Hello and Thank You
Rookerbird
Member Posts: 100
Ladies of the boards -
First, thank you for participating in discussions that benefit not only the active members, but also those who find the boards while Googling for answers to our cancer questions.
Second, I think your active support of one another is fantastic! Seeing your encouragement to one another indirectly encourages me when I feel "beaten" by cancer.
My diagnosis was in August 2009, and I have been in active treatment since then. And checking in on your boards since then. But, I haven't joined a support group (either in person or online) for a number of reasons.
#1 - Time limitations. I love my job, plus need my income. So, I've continued working throughout treatment. Fortunately, I have great bosses, and the flexibility to work from home at times. But nearly 100% of my time is split between tending to medical needs and work needs, and I don't have a lot of time to contribute to this caring community.
#2 - Strong support network. Church, family and friends have encouraged me and provided needed care every step of the way, including meals, rides, help with house and yard maintenance, and more.
#3 - Not wanting to admit that I'm seriously sick. I've tried to keep my focus in the present, and get through each small step with the belief that my health will be restored. Although visiting the boards is a great help, sometimes the experiences of others overwhelms me and scares me. Is my illness truly chronic? Will I be in treatment of some sort for the rest of my life? Don't wanna go there...
Here's my story. I'm happy to answer questions if my experiences might ease the way for anyone.
8/2009: Had just turned 50. After months of heavy bleeding, which I thought was a pre-menopausal issue, went in for an ultrasound. Tumor on my left ovary.
9/2009: Referral to wonderful gyn/onc here in Dallas. Complete hysterectomy and debulking surgery. Synchronous primary tumors. Endometrial carcinoma staged IC. Ovarian carcinoma (high-grade without specific differentiation, most likely serous) staged IIC. Because of this double diagnosis, I bounce back and forth between the uterine board and the ovarian board.
10/2009 - 1/2010: Six rounds of Taxol/Carboplatin. Had severe allergic reaction to sixth Carbo infusion.
2/2010: Follow-up CT showed new nodules (growths) since surgery. PT scan indicated malignancy. Disease progression during chemo...blech. Broke my right ankle in 12 inches of snow, and could not drive for more than 2 months. Never have I felt so helpless yet so loved, as a multitude of people drove me to work, to daily radiation, to lab and doctor appointments, etc.
3/2010 - 4/2010: Daily pelvic radiation (IMRT) for 6 weeks. Follow-up CT showed two nodules were stable.
5/2010 - 7/2010: Tried Femara as a maintenance drug. My doctor also gave me the choices of monthly Taxol maintenance or "wait and see." I wanted a break from chemo (and wanted to give my out-of-town family a break from frequent caretaker visits). Discontinued Femara after several months due to joint pain. CT in July showed two nodules were stable.
8/2010: I had one month with minimal discomfort and NO treatment...woohoo!
9/2010: Started having severe back pain. Doctor ordered MRI in September to rule out bone metastasis. Degenerative disc disease (plus aftermath of being in a cast or walking boot for months) was the radiologist's diagnosis. I began physical therapy for my back.
10/2010 - 11/2010: Back pain continued. Could hardly walk at times, and began taking hydrocodone 24/7. Physical therapy wasn't helping, and my CA-125 (checked monthly) was creeping up. My doctor ordered another CT scan. It showed development of a large (grapefruit-sized) cul-de-sac mass (or possibly two adjacent masses) pressing on my sciatic nerve. There was major growth since the July CT scan. A CT-guided biopsy indicated "metastatic epithelial clear cell adenocarcinoma." Clear cell is evidently ugly...haven't wanted to delve into that or learn more. I trust my doctor to tell me what I need to know.
My ob/gyn wanted me to go to MD Anderson for a second opinion, and got me in for an appointment in early December. This was interesting...my doctor sent MDA the specimens from my actual debulking, and MDA worked up their own pathology report.
A note about CA-125. The highest mine ever got (before surgery) was low 60s. This past fall, as the tumors were growing wildly, it crept up from 7.5 to only 14.1. Thank goodness my doctor was concerned about the trend and ordered another CT, even though my number was still within the normal range. It's interesting how CA-125 numbers can range so widely depending on the woman and the type of cancer.
12/2010: Per the OVCA specialist at MDA...Surgery is not a viable option. The radiation card has already been played. I’ve had a severe adverse reaction to carboplatin. That leaves a group of other chemo drugs to try. All of them have about the same success percentages with clear cell carcinoma. 15 – 20% of the time, the tumor remains stable or shrinks. 85 – 80% of the time, the tumor continues to grow. His top two choices for "next chemo" were Doxil then Taxotere.
I have been admitted to the MDA system, and can transfer there at any time. Or join a clinical trial at any time. But, the MDA doctor feels patients live longer if they remain in their normal environment and stay in their normal routine as much as possible. I really love my gyn/onc in Dallas, so he and and the MDA onc will collaborate on my treatment plan, but I'll be treated in Dallas.
12/2010 - 2/2011: Began Doxil. Game plan is to have 3 rounds, then a CT scan to re-assess. I have followed the Doxil "do and don't list" rigorously, and had minimal Doxil side effects. I wrap ice packs around both wrists and both ankles plus swallow ice chips during the entire infusion. The chemo nurses take their time and tri-rate (? - I can't recall the term) the drip. For 5 days after: cold shower, ice packs on palms of hands and soles of heet, no typing, no friction of any kind. Indefinitely: only gentle activities requiring hands/feet, cool foods/beverages, no hard or crunchy or salty or spicy foods, frequent use of Udder Cream or Eucerin lotion. Did have one bout of nausea after 2nd infusion, then mouth sores a week or so later. Salt/baking soda rinse and Magic Mouthwash cleared those up.
1/2011: The worst side effect? Horrible constipation from pain meds. I'd tried dietary helps plus Senokot-S, then tried Benefiber...but it just kept getting worse. Finally, I had such severe abdominal cramping that my doctor sent me to the ER to make sure the tumor hadn't caused a blockage. He and the ER physician ordered a heavy-duty pain killer via IV then an x-ray. It was constipation, not a blockage. After 7 hours of tests, they sent me home and switched me to Miralax. After a few days, that did the trick.
I am very hopeful that the Doxil is shrinking the tumors, because my pain level has dropped significantly. In the last month, I have gone from watching the clock, needing that next pill, to ZERO pain meds. My third Doxil infusion is scheduled for this week. Guessing I'll have my next CT in a month or so. Then, more decisions.
My apologies for this ridiculously long post. It's a year-and-a-half of "background info."
Thank you again to the active board participants who make this site a great resource. Here's to everyone's health and happiness!
First, thank you for participating in discussions that benefit not only the active members, but also those who find the boards while Googling for answers to our cancer questions.
Second, I think your active support of one another is fantastic! Seeing your encouragement to one another indirectly encourages me when I feel "beaten" by cancer.
My diagnosis was in August 2009, and I have been in active treatment since then. And checking in on your boards since then. But, I haven't joined a support group (either in person or online) for a number of reasons.
#1 - Time limitations. I love my job, plus need my income. So, I've continued working throughout treatment. Fortunately, I have great bosses, and the flexibility to work from home at times. But nearly 100% of my time is split between tending to medical needs and work needs, and I don't have a lot of time to contribute to this caring community.
#2 - Strong support network. Church, family and friends have encouraged me and provided needed care every step of the way, including meals, rides, help with house and yard maintenance, and more.
#3 - Not wanting to admit that I'm seriously sick. I've tried to keep my focus in the present, and get through each small step with the belief that my health will be restored. Although visiting the boards is a great help, sometimes the experiences of others overwhelms me and scares me. Is my illness truly chronic? Will I be in treatment of some sort for the rest of my life? Don't wanna go there...
Here's my story. I'm happy to answer questions if my experiences might ease the way for anyone.
8/2009: Had just turned 50. After months of heavy bleeding, which I thought was a pre-menopausal issue, went in for an ultrasound. Tumor on my left ovary.
9/2009: Referral to wonderful gyn/onc here in Dallas. Complete hysterectomy and debulking surgery. Synchronous primary tumors. Endometrial carcinoma staged IC. Ovarian carcinoma (high-grade without specific differentiation, most likely serous) staged IIC. Because of this double diagnosis, I bounce back and forth between the uterine board and the ovarian board.
10/2009 - 1/2010: Six rounds of Taxol/Carboplatin. Had severe allergic reaction to sixth Carbo infusion.
2/2010: Follow-up CT showed new nodules (growths) since surgery. PT scan indicated malignancy. Disease progression during chemo...blech. Broke my right ankle in 12 inches of snow, and could not drive for more than 2 months. Never have I felt so helpless yet so loved, as a multitude of people drove me to work, to daily radiation, to lab and doctor appointments, etc.
3/2010 - 4/2010: Daily pelvic radiation (IMRT) for 6 weeks. Follow-up CT showed two nodules were stable.
5/2010 - 7/2010: Tried Femara as a maintenance drug. My doctor also gave me the choices of monthly Taxol maintenance or "wait and see." I wanted a break from chemo (and wanted to give my out-of-town family a break from frequent caretaker visits). Discontinued Femara after several months due to joint pain. CT in July showed two nodules were stable.
8/2010: I had one month with minimal discomfort and NO treatment...woohoo!
9/2010: Started having severe back pain. Doctor ordered MRI in September to rule out bone metastasis. Degenerative disc disease (plus aftermath of being in a cast or walking boot for months) was the radiologist's diagnosis. I began physical therapy for my back.
10/2010 - 11/2010: Back pain continued. Could hardly walk at times, and began taking hydrocodone 24/7. Physical therapy wasn't helping, and my CA-125 (checked monthly) was creeping up. My doctor ordered another CT scan. It showed development of a large (grapefruit-sized) cul-de-sac mass (or possibly two adjacent masses) pressing on my sciatic nerve. There was major growth since the July CT scan. A CT-guided biopsy indicated "metastatic epithelial clear cell adenocarcinoma." Clear cell is evidently ugly...haven't wanted to delve into that or learn more. I trust my doctor to tell me what I need to know.
My ob/gyn wanted me to go to MD Anderson for a second opinion, and got me in for an appointment in early December. This was interesting...my doctor sent MDA the specimens from my actual debulking, and MDA worked up their own pathology report.
A note about CA-125. The highest mine ever got (before surgery) was low 60s. This past fall, as the tumors were growing wildly, it crept up from 7.5 to only 14.1. Thank goodness my doctor was concerned about the trend and ordered another CT, even though my number was still within the normal range. It's interesting how CA-125 numbers can range so widely depending on the woman and the type of cancer.
12/2010: Per the OVCA specialist at MDA...Surgery is not a viable option. The radiation card has already been played. I’ve had a severe adverse reaction to carboplatin. That leaves a group of other chemo drugs to try. All of them have about the same success percentages with clear cell carcinoma. 15 – 20% of the time, the tumor remains stable or shrinks. 85 – 80% of the time, the tumor continues to grow. His top two choices for "next chemo" were Doxil then Taxotere.
I have been admitted to the MDA system, and can transfer there at any time. Or join a clinical trial at any time. But, the MDA doctor feels patients live longer if they remain in their normal environment and stay in their normal routine as much as possible. I really love my gyn/onc in Dallas, so he and and the MDA onc will collaborate on my treatment plan, but I'll be treated in Dallas.
12/2010 - 2/2011: Began Doxil. Game plan is to have 3 rounds, then a CT scan to re-assess. I have followed the Doxil "do and don't list" rigorously, and had minimal Doxil side effects. I wrap ice packs around both wrists and both ankles plus swallow ice chips during the entire infusion. The chemo nurses take their time and tri-rate (? - I can't recall the term) the drip. For 5 days after: cold shower, ice packs on palms of hands and soles of heet, no typing, no friction of any kind. Indefinitely: only gentle activities requiring hands/feet, cool foods/beverages, no hard or crunchy or salty or spicy foods, frequent use of Udder Cream or Eucerin lotion. Did have one bout of nausea after 2nd infusion, then mouth sores a week or so later. Salt/baking soda rinse and Magic Mouthwash cleared those up.
1/2011: The worst side effect? Horrible constipation from pain meds. I'd tried dietary helps plus Senokot-S, then tried Benefiber...but it just kept getting worse. Finally, I had such severe abdominal cramping that my doctor sent me to the ER to make sure the tumor hadn't caused a blockage. He and the ER physician ordered a heavy-duty pain killer via IV then an x-ray. It was constipation, not a blockage. After 7 hours of tests, they sent me home and switched me to Miralax. After a few days, that did the trick.
I am very hopeful that the Doxil is shrinking the tumors, because my pain level has dropped significantly. In the last month, I have gone from watching the clock, needing that next pill, to ZERO pain meds. My third Doxil infusion is scheduled for this week. Guessing I'll have my next CT in a month or so. Then, more decisions.
My apologies for this ridiculously long post. It's a year-and-a-half of "background info."
Thank you again to the active board participants who make this site a great resource. Here's to everyone's health and happiness!
0
Comments
-
Don't apologize
I am glad you found this board. It was a godsend for me when I found it. I was scared and nobody I knew had experienced ovca. Although my family and friends were magnificent, they could not really understand what I was going through. It is an ordeal to say the least. I am astounded by the knowledge a lot of the women on this board have about the disease and I am sure they will chime in with advice that will help you. For me what I have gotten from these miraculous women is support. That is what I have needed most through this time. When I am down, scared or downright angry, there is always someone who will make me feel better. And thankfully there are times when I want to share good news and that is applauded. Be strong as I believe only women can be. You have friends here who will listen anytime and feel free to express yourself because we will listen.
Karen0 -
welcome..... no apologies necessary
as always meeting under these circumstances is not what we would choose, but it's so nice to meet you. I'm glad to hear that your pain level is down and wish you the best with the doxil. I also suffer from extreme constipation with chemo.
((((HUGS)))) Maria0 -
Hello and Thank You
Thank you so much, Karen and Maria. Hugs and blessings to all.0 -
Hello and welcomeRookerbird said:Hello and Thank You
Thank you so much, Karen and Maria. Hugs and blessings to all.
Nice to meet you. I tyhink you will enjoy this board and find lots of info and great advice. Hope you are feeling well. Stay stron..val0 -
Optional chemo
Just wondering if you were given the option of using Torisel? It's used for kidney clear cell tumors & has shown benefit for OVCA clear cell.0 -
Torisel?LaundryQueen said:Optional chemo
Just wondering if you were given the option of using Torisel? It's used for kidney clear cell tumors & has shown benefit for OVCA clear cell.
Hi LaundryQueen - tell me more! MDA onc and my Dallas onc listed the following drugs to try next, in order of preference:
Doxil
Toxotere
Topotecan
Gemzar
Of course, that was based on circumstances as of Dec 2010, and things can always change. My last CT showed tumor shrinkage, but my CA-125 is on an upward trend, so we're looking ahead. I will ask about Torisel. Wonder if it's insurance-approved in Texas for ovarian cancer.
- Kathy0 -
Thanks!pattysoo said:Welcome
Cool hat photo.
I'm glad you posted to this board and hope you find it to be useful when you need it. Thanks for sharing.
Thanks Betty, Patty and All - This board has been a tremendous help! Wonderful women!
The photo was taken at my office. The first day I wore a hat after losing my hair, one of my coworkers alerted others to wear hats too. What could have been a self-conscious day became a silly, goofy day.
0 -
OptionsRookerbird said:Torisel?
Hi LaundryQueen - tell me more! MDA onc and my Dallas onc listed the following drugs to try next, in order of preference:
Doxil
Toxotere
Topotecan
Gemzar
Of course, that was based on circumstances as of Dec 2010, and things can always change. My last CT showed tumor shrinkage, but my CA-125 is on an upward trend, so we're looking ahead. I will ask about Torisel. Wonder if it's insurance-approved in Texas for ovarian cancer.
- Kathy
Kathy
I really don't have much info on the Torisel except for reading (somewhere) one woman's successful experience with it for ovarian clear cell. Platinum drugs are usually ineffective against clear cell yet it seems like the oncologists still want to give the platinum chemo a try before going on to someting else. Clear cell seems to be in a different category than the other OVCAs and has similarities to kidney clear cell.
I don't know if anyone has thought of doing "intercurrent" treatment which is to say to give one chemo for a couple of rounds then switch to another chemo for a couple of rounds then back to the first chemo and so on. Since cancer is always trying to change to resist treatment, that would REALLY confuse the cancer!
I have been reading up on clear cell because I recently met a women through my oncologist who has it and she has been on several different chemos but has not tried the Torisel yet. Since it is one of the rare types, it must be hard to do enroll enough women in a clinical trial for just clear cell. You might have to fight with the insurance to get it paid for if you can convince anyone to try it on you.
Please keep us posted. We love to hear from you.0 -
You've Given Me Lots to PonderLaundryQueen said:Options
Kathy
I really don't have much info on the Torisel except for reading (somewhere) one woman's successful experience with it for ovarian clear cell. Platinum drugs are usually ineffective against clear cell yet it seems like the oncologists still want to give the platinum chemo a try before going on to someting else. Clear cell seems to be in a different category than the other OVCAs and has similarities to kidney clear cell.
I don't know if anyone has thought of doing "intercurrent" treatment which is to say to give one chemo for a couple of rounds then switch to another chemo for a couple of rounds then back to the first chemo and so on. Since cancer is always trying to change to resist treatment, that would REALLY confuse the cancer!
I have been reading up on clear cell because I recently met a women through my oncologist who has it and she has been on several different chemos but has not tried the Torisel yet. Since it is one of the rare types, it must be hard to do enroll enough women in a clinical trial for just clear cell. You might have to fight with the insurance to get it paid for if you can convince anyone to try it on you.
Please keep us posted. We love to hear from you.
Appreciate it, LaundryQueen!
Intercurrent treatment: Makes sense given cancer's ability to mutate and outsmart the drugs. I think that's happening now, as CA-125 has resumed an upward trend. Wonder if insurance considerations might factor in, and/or monitoring/managing side effects. I had different blood tests run and meds given while on Taxol/Carbo than I'm getting while on Doxil.
Started with Taxol/Carbo because it was the standard. Decision was confirmed after surgery samples were sent for testing with a TON of chemos. I need to dig out that report In the morning and refresh my memory. (Now, I should prolly stop reading and one-finger posting on this teeny iPhone and try to get some more zzzzzzzz.)
Good night or good morning!0 -
Hat Day!Rookerbird said:Thanks!
Thanks Betty, Patty and All - This board has been a tremendous help! Wonderful women!
The photo was taken at my office. The first day I wore a hat after losing my hair, one of my coworkers alerted others to wear hats too. What could have been a self-conscious day became a silly, goofy day.
I totally love it! I'm so glad that you have such warm, caring coworkers... fighting cancer one silly, goofy day at a time.
(((HUGS))) Maria0
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