Uterine Papillary Serous Carcinoma (UPSC): any others here???

lindaprocopio

Looking up the Clinical Trial drugs
Deanna: If you scroll up to the top of this page and paste in the names of each of the drugs they are considering for you in this trial, one at a time, it will take you to posts across all cancers where people here are discussing their results and side effects. One of these drugs seems associated with increased neuropathy and the other with increased heart arythmias. Of course, these people have different cancers and the drugs were in combination with different other drugs. I personally don't like the sound of that "quality of life" justification for the study. Do they hint at an IMPROVED quality of life, or do they want to see if nerve and heart damage are 'quality of life' issues?? No, that can't be it; I am being too wary here. We need to keep an open mind, as these may be drugs that we all want to consider taking. Must you decide ON the 19th? I have a CT-scan on the 16th and see my oncologist on the 19th. If you can stall them 1 more day, I will ask my oncologist about these 2 drugs on the 19th. (Heck, I'm going to ask him on the 19th regardless, since I know you can change your mind! Just don't sign anything unless you are sure!) ((((Deanna))))))

Regarding waiting for the CA-125 results, I'm sure that you can call your oncology nurse and get your CA-125 during any regular business hours. I also always get mine 'same day drawn', usually about an hour into my chemo IV. (Although I do remember waiting for my CA-125s about a week when they were drawn at the regular hospital lab instead of at the chemo center.) And from home, they set me up with password-protected internet access to all of my blood work results, and I can go online and compare my blood work (CA-125's, white, red & platelets counts, etc.) from one chemo to the next. Please don't ever hesitate to call your chemo nurse about ANYthing. I'll bet I've called about something at least once a week since I started my chemo. They never make you feel bad for bothering them. They know how important and difficult it is for a cancer patient to stay positive and not worry, and their job is to reassure you and to get answers for you from your oncologist if you ask something they cannot answer.

I will do some more research for you, Deanna (for ALL of us, since this may be something we all want to consider!) Having your chemo calendar cut by 6 weeks must be tempting! ((((Deanna))))

deanna14

pjba11 said:

lots to think about
Deanna you have a lot to think about. Where is the best place to read about your clinical trial or is it best to keep searching and send you anything we find? Linda how is your dental going? Marge and Teresa are your eyes and those side effects doing better? You are all so quiet!! You are all in my prayers. When things get tough the tough get tougher,,,, this journey is rough but I know you are so strong. Put a fire under this horrible stuff!!
(FYI; Deanna If you are nervous about your CA125 results: They are able to get them done and give them to you the same day. They do it each time for me. I had to rant and rave for a bit, but now I get them within 3-4 hours. For my 3 month check ups I have my IV started in infusion, then they draw my blood for my CA 125 from that, use the same line for my scan and in 4 hours I have my oncologist appointment with all of my scan and CA 125 results. This to me is far less nerve wracking than having to wait days for any of the results. Less stress is always the answer and my Dr repects the fact that the waiting just isn't acceptable for me. )

I like the way you think.
I noticed yesterday when she was drawing my blood that the lab slip was marked stat. I'm sure that the results were in the doctor's office yesterday late afternoon. He normally doesn't work on Fridays and was only supposed to be in the office in the morning. I suspect that he wasn't even there to get the results. I really like the way you have yours set up so that you do it all in one day and get the results. When I finish chemo and start my 3 month follow ups, I will have to try to get on a schedule like that. I like the way you say that... the waiting just isn't acceptable. I will have to borrow that line when I tell them how to schedule those follow ups.
I read about the clinical trial at www.cancer.gov. I did a google search on endometrial cancer clinical trials and found the cancer.gov site which led me to the clinical trial.
I would be happy to hear your opinions.

lindaprocopio

lindaprocopio said:

Looking up the Clinical Trial drugs
Deanna: If you scroll up to the top of this page and paste in the names of each of the drugs they are considering for you in this trial, one at a time, it will take you to posts across all cancers where people here are discussing their results and side effects. One of these drugs seems associated with increased neuropathy and the other with increased heart arythmias. Of course, these people have different cancers and the drugs were in combination with different other drugs. I personally don't like the sound of that "quality of life" justification for the study. Do they hint at an IMPROVED quality of life, or do they want to see if nerve and heart damage are 'quality of life' issues?? No, that can't be it; I am being too wary here. We need to keep an open mind, as these may be drugs that we all want to consider taking. Must you decide ON the 19th? I have a CT-scan on the 16th and see my oncologist on the 19th. If you can stall them 1 more day, I will ask my oncologist about these 2 drugs on the 19th. (Heck, I'm going to ask him on the 19th regardless, since I know you can change your mind! Just don't sign anything unless you are sure!) ((((Deanna))))))

Regarding waiting for the CA-125 results, I'm sure that you can call your oncology nurse and get your CA-125 during any regular business hours. I also always get mine 'same day drawn', usually about an hour into my chemo IV. (Although I do remember waiting for my CA-125s about a week when they were drawn at the regular hospital lab instead of at the chemo center.) And from home, they set me up with password-protected internet access to all of my blood work results, and I can go online and compare my blood work (CA-125's, white, red & platelets counts, etc.) from one chemo to the next. Please don't ever hesitate to call your chemo nurse about ANYthing. I'll bet I've called about something at least once a week since I started my chemo. They never make you feel bad for bothering them. They know how important and difficult it is for a cancer patient to stay positive and not worry, and their job is to reassure you and to get answers for you from your oncologist if you ask something they cannot answer.

I will do some more research for you, Deanna (for ALL of us, since this may be something we all want to consider!) Having your chemo calendar cut by 6 weeks must be tempting! ((((Deanna))))

Found the Clinical Trial online: http://clinicaltrials.gov/ct2/s
I found it online. Here's the link: http://clinicaltrials.gov/ct2/show/NCT00063999

lindaprocopio

lindaprocopio said:

Found the Clinical Trial online: http://clinicaltrials.gov/ct2/s
I found it online. Here's the link: http://clinicaltrials.gov/ct2/show/NCT00063999

Here's what worried me about the clinical trail...
DEANNA: I don't like it that you might be randomly put into the group that does not get Carboplatin as a part of your chemo. Scroll back up to that Duke study, since that really influenced my decision about my chemo. I know my reaction to reading that before I started my chemo was that I knew I WANTED carboplatin because it has been a tested/proven UPSC cancer-killer. On the plus side, this is a HUGE study of 900 women and you are coming in on Phase III, the safest time to join a clinical trial, since these trials are stopped if the people who get involved in Stage 1 or Stage 2 of the trial start having too much trouble or anything. But I don't like that this clinical trial is not "UPSC-specific", and that UPSC is not at all like the more common endometrial/uterine cancers, and that you run the risk of being in the 450 women that do not get carboplatin. Who am I to say, of course, I'm no oncologist. But if it were me, I'd want to know I was getting carboplatin.

I found another decsription of the trial at this URL that I think explains it better:
http://www.cancer.gov/clinicaltrials/GOG-0209

ONE ADDED THOUGHT: The group in this clinical that DOESN't get Carboplatin, DOES get Cisplatin, which is also a 'platinum'-based drug. So maybe my worries that you might not get Carboplatin are unfounded. I HATE not knowing things, and will keep searching to try and find a comparison of carboplatin and cisplatin. But it does look you would be getting some form of platinum chemo, and it is platinum chemo that the Duke study talks about working for UPSC. They may have used carboplatin in that study because that was what was available when the study started and cisplatin may be just as good or better. I just know that carboplatin helped to bring down my CA125s and that carboplatin is what Peggy took and she is NED.

lindaprocopio

lindaprocopio said:

Here's what worried me about the clinical trail...
DEANNA: I don't like it that you might be randomly put into the group that does not get Carboplatin as a part of your chemo. Scroll back up to that Duke study, since that really influenced my decision about my chemo. I know my reaction to reading that before I started my chemo was that I knew I WANTED carboplatin because it has been a tested/proven UPSC cancer-killer. On the plus side, this is a HUGE study of 900 women and you are coming in on Phase III, the safest time to join a clinical trial, since these trials are stopped if the people who get involved in Stage 1 or Stage 2 of the trial start having too much trouble or anything. But I don't like that this clinical trial is not "UPSC-specific", and that UPSC is not at all like the more common endometrial/uterine cancers, and that you run the risk of being in the 450 women that do not get carboplatin. Who am I to say, of course, I'm no oncologist. But if it were me, I'd want to know I was getting carboplatin.

I found another decsription of the trial at this URL that I think explains it better:
http://www.cancer.gov/clinicaltrials/GOG-0209

ONE ADDED THOUGHT: The group in this clinical that DOESN't get Carboplatin, DOES get Cisplatin, which is also a 'platinum'-based drug. So maybe my worries that you might not get Carboplatin are unfounded. I HATE not knowing things, and will keep searching to try and find a comparison of carboplatin and cisplatin. But it does look you would be getting some form of platinum chemo, and it is platinum chemo that the Duke study talks about working for UPSC. They may have used carboplatin in that study because that was what was available when the study started and cisplatin may be just as good or better. I just know that carboplatin helped to bring down my CA125s and that carboplatin is what Peggy took and she is NED.

Here's what I could find: Carboplatin vs Cisplatin:
I couldn't find anything specific to UPSC comparing these 2 platinum-based chemo drugs, but I did find studies comparing them for ovarian cancer, which may be relevant to Deanna's decision:

Safety and efficacy trials comparing carboplatin and cisplatin, especially in ovarian cancer, have shown that the two drugs have a similar efficacy profile. Carboplatin, however, is significantly less toxic than cisplatin. The total costs of carboplatin and cisplatin therapy, which include not only drug costs but all health care costs incurred in preventing and managing toxicity, therefore differ considerably. Thus, despite carboplatin's considerably more expensive cost per dose, when the total costs of treatment are considered, carboplatin treatment is certainly no more expensive, and in many countries may be less expensive, than cisplatin therapy.

Unfortunately, the neurotoxicity of combination therapy with cisplatin and paclitaxel can be unacceptably high. This was particularly evident in a recent study of paclitaxel 175 mg/m2 (3-h infusion) plus cisplatin 75 mg/m2, in which 16 (42%) of the 38 patients with gynecologic malignancies experienced grade 2 or higher peripheral neuropathy [161, 162]. This contrasts with the 13% incidence of grade 2 or higher peripheral neuropathy in GOG-111. As a result, studies are now under way to compare the effectiveness and toxicity of carboplatin/paclitaxel with cisplatin/paclitaxel. An initial phase I/II dose-intensification study by the GOG showed that the maximum tolerated dose (MTD) of carboplatin, when used with paclitaxel, a targeted AUC of 7.5, and the MTD of paclitaxel is 175 mg/m2 [79, 81, 163-165]. Among the 24 study participants with measurable disease, the overall response rate was 75%, the complete response rate was 67%, and the median survival time has not yet been reached after >60 weeks [81]. Owing to its platelet-sparing effect on carboplatin (dosed to achieve an AUC of 7.5), the 3-h infusion of paclitaxel (175 mg/m2) does not require concomitant use of G-CSF [81]. This regimen is also useful in the outpatient setting because of the ease of administration of the 3-h infusion [81, 166].

As the current platinum-based regimen of choice, paclitaxel plus carboplatin holds great promise in the treatment of ovarian cancer. A phase III study now being conducted by the GOG (GOG-158) is designed to compare the effectiveness of cisplatin or carboplatin combined with paclitaxel. In an effort to minimize the toxicity of cisplatin/paclitaxel, paclitaxel is delivered over a 24-h period. Ovarian cancer patients with optimal Stage III disease are randomized to receive either paclitaxel 175 mg/m2 (3 h) plus carboplatin (AUC = 7.5) or paclitaxel 135 mg/m2 (24 h) plus cisplatin 75 mg/m2. When the results of GOG-158 are mature, they should provide a more complete picture of comparative outcomes with carboplatin/paclitaxel and cisplatin/paclitaxel.

As the results emerge from recent studies in which carboplatin is optimally dosed in combination with other active agents, such as paclitaxel, carboplatin may well prove to be more active than cisplatin in ovarian and lung cancer and at least equivalent to cisplatin in other tumor types. Germ cell tumors remain an exception and are most sensitive to cisplatin. In combination with paclitaxel, carboplatin appears to have at least an additive cytotoxic effect. Because their toxicities are complementary, they can be administered together without exacerbating their individual toxicity profiles. This is often not possible with cisplatin, which has additive dose-limiting neuropathy. In contrast, paclitaxel appears to have a protective effect on thrombocytopenia, the normally dose-limiting toxicity of carboplatin. Furthermore, this highly active combination does not require the concomitant use of growth factors when paclitaxel is administered.

(That's a lot of medical jargon, but to me it says: stick with the carboplatin as it is less toxic combined with the taxol than combining cisplatin with the taxol. And for UPSC you need taxol and some platinum-based chemo combo! But hear out your oncologist and listen with an open mind. "Dr. Linda" recommends you skip the clinical trial. But I will support your decision, either way, Deanna, and never second-guess you.)

Teresa 61

lindaprocopio said:

Here's what I could find: Carboplatin vs Cisplatin:
I couldn't find anything specific to UPSC comparing these 2 platinum-based chemo drugs, but I did find studies comparing them for ovarian cancer, which may be relevant to Deanna's decision:

Safety and efficacy trials comparing carboplatin and cisplatin, especially in ovarian cancer, have shown that the two drugs have a similar efficacy profile. Carboplatin, however, is significantly less toxic than cisplatin. The total costs of carboplatin and cisplatin therapy, which include not only drug costs but all health care costs incurred in preventing and managing toxicity, therefore differ considerably. Thus, despite carboplatin's considerably more expensive cost per dose, when the total costs of treatment are considered, carboplatin treatment is certainly no more expensive, and in many countries may be less expensive, than cisplatin therapy.

Unfortunately, the neurotoxicity of combination therapy with cisplatin and paclitaxel can be unacceptably high. This was particularly evident in a recent study of paclitaxel 175 mg/m2 (3-h infusion) plus cisplatin 75 mg/m2, in which 16 (42%) of the 38 patients with gynecologic malignancies experienced grade 2 or higher peripheral neuropathy [161, 162]. This contrasts with the 13% incidence of grade 2 or higher peripheral neuropathy in GOG-111. As a result, studies are now under way to compare the effectiveness and toxicity of carboplatin/paclitaxel with cisplatin/paclitaxel. An initial phase I/II dose-intensification study by the GOG showed that the maximum tolerated dose (MTD) of carboplatin, when used with paclitaxel, a targeted AUC of 7.5, and the MTD of paclitaxel is 175 mg/m2 [79, 81, 163-165]. Among the 24 study participants with measurable disease, the overall response rate was 75%, the complete response rate was 67%, and the median survival time has not yet been reached after >60 weeks [81]. Owing to its platelet-sparing effect on carboplatin (dosed to achieve an AUC of 7.5), the 3-h infusion of paclitaxel (175 mg/m2) does not require concomitant use of G-CSF [81]. This regimen is also useful in the outpatient setting because of the ease of administration of the 3-h infusion [81, 166].

As the current platinum-based regimen of choice, paclitaxel plus carboplatin holds great promise in the treatment of ovarian cancer. A phase III study now being conducted by the GOG (GOG-158) is designed to compare the effectiveness of cisplatin or carboplatin combined with paclitaxel. In an effort to minimize the toxicity of cisplatin/paclitaxel, paclitaxel is delivered over a 24-h period. Ovarian cancer patients with optimal Stage III disease are randomized to receive either paclitaxel 175 mg/m2 (3 h) plus carboplatin (AUC = 7.5) or paclitaxel 135 mg/m2 (24 h) plus cisplatin 75 mg/m2. When the results of GOG-158 are mature, they should provide a more complete picture of comparative outcomes with carboplatin/paclitaxel and cisplatin/paclitaxel.

As the results emerge from recent studies in which carboplatin is optimally dosed in combination with other active agents, such as paclitaxel, carboplatin may well prove to be more active than cisplatin in ovarian and lung cancer and at least equivalent to cisplatin in other tumor types. Germ cell tumors remain an exception and are most sensitive to cisplatin. In combination with paclitaxel, carboplatin appears to have at least an additive cytotoxic effect. Because their toxicities are complementary, they can be administered together without exacerbating their individual toxicity profiles. This is often not possible with cisplatin, which has additive dose-limiting neuropathy. In contrast, paclitaxel appears to have a protective effect on thrombocytopenia, the normally dose-limiting toxicity of carboplatin. Furthermore, this highly active combination does not require the concomitant use of growth factors when paclitaxel is administered.

(That's a lot of medical jargon, but to me it says: stick with the carboplatin as it is less toxic combined with the taxol than combining cisplatin with the taxol. And for UPSC you need taxol and some platinum-based chemo combo! But hear out your oncologist and listen with an open mind. "Dr. Linda" recommends you skip the clinical trial. But I will support your decision, either way, Deanna, and never second-guess you.)

Chemo
I'am also on 6 rounds of carboplatin/taxol.One round every 21 days. Not sure I mentioned that in the past. Good luck with your decision Deanna.
Marge, had the kaleidoscope effect again yesterday for about 2 hours. I was out shopping with my husband and it was very bright and sunny, it started as soon as I got in the house.
Linda,you are so amazing with all your information. I love your posts.....
Peggy, love posts from you too.. So nice to hear from someone who's been there..

deanna14

Teresa 61 said:

Chemo
I'am also on 6 rounds of carboplatin/taxol.One round every 21 days. Not sure I mentioned that in the past. Good luck with your decision Deanna.
Marge, had the kaleidoscope effect again yesterday for about 2 hours. I was out shopping with my husband and it was very bright and sunny, it started as soon as I got in the house.
Linda,you are so amazing with all your information. I love your posts.....
Peggy, love posts from you too.. So nice to hear from someone who's been there..

Thanks Linda!
Linda, I so appreciate the input on the clinical trial. As I said, I will hear them out, but from what I read, I agree with you Linda. Really never thought about doing the comparison that you did, but it was very helpful. I asked for my oncs opinion, but it seemed he just talked around it but never answered it. I guess he really can't tell me what he would do. Anyway, what I got out of the conversation was that although UPSC is similar to ovca, that it is not ovca. He did express a concern about how long it might take to get a useful sampling of UPSC patient for the trial. I kinda took this as if he would come out and tell me what to do, it would be to skip the trial. The side effects of cisplatin, taxol and adriamycin must be pretty severe. I am scheduled for a MUGA scan, EKG and audiology consult in the event that I participate. If I decide against the clinical trial, which I probably will, then I will cancel them. Thank you again Linda for taking a look at that and giving me your input.
Wow, so much to pray about! I will keep you posted. I am scheduled for chemo teaching on the 19th, so it is best that I have a decision made before then. I guess I can change my mind up to the time they infuse the medications. I would still be interested in hearing what your oncologist says about it for future reference.
Teresa, I hope you are feeling well. You are so right, Linda is amazing. She is such an asset to our group here. She is very good at looking at all the angles. Am I correct in thinking you have had 1 cocktail so far? I am hoping I will make it through the full treatment with no postponements. Good luck to you to.
Hugs for a better day to all.
Deanna

lindaprocopio

Now I'm blushing! I'm far from amazing.
Thanks for all the compliments. A huge part of the work I do involves internet research to find comparable programs and supporting statistics, etc., so I've gotten pretty good at being able to lay my hands on what I need online. And I've always been insatiably curious about just about anything that captures my interest. PLUS, if I'm looking up things online, I have a good excuse to continue to procrastinate about taking down my Christmas tree (still up!! oh, no!)

PEGGY: You asked about my visit to the dentist. Luckily, the 2 teeth that the 'bridge' was originally attached to weren't filed down or anything when the bridge was installed decades ago, and so those other teeth aren't compromised in any way if I leave the bridge out awhile. And the dentist said that, at my age, I don't need to worry about my teeth shifting if I leave that space open for 6 months or so. He wanted to buff off the old cement, but when I told him I would need to get an updated platelet count before he could do that, he decided the cement could stay on. The gap is really far back in my mouth and doesn't show, and I hated that bridge anyway. So we are going to wait until after all of my treatments are over, and implant a false tooth into the jaw in that space instead. That implant costs 5 times as much, and is considered 'cosmetic' and won't be covered by insurance, but I am still going for it. They don't give flouride treatments without a cleaning and I can't have a professional cleaning without bloodwork done, so I didn't get that either. It was kind of a wasted dental visit, but he didn't charge me. It's funny: he told me he 'steeled himself' before I came, worried about how ravaged I would look from the cancer, as he has been my dentist for over 30 years. He said he was relieved that I still looked like 'Linda'. I guess it can be a shock for some people. So far, 2 of my girlfriends cried when they first saw my bald head. Kind of insulting, and yet I know their tears are in empathy for what they think is just a horrible thing.

Teresa 61

lindaprocopio said:

Now I'm blushing! I'm far from amazing.
Thanks for all the compliments. A huge part of the work I do involves internet research to find comparable programs and supporting statistics, etc., so I've gotten pretty good at being able to lay my hands on what I need online. And I've always been insatiably curious about just about anything that captures my interest. PLUS, if I'm looking up things online, I have a good excuse to continue to procrastinate about taking down my Christmas tree (still up!! oh, no!)

PEGGY: You asked about my visit to the dentist. Luckily, the 2 teeth that the 'bridge' was originally attached to weren't filed down or anything when the bridge was installed decades ago, and so those other teeth aren't compromised in any way if I leave the bridge out awhile. And the dentist said that, at my age, I don't need to worry about my teeth shifting if I leave that space open for 6 months or so. He wanted to buff off the old cement, but when I told him I would need to get an updated platelet count before he could do that, he decided the cement could stay on. The gap is really far back in my mouth and doesn't show, and I hated that bridge anyway. So we are going to wait until after all of my treatments are over, and implant a false tooth into the jaw in that space instead. That implant costs 5 times as much, and is considered 'cosmetic' and won't be covered by insurance, but I am still going for it. They don't give flouride treatments without a cleaning and I can't have a professional cleaning without bloodwork done, so I didn't get that either. It was kind of a wasted dental visit, but he didn't charge me. It's funny: he told me he 'steeled himself' before I came, worried about how ravaged I would look from the cancer, as he has been my dentist for over 30 years. He said he was relieved that I still looked like 'Linda'. I guess it can be a shock for some people. So far, 2 of my girlfriends cried when they first saw my bald head. Kind of insulting, and yet I know their tears are in empathy for what they think is just a horrible thing.

Chemo
Deanna, had my fist round Jan.2, next round will be Jan.27th. Did not feel well for 6 days. Think I'am also still healing from my Dec.11th,hysterectomy. My pelvic bone still feels pretty sore.
Also have been stressed about my hair coming out. Still have it but I know not for long.
Yesterday and today have been really good days. Hope I stay this way till the next round.

deanna14

Teresa 61 said:

Chemo
Deanna, had my fist round Jan.2, next round will be Jan.27th. Did not feel well for 6 days. Think I'am also still healing from my Dec.11th,hysterectomy. My pelvic bone still feels pretty sore.
Also have been stressed about my hair coming out. Still have it but I know not for long.
Yesterday and today have been really good days. Hope I stay this way till the next round.

You do good work.
Linda, never the less, you are an amazing blessing to me. I am not very good at research, so you truly are a blessing to me. You see, I am up before the crack of dawn, thinking this through again. I need to just let it go until I hear from the ca research center with the info. I do not think I will participate.
Teresa, I am happy that you are having good days now post chemo. Marge and Linda could answer the hair question better than I. I want to guess that is was about 2 weeks after their initial treatments that they began to lose their hair. I might feel differently when the time comes, but I feel prepared for the hair loss. I ordered a wig on Friday and I cut my hair very short on Wednesday. I will probably have my hair cut again week after next, just mental preparation.
I'm going to try to go get some sleep. Hugs to all.

lindaprocopio

Be sure they get your insurance pre-approvals either way.
DEANNA: Money shouldn't ever have to factor into a health decision this important, so I hesitate to throw this into your thought process. But be sure that your insurance will cover the added costs of you being in the trail (the additional testing you ordinarily wouldn't get, any drugs not considered the norm, etc.) Sometimes a drug company is picking up the additional cost of the trail testing as they try to get a newer drug into more common use, but you cannot assume this is the case. We call our insurance company ourselves with questions like that for advance knowledge that there may be a problem, and then get the hospital/clinic's financial department involved to get the definitive approval/disapprovals of insurance coverage. You know this from your Da Vinci surgery fiasco. The additional testing and post-treatment follow-up monitoring are the most attractive parts of being in the clinical trial, in my opinion. But not if you are personally picking up that tab.

One more thought in this decision: To me, the way they word it, it looks like the carboplatin/taxol combo is the NEWER of the 2 chemo cocktails, being formally tested against an older chemo cocktail strategy with the cisplatin. That also makes me lean towards passing on this trial. I hate to see you up and sleepless in the early morning hours, you poor thing. (((((Deanna)))))

lindaprocopio

lindaprocopio said:

Be sure they get your insurance pre-approvals either way.
DEANNA: Money shouldn't ever have to factor into a health decision this important, so I hesitate to throw this into your thought process. But be sure that your insurance will cover the added costs of you being in the trail (the additional testing you ordinarily wouldn't get, any drugs not considered the norm, etc.) Sometimes a drug company is picking up the additional cost of the trail testing as they try to get a newer drug into more common use, but you cannot assume this is the case. We call our insurance company ourselves with questions like that for advance knowledge that there may be a problem, and then get the hospital/clinic's financial department involved to get the definitive approval/disapprovals of insurance coverage. You know this from your Da Vinci surgery fiasco. The additional testing and post-treatment follow-up monitoring are the most attractive parts of being in the clinical trial, in my opinion. But not if you are personally picking up that tab.

One more thought in this decision: To me, the way they word it, it looks like the carboplatin/taxol combo is the NEWER of the 2 chemo cocktails, being formally tested against an older chemo cocktail strategy with the cisplatin. That also makes me lean towards passing on this trial. I hate to see you up and sleepless in the early morning hours, you poor thing. (((((Deanna)))))

'Look Good; Feel Better" from American Cancer Society
Have any of you gone to one of the 'Look Good / Feel Better' workshops given by the American Cancer Society? I went today and it was really fun. I learned all kinds of ways to tie scarves into turbans and how to fill out my rapidly-thinning eyebrows. They suggested blush and lip colors I would never have tried and eye 'brighteners' I didn't know existed, and the new look was really pretty. But the best part was that they send you home with a big make-up kits worth several hundred dollars with really high quality makeup and moisturizers and goodies. You just call the American Cancer Society to reserve for one near you, DO it, if you haven't.

deanna14

lindaprocopio said:

'Look Good; Feel Better" from American Cancer Society
Have any of you gone to one of the 'Look Good / Feel Better' workshops given by the American Cancer Society? I went today and it was really fun. I learned all kinds of ways to tie scarves into turbans and how to fill out my rapidly-thinning eyebrows. They suggested blush and lip colors I would never have tried and eye 'brighteners' I didn't know existed, and the new look was really pretty. But the best part was that they send you home with a big make-up kits worth several hundred dollars with really high quality makeup and moisturizers and goodies. You just call the American Cancer Society to reserve for one near you, DO it, if you haven't.

Look Good Feel Better
I made a reservation on the 26th of this month. I'm glad to hear you had fun. I am really looking forward to it. Yeah! My wig should come in this Thursday and I heard they help you in learning how to style it.
My CA 125 from Friday was 9.9, so it is staying down, the first one was 11. I know it's not the always reliable, but I'm taking it as good news! My WBC is almost back to normal from radiation. Things are looking good.
Since I have to have chemo, I'm ready to get it started!
We have 1 week a year of annual refresher training at work and doc approved me to go this week. I went today and it felt wonderful to feel "normal". I kinda wish he would let me work when I feel well. He is just does not want me working during treatment, he says I need to relax and let my body heal. I think I might find somewhere to volunteer a couple of days on the week before chemo. I guess I'll get through the first cycle and see how I feel.
By the way, I have decided NOT to participate in that clinical trial. Those drugs are just to toxic and I just don't see the benefit to me. I had a message today from the cancer research center and they are sending me information and a consent form. How lame is that? They aren't even going to take the time to talk to me in person. It just doesn't feel right and I think if it was meant for me, I would have a better feeling about it.
So, I am going to call them and let them know. Hopefully by Monday when I do chemo teaching, they will give me a start date.
Linda, I am so glad you had fun today. Now I'm really excited to go. I was wondering how one learned to tie those scarves!

shortmarge

deanna14 said:

Look Good Feel Better
I made a reservation on the 26th of this month. I'm glad to hear you had fun. I am really looking forward to it. Yeah! My wig should come in this Thursday and I heard they help you in learning how to style it.
My CA 125 from Friday was 9.9, so it is staying down, the first one was 11. I know it's not the always reliable, but I'm taking it as good news! My WBC is almost back to normal from radiation. Things are looking good.
Since I have to have chemo, I'm ready to get it started!
We have 1 week a year of annual refresher training at work and doc approved me to go this week. I went today and it felt wonderful to feel "normal". I kinda wish he would let me work when I feel well. He is just does not want me working during treatment, he says I need to relax and let my body heal. I think I might find somewhere to volunteer a couple of days on the week before chemo. I guess I'll get through the first cycle and see how I feel.
By the way, I have decided NOT to participate in that clinical trial. Those drugs are just to toxic and I just don't see the benefit to me. I had a message today from the cancer research center and they are sending me information and a consent form. How lame is that? They aren't even going to take the time to talk to me in person. It just doesn't feel right and I think if it was meant for me, I would have a better feeling about it.
So, I am going to call them and let them know. Hopefully by Monday when I do chemo teaching, they will give me a start date.
Linda, I am so glad you had fun today. Now I'm really excited to go. I was wondering how one learned to tie those scarves!

I'll have to Go
Linda, I'm glad you had fun. I have a couple of scarves and just can't seem to get them tied right.

Deannna, I'm happy you have come to your decision and all of your good news. It's nice to feel normal too!!!

I missed work yesterday. This chemo is catching up with me and I seemed to have a balance problem. I went on line to find more info on side effects. It does say that towards the end of you chemo treatments you will get more fatigued. So I took a really good nap. I'm heading out to the ENT doctor today to see if it is my ear causing the balance problem.

I have come to my decision and will be taking my last chemo treatment on Friday. I have read some places that four is a good target if you body doesn't handle the chemo well. I wonder if the doctors ever consider your height or weight when administering the chemo. You know like they do when the prescribe antibotics or any other drug. I am only 5'0"....

So many questions that we will never have answers to. Oh well, I guess that's life.

MIND, BODY AND SOUL!

Hugs

shortmarge

shortmarge said:

I'll have to Go
Linda, I'm glad you had fun. I have a couple of scarves and just can't seem to get them tied right.

Deannna, I'm happy you have come to your decision and all of your good news. It's nice to feel normal too!!!

I missed work yesterday. This chemo is catching up with me and I seemed to have a balance problem. I went on line to find more info on side effects. It does say that towards the end of you chemo treatments you will get more fatigued. So I took a really good nap. I'm heading out to the ENT doctor today to see if it is my ear causing the balance problem.

I have come to my decision and will be taking my last chemo treatment on Friday. I have read some places that four is a good target if you body doesn't handle the chemo well. I wonder if the doctors ever consider your height or weight when administering the chemo. You know like they do when the prescribe antibotics or any other drug. I am only 5'0"....

So many questions that we will never have answers to. Oh well, I guess that's life.

MIND, BODY AND SOUL!

Hugs

HEARING
Just went to the ENT, he told me that I should have had a hearing test before chemotherapy. Yes, it can effect your hearing. My high pitch is on the boarder of normal, so far so good. It effects the high pitch. He said that I should have been seen after every treatment and if I have to go through chemo again he wants to see me before I start. He also said that cisplatin is the worst for effecting your hearing!

Wow, just another discovery in the journery!!!!

MIND, BODY AND SOUL

Hugs

deanna14

shortmarge said:

HEARING
Just went to the ENT, he told me that I should have had a hearing test before chemotherapy. Yes, it can effect your hearing. My high pitch is on the boarder of normal, so far so good. It effects the high pitch. He said that I should have been seen after every treatment and if I have to go through chemo again he wants to see me before I start. He also said that cisplatin is the worst for effecting your hearing!

Wow, just another discovery in the journery!!!!

MIND, BODY AND SOUL

Hugs

Cisplatin?
Marge,
What chemo drugs are you getting? I hope you start feeling better soon. I know you must feel some peace having made your decision. So did your doctor think that the imbalance is just a side effect of chemo?
They scheduled me for an audiology consult next week. I was under the impression that I didn't need to go to it unless I decided to do the clinical trial. I guess I should call and check before I cancel anything. I am scheduled next week for a MUGA scan, EKG, audiology consult and CT scan. The CT scan is my 3 month follow up, but I thought the others were for the clinical trial.

lindaprocopio

I never had my hearing tested, ever.
I'm not sure a hearing test is standard,...although maybe it should be based on Marge's story. But I never had a hearing test, nor has it ever been mentioned. I'm curious if Peggy or Teresa had their hearing tested pre-chemo. Maybe I missed something important.

Some big decisions made this week, good ones I think. Congratulations and I hope you each feel peace and confidence in a well-thought-out decision.

I have a question you may be able to help me with: Have any of you ever read or been told by an oncologist of a genetic link or the tendency for UPSC to run in families? Something Peggy sent me that linked UPSC with breast cancer had me wondering about my grandmother (my father's mother- who had breast cancer),...and in turn worrying about my little grand-daughter (as I am HER father's mother!) If this runs in families, I would want my grand-baby girl to start having screenings earlier than at 50 years old, ya know. I hope I am worrying for nothing. Worry is probably too strong a word,..concerned is closer to how I feel.

deanna14

lindaprocopio said:

I never had my hearing tested, ever.
I'm not sure a hearing test is standard,...although maybe it should be based on Marge's story. But I never had a hearing test, nor has it ever been mentioned. I'm curious if Peggy or Teresa had their hearing tested pre-chemo. Maybe I missed something important.

Some big decisions made this week, good ones I think. Congratulations and I hope you each feel peace and confidence in a well-thought-out decision.

I have a question you may be able to help me with: Have any of you ever read or been told by an oncologist of a genetic link or the tendency for UPSC to run in families? Something Peggy sent me that linked UPSC with breast cancer had me wondering about my grandmother (my father's mother- who had breast cancer),...and in turn worrying about my little grand-daughter (as I am HER father's mother!) If this runs in families, I would want my grand-baby girl to start having screenings earlier than at 50 years old, ya know. I hope I am worrying for nothing. Worry is probably too strong a word,..concerned is closer to how I feel.

Genetic link
They ran genetic testing on the lymph node they took out that was malignant. My oldest brother had colon cancer, maternal grandmother had colon cancer, mother had breast and endometrial cancer. I am positive for Lynch Syndrome, which is a genetic link in colon and uterine cancer. Later, probably after chemo, I will be referred to a genetic counselor for further testing and counseling. So far, no on has said anything about UPSC being familial, just the it increases risk of having uterine of colon ca. I will get the opportunity at some point.

shortmarge

deanna14 said:

Genetic link
They ran genetic testing on the lymph node they took out that was malignant. My oldest brother had colon cancer, maternal grandmother had colon cancer, mother had breast and endometrial cancer. I am positive for Lynch Syndrome, which is a genetic link in colon and uterine cancer. Later, probably after chemo, I will be referred to a genetic counselor for further testing and counseling. So far, no on has said anything about UPSC being familial, just the it increases risk of having uterine of colon ca. I will get the opportunity at some point.

Genetic
I had a genetic test when I found out I had cancer and it was negative. Made me feel better because I have a 17 year old daughter. But I did some research on Lynch Syndrome and worry for my daughter because my husbands paternal grandmother, paternal grandfather, paternal uncle all had colon cancer and his father died of stomach cancer which I understand is also linked to Lynch Syndrome. His grandfather died from the colon cancer and his uncles colon cancer met. to his lungs. He lived for 8-1/2 years with it and passed away last year. I'm going to see if they will test my husband.

The ENT did think the imbalance was due to the chemo and probably my ears. He feels that since I am not as bad as the first week after chemo that I should recover from it. I guess that is why they ask before your next chemo if you have any ringing in your ears.

Deanna, I am on carbo/taxol combo.

I'm off to the doctors today for my blood work and to see her. This in prep for chemo Friday. I have a 1 month check tomorrow with the rad. dr. tomorrow. I will be so glad when I don't have to go to the drs. all the time.

MIND, BODY AND SOUL

Have a wonderful day, hugs....

lindaprocopio

Lynch Syndrome
Thanks so much for the info on Lynch Syndrome; I never heard of it before. Of course I immediately did some research to learn more about it. I looked through all of my pathology reports and can't find any genetic testing or Lynch Syndrome testing of my malignant lymph node. Maybe they didn't bother testing me because those with Lynch Syndrome usually develop cancer at a younger age than 55 and so I was not considered a likely case, and my family has no history of colon cancer. Although I wish they had done the genetic testing so I can put that worry behind me or deal with it if the results were positive! One more thing to put on my 'questions' list for my pre-chemo oncology consult Monday! Thanks again. Makes me glad I had a routine colocoscopy and mammogram just prior to the whole cancer scare, and both were good.

I have a routine CT scan Friday and my 4th chemo round Monday, so I'll let you know how I make out. (fingers crossed for luck.)