. However I've been told that markers are not a reliable way to tell if the chemo is doing the job. I'll definately be asking how many more treatments until we know with certainty if chemotherapy is making any difference.

I'm on unpaid medical leave from my job. Which means I'm an employee in name only. I don't draw any type of pay, however they still provide insurance coverage for up to a year. My partner injured her shoulder so she's been off on medical leave as well, leaving us in the red.

I went to the Illinois Dept. of Human Services to see if I qualify for any type of assistance. Looks like I can get some food stamps. They also advised me to apply for Social Security Disability, and said that if I get approved for SSID that I may be eligible for other types of help. There is no reason to feel ashamed, but I do.

My boss had previously offered a vacation to my partner and I - anywhere we wanted to go in the U.S. She also offered some other assistance. After the 3 time she offered, we accepted. Now the time is at hand and she will not return my emails. I only accepted because SHE was insistant. We were so excited. We also saw a lot of "friends" dissappear. You certainly know who your true friends are when facing a terminal illness.

Julie061

Mary1024 said:

Latest Update
Dear Jill,

Thank you for the love and concern you are sending our way. I'm so incredibly lucky to have a partner who is by my side come what may, as well as family support from both sides. I'm so sorry for your loss. Your partner undoubtedly wants you to have the best life and boundless happiness. So, never feel bad when are able to laugh and enjoy life!

This morning I'll have my third Avastin infusion. I have no idea if it's working, other than my tumor marker being down a bit. However I've been told that markers are not a reliable way to tell if the chemo is doing the job. I'll definately be asking how many more treatments until we know with certainty if chemotherapy is making any difference.

I'm on unpaid medical leave from my job. Which means I'm an employee in name only. I don't draw any type of pay, however they still provide insurance coverage for up to a year. My partner injured her shoulder so she's been off on medical leave as well, leaving us in the red.

I went to the Illinois Dept. of Human Services to see if I qualify for any type of assistance. Looks like I can get some food stamps. They also advised me to apply for Social Security Disability, and said that if I get approved for SSID that I may be eligible for other types of help. There is no reason to feel ashamed, but I do.

My boss had previously offered a vacation to my partner and I - anywhere we wanted to go in the U.S. She also offered some other assistance. After the 3 time she offered, we accepted. Now the time is at hand and she will not return my emails. I only accepted because SHE was insistant. We were so excited. We also saw a lot of "friends" dissappear. You certainly know who your true friends are when facing a terminal illness.

Hope you are hanging in there.
Hello Mary,

You haven't posted in several months. If you are still fighting, I wanted to talk to you about CTCA. I have been a patient there since 2007.

Prayers to you.

Julie

Mary1024

Julie061 said:

Hope you are hanging in there.
Hello Mary,

You haven't posted in several months. If you are still fighting, I wanted to talk to you about CTCA. I have been a patient there since 2007.

Prayers to you.

Julie

No more Chemo for me
Hi Julie,

Yes, I'm still here and fighting! I'm a patient at CTCA in Zion IL. I can only go by my experience, but I would recommend CTCA to anyone. I see Dr. SybilAnn Williams and she is great. I Think I'm a bit different from most of the CTCA patients - I'm no longer hoping that chemo will cure my cancer. Now, I'm looking for a good quality of life and some more time. My Dr always tries to talk me into aggressive therapy, but she also respects my decisions. I'm no longer on Avastin, Dr wanted to try Doxil (no way!) - after I told her that I didn't want further chemo, she suggested I try hormonal therapy. That avenue seems worth the benefit/risk ratio.

I've been having some bouts with sleep walking, will hold conversations, and the most troubling thing - I was taking medications while asleep - my partner caught me before I took several pills. We now keep the meds out of my reach when I'm suppossed to be asleep. It's been several days now and I'm feeling much better. We also had an MRI of the brain, which was clear. I'm guessing it's all due to stress.

I've applied for social security disability - a very nice lady at the SSI office said that she would fast track my application, but it would still be months before I receive anything. I've applied for what benefits I can. I have zero income and my home is in foreclosure - oh well - I'm sure there are lots of us in the same boat.

Hope everyone is doing good.

Julie061

Mary1024 said:

No more Chemo for me
Hi Julie,

Yes, I'm still here and fighting! I'm a patient at CTCA in Zion IL. I can only go by my experience, but I would recommend CTCA to anyone. I see Dr. SybilAnn Williams and she is great. I Think I'm a bit different from most of the CTCA patients - I'm no longer hoping that chemo will cure my cancer. Now, I'm looking for a good quality of life and some more time. My Dr always tries to talk me into aggressive therapy, but she also respects my decisions. I'm no longer on Avastin, Dr wanted to try Doxil (no way!) - after I told her that I didn't want further chemo, she suggested I try hormonal therapy. That avenue seems worth the benefit/risk ratio.

I've been having some bouts with sleep walking, will hold conversations, and the most troubling thing - I was taking medications while asleep - my partner caught me before I took several pills. We now keep the meds out of my reach when I'm suppossed to be asleep. It's been several days now and I'm feeling much better. We also had an MRI of the brain, which was clear. I'm guessing it's all due to stress.

I've applied for social security disability - a very nice lady at the SSI office said that she would fast track my application, but it would still be months before I receive anything. I've applied for what benefits I can. I have zero income and my home is in foreclosure - oh well - I'm sure there are lots of us in the same boat.

Hope everyone is doing good.

Dr Williams;)
Hey Mary,

I hope this finds you having a good day. Dr Williams performed my radical hysterectomy in 2007. She is such a kind and gentle physician, and is an amazing person. I have been going to CTCA Zion since 2007. My cancer originated in my appendix in 2004. CTCA saved my life in 2007, I now have a gold leaf on their tree!

My last round of chemo included Avastin, I didn't have as many side effects as you did. My insurance company denied payment for it, said it was experimental, so I applied to Genentech and they will cover any of their drugs I take in the future 100%.

I applied for SSD last year when the side effects of treatment inhibited my effectiveness at work. I worked through the first two rounds of surgery & chemo in 2004; and then surgery, radiation & chemo in 2007. For me, it was just too hard to fight my cancer mets, now an incurable stage, while still working. SSD approved my claim in 2 weeks. I think my first check came within a month. It was extremely fast and an easy process. CTCA does a great job completing their part of the paperwork.

See if your natural path has any suggestions for sleeping. It is great to have such a fantastic team on your side.

I am very sorry to hear that your home is in foreclosure. Like you need that stress right now especially;( Through the years, my financial status has been like a roller coaster ride. It is a shame that cancer can ruin so many people financially. They have cancer insurance, but who has the foresight or the extra money to purchase it;)

I hope you are able to find a resource for financial help. If I see anything, I will certainly send it your way.

I will be at CTCA on 8-8/9 for my 3-month scans (Great results;) nodules stable and CEA 2.3!!). Could be that I may run into you sometime. I am originally from IL and visit family when I go to the hospital.

Take care and hopefully talk again soon. You will both be in my prayers.