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USPC Reoccurance Need Your Help

good4us
Posts: 16
Joined: Nov 2011

This discussion board has been so encouraging and helpful. I would really appreciate your thoughts and suggestions. When the doctor looks at you and says "he's out of bullets" and that additional chemo may not provide any more benefit, that he cannot tell you if you have 3 mos, 6 mos, or 9 mos (not years) left, it's just hard. I don't want to accept it and as long as my mom is up for continuing the fight, we will support her. My mom has been blessed with a long life and I keep holding onto the fact that it is our God who numbers our days...not the doctor. If my mom feels "OK" she's willing to continue. When she feels lousy...she'd rather move on to the next world. I don't blame her. Here is her journey. Again, I would appreciate your thoughts and experiences as we are unsure of the next step.

My mom was diagnosed in late 2008 with UPSC. She had a hysterectomy and 2 treatments of Carbo/Taxol. In January or February of 2009 she suffered from a pneumonia which required surgery (to remove empyema or pus on the lungs). We nearly lost her. At that time, my mom decided that she didn't want anymore chemo because her CT scan was clear and she nearly died of complications from the pneumonia. We didn't realize the gravity and tenacity of the disease.

All was well for nearly two years. Then, in February 2011, she had abdominal pain. A CT scan confirmed mesenteric infiltration. My mom was again placed on Carbo/Taxol and seemed to be responding as her Ca=125 was coming down (from 260s to 80s I think). She had problems with low platelets and often the treatments were delayed. Finally, sometime in August 2009, they dropped the Carbo and just gave my mom Taxol. During her treatments with Taxol, she had a consult with a Hem-Onc doctor. Her platelets were low (she had a problem with low platelets even before chemo). She was started on Nplat shots which she received weekly to help stimulate platelet production. This seemed to work for her and she missed less treatments. Her Ca 125 was steady, but in mid November of 2009, it doubled and my mom's belly filled with fluid (ascites). She had a paracenteis which confirmed, of course, metastatic disease.

Since mid November, my mom's condition has deteriorated. The doctor started her on Adriamycin (doxorubicin?) in Dec. 2011. After 3 rounds, her ascites has been kept in check, although she still has pockets around liver and in mesenteric fat. Her most recent CT scan showed an new and enlarged lymph node in the right iliac chain. It is pressing on her ureter so she is in danger of losing her right kidney. She is to have a stent placed in the ureter to open up the tube and hopefully relieve some symptoms. So, there is no significant change, after 3 rounds of Adriamycin, in the CA 125. With the new findings of an enlarged lymph node. The doctor has deemed this 3 chemo unsuccessful and, that's when he told us he's "out of bullets"....we can go on hospice care, try chemo...his suggestion was a Gem/carbo combination, but there may be no benefit as far as longevity is concerned.

My mom has gone from 130 lbs to who knows what...(she doesn't like to talk about it now)...but I can see her bones and outline of her muscles...she must be less than 100 lbs. She wasn't eating initially because of fluid on the belly, then no appetite (started appetite stimulants twice a day), constipation has been an ongoing issue as well as a feeling of pressure in the upper abdomen. She has tired of many of the oral supplements. I saw on one CT that she has a small hiatal hernia. The doctor gave us Protonix and Reglan to try. I think she is feeling a little better on these drugs (protonix). I have ordered Scandishakes online as she seems to tolerate those, but she takes half a package which defeats the purpose of having a 600 cal shake in 8 oz! We simply cannot make her eat. She knows what she needs to do, but implementing it is something else!

So, my mom is just taking this in stride it seems. I think she is preparing herself for more chemo. I really would like some reassurance that the Gem/carbo is the best choice for her. Back in 2008, her original tumor was sent to OncoTech. It came back weakly Her2 positive (+2), 70% ki-67 3+, 80% p53 gene product 3 +, and little or no estrogen/progesterone sensitivity, no MDR-1 detected. I have seen studies from Yale that seem to suggest that Herceptin and other monoclonal antibodies may be useful. But, my mom's doctor never mentioned use of Herceptin....maybe because she was not strongly positive or the expense? What about Avistan?
I tried to get chemo sensitivity profiling through "rational therapuetics" and weisenthal cancer group, but there is a glitch in Florida. Florida labs/hospitals cannot send tissue/fluid to labs outside the state of FL unless those labs are licensed by the state of FL (archaic with the CLEA laws), so the chance I had with the previous ascites fluid was lost. I have since contacted the Director of Labs at my mom's hospital facility and have found that we can send the specimen to the dr. office and then they can send direct out of state....red tape. She doesn't have enough ascites fluid to drain off now and the doctor told me we couldn't remove the lymph node. I didn't think about the needle aspiration. It really is not the quantity of tissue or fluid the lab receives but the quality...more cancer cells the better for testing.

It just seems like they are on the cusp of making a big break through with this disease. If we can all hang in there long enough, there has got to be a cure or some drug combo that will keep it in remission.

Any thoughts? Thank you for allowing me to get things off my chest!

.

Tresia23's picture
Tresia23
Posts: 75
Joined: Dec 2010

Hi, It is really good to hear that you have found the discussion board helpful and encouraging. I cannot talk about UPSC but I can understand how you may be feeling as well as your mum. My husband had liver cancer. When you wrote about your mum wanting to go on when she feels ok but wanting to leave when things were not good, I think what you are both experiencing is something common to families at this stage on the journey. My husband and I also wished and prayed for a breakthrough in science with the excitement around stem cell therapy but for us it was still in the future. This is not said to be negative but simply to acknowledge that we all wish to live and be happy and not to suffer. It sounds like you and your mum are pretty tuned into each other. This is really good because you can then rely on your mum to let you know when she has had enough of treatment. She will let you know and you will also be in a place where you can accept that when the time comes.
Can I say to you that your journey is as difficult as the one your mum is making. It is a heartbreaking thing to have to stand by the ones we love, feeling that we want so much to help but knowing the limitations.
If there is the possibility of a treatment that can keep your mum in remission I think that is something that her doctor would also wish more than anything for you both. Keeping you both in my thoughts,

good4us
Posts: 16
Joined: Nov 2011

Thank you so much. What you say is true. To know that we are not alone is comforting. We do hope for a cure or some type of remission, but know that it may be beyond our reach at this time. Every female in the past two generations has had cancer (breast cancer, thymoma, and UPSC). My mom has 5 grand-daughters so we must remain diligent in our fight and our hope. But, for today, we will find joy in the small stuff...eating a bowl of soup, sharing a laugh, enjoying the company of family and friends. Thank you so much for your thoughtful note...you do know what we are going through and I feel like I've been wrapped in a great big hug.

LaurelWillow
Posts: 13
Joined: Mar 2012

Dearest Good4Us,

I can imagine that seeing your mom fading must be very hard. There are critical trials that your mom may be eligible for and you can look them up yourself. Ask the doctor or go to www.clinicaltrials.gov

Also, the Ovarian Cancer discussion board may be of use since UPSC acts a great deal like OVCA.

Copper chelation is another useful tool for some people. Your doctor can scoff but a compounding pharmacist can make the required doses. Here is a short info:
http://www.ncbi.nlm.nih.gov/pubmed/19335282

Never lose hope. Help your mom to do what is best for her.

Thinking of you.

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

No one can give you any answers because you don't know if something works until you try it. Carbo/Gemzar is often used for ovarian cancer & the real superstar is the carbo. The problem with the carbo is that it builds up in the bones & eventually damages the bone marrow. That's the why the low platelets and/or anemia happens.

The other platinum drug is cisplatin which is less damaging to bone marrow but harder on the kidneys. See what the doc thinks about a possible cisplatin/Gemzar combo. The doc will know if you mom's kidneys are doing OK or not.

The problem is that UPSC & ovarian cancer (and others) MUTATE. So we're dealing with a moving target. Most third-line treatments offer a 20% response rate.

You didn't mention Avastin; however, I am skeptical about the benefits of Avastin:

www.onclive.com/publications/Oncology-live/2012/february-2012/Benefits-of-Bevacizumab-in-Ovarian-Cancer-Clarified

If your mom isn't able to eat, she's just as likely to succumb to malnutrition as cancer. Maybe an integrative doctor can help with nutritional support for your mom.

I did chelation therapy to get the platinum out of my bones when I finished the first-line chemo & I think it has made a difference. On the second time around with carbo, I have not needed to delay treatment waiting for my absolute neutrophil count to improve.

If your mom gets into hospice, then I think she has to give up chemo. BUT she can get into palliative care for symptom management and still try different chemos. You haven't mentioned Topotecan yet maybe because it also knocks down platelets especially after someone has been on carbo.

Best wishes.

good4us
Posts: 16
Joined: Nov 2011

Thank you so much for the information. I will look up those websites shortly and review.

My mom has been plagued with low platelets, low red cell counts, and white blood cells. She usually gets an NPlat shot for platelets (this will stop for now since her platelets are almost 400 ) on a weekly basis, Procrit when her red blood cells warrant, and Neulasta or Neupogen after chemo. She hasn't had chemo since Feb. 9th I believe. Her kidney function tests are elevated because of a blockage but hopefully that will be resolved with a stent...so I think Cisplatin is out.

I have not heard of chelation therapy to remove copper. Is the Copper from the chemo? I am anxious to read the article. Did you tolerated the chelation therapy well? What is it like? Any side effects? Will insurance cover? If not dare I ask what is considered a typical cost of treatments. How long do treatments last? How do they monitor?

I would REALLY like to get a tissue sample so it can be evaluated. I have not had the opportunity lately. I guess that's good in a way because it means that the fluid is not building up. But, on the other hand, that I think is the best way to get a sample and an idea of what would be useful treatment for her. I am wondering how everyone is getting tissue samples. Do you think a needle biopsy would work? Does that usually supply enough tissue? I think its not quantity of tissue so much as quality (more tumor cells to test).

I understand malnutrition is a major concern now. She is starting to eat a little more and I am pushing the Scandishakes. I think we may check into some complemetary therapies/physicians.

Topotecan showed "exteme" chemoresistance in her initial chemosensitivity panel. Gemcitabine and Ifosamine showed the lowest drug resistance. My mom was offered one study with the possibility of being put into Doxirubicin (failed already) or Ixebepilone...there was another drug which I think she already had. Has anyone had experience with Ixebepilone?

Also the doctor sent her records to NIH, but at that time there was nothing for her, but they said to check back so we need to do that. My mom is not crazy about going into a clinical trial, but if we could get an idea from a chemosensitivity profile...I'm thinking that is the way to go.

Thank you again. We are hoping for the best but trying to be realistic as well.

LaurelWillow
Posts: 13
Joined: Mar 2012

Hi,

I don't believe that Ascites can be used for chemo sensitivity testing. Each lab is different and I know one person who had Stage IV lung cancer eradicated. They used Rational Therapeutics but sent in a lymph node sample. Here are some of the labs:
http://www.cancercompass.com/message-board/message/all,1224,0.htm

I realize that you already have a lab that you selected but it may be worth calling through them or looking at their websites to see what material they need. I believe the list has been updated on several sites so google it and see if any other labs pop up.

If your mom is at a major medical institution there may be a tumor board that could review her case. Also, it is probably a good time to get her case reviewed by other gyn oncs. Look up the most aggressive OVCA gyn oncs around the country and perhaps get on their calendar.

Rebuilding her system is key now and keeping her comfortable is also important. Do whatever she wants but let her lead.

Clinical trials are no picnic. I am in one and the massive doses of radiation that I get from all of the CTs I have to have for the protocol worry me. And, the test drug may or may not be working but it has a lot of side effects.

Life's a crap shoot. Keep your chin up and just be there with your mom. There is no right answer so be gentle with yourself in all that you are doing.

Laurel

LaurelWillow
Posts: 13
Joined: Mar 2012

Oh, to answer the query regarding chelation: it looks like Carolenk mentions something about platinum chelation (which I didn't know existed). Copper chelation is used to bring copper and zinc levels into balance. Apparently cancer needs copper so reducing it has been found to be effective in some patients if they start early enough. I don't know a ton about it but am going to try this protocol myself. If you look into it and talk to a good Naturopath or someone open to alternative treatments they can write the prescription for the compounding pharmacist.

Best,

Laurel

good4us
Posts: 16
Joined: Nov 2011

Hi Laurel (and all),

I have contacted Rational Therapeutics because I saw the information about Tina Brutsch who has had great success with them from her testimonial. They are a fantastic group. When I had difficulty figuring out how to get a sample out of the State of FL and kept hitting road blocks so I dropped it for awhile.

Dr. Nagourney (Raitonal Therapuetics) and Dr. Weisenthal (Weisenthal Cancer Group), used to work together and I believe started Onocotech. They sold the company in the early 90s and both went their separate ways. We are fortunate to have such dedicated physicians which I believe are making strides one patient at a time.

I contacted Weisenthal Cancer Group out of sheer frustration with the "Red Tape". I was shocked that Dr. Weisenthal called me and gave me some suggestions. This is the way things should work and I have nothing but the highest regards for this group. From our conversation, I did make headway and if my mom needs a paracentesis, I think we will be ready to ship the sample out of state without a hitch.

It is my understanding that ascites caused from malignant cells can be considered "malignant effluent." If anyone has any questions about tissue size or sample, please consider contacting the company and speaking with one of their representatives. I am carrying around a mailing kit and will take it to radiology to be sure the kit isn't "lost" before we get there. Quality of sample is more important than quantity. In other words, getting a small sample with large number of cancer cells will be more useful than getting a large sample with few cells. But, please contact the company you decide to work with for any questions or concerns.

I am myself a breast cancer survivor (celebrating 10 years). If I ever have any reoccurrence, one of the first things I will do is to be sure to get functional profiling done. It is one of the few things that makes sense to me!

Thank you for your help. I agree It is most important to keep her comfortable. And, we are trying to be sensitive to her wants and needs. She is definitely a fighter and I hope that I have inherited those genes! Dina

good4us
Posts: 16
Joined: Nov 2011

Hi Laurel (and all),

I have contacted Rational Therapeutics because I saw the information about Tina Brutsch who has had great success with them from her testimonial. They are a fantastic group. When I had difficulty figuring out how to get a sample out of the State of FL and kept hitting road blocks so I dropped it for awhile.

Dr. Nagourney (Raitonal Therapuetics) and Dr. Weisenthal (Weisenthal Cancer Group), used to work together and I believe started Onocotech. They sold the company in the early 90s and both went their separate ways. We are fortunate to have such dedicated physicians which I believe are making strides one patient at a time.

I contacted Weisenthal Cancer Group out of sheer frustration with the "Red Tape". I was shocked that Dr. Weisenthal called me and gave me some suggestions. This is the way things should work and I have nothing but the highest regards for this group. From our conversation, I did make headway and if my mom needs a paracentesis, I think we will be ready to ship the sample out of state without a hitch.

It is my understanding that ascites caused from malignant cells can be considered "malignant effluent." If anyone has any questions about tissue size or sample, please consider contacting the company and speaking with one of their representatives. I am carrying around a mailing kit and will take it to radiology to be sure the kit isn't "lost" before we get there. Quality of sample is more important than quantity. In other words, getting a small sample with large number of cancer cells will be more useful than getting a large sample with few cells. But, please contact the company you decide to work with for any questions or concerns.

I am myself a breast cancer survivor (celebrating 10 years). If I ever have any reoccurrence, one of the first things I will do is to be sure to get functional profiling done. It is one of the few things that makes sense to me!

Thank you for your help. I agree It is most important to keep her comfortable. And, we are trying to be sensitive to her wants and needs. She is definitely a fighter and I hope that I have inherited those genes! Dina

good4us
Posts: 16
Joined: Nov 2011

Hi Laurel (and all),

I have contacted Rational Therapeutics because I saw the information about Tina Brutsch who has had great success with them from her testimonial. They are a fantastic group. When I had difficulty figuring out how to get a sample out of the State of FL and kept hitting road blocks so I dropped it for awhile.

Dr. Nagourney (Raitonal Therapuetics) and Dr. Weisenthal (Weisenthal Cancer Group), used to work together and I believe started Onocotech. They sold the company in the early 90s and both went their separate ways. We are fortunate to have such dedicated physicians which I believe are making strides one patient at a time.

I contacted Weisenthal Cancer Group out of sheer frustration with the "Red Tape". I was shocked that Dr. Weisenthal called me and gave me some suggestions. This is the way things should work and I have nothing but the highest regards for this group. From our conversation, I did make headway and if my mom needs a paracentesis, I think we will be ready to ship the sample out of state without a hitch.

It is my understanding that ascites caused from malignant cells can be considered "malignant effluent." If anyone has any questions about tissue size or sample, please consider contacting the company and speaking with one of their representatives. I am carrying around a mailing kit and will take it to radiology to be sure the kit isn't "lost" before we get there. Quality of sample is more important than quantity. In other words, getting a small sample with large number of cancer cells will be more useful than getting a large sample with few cells. But, please contact the company you decide to work with for any questions or concerns.

I am myself a breast cancer survivor (celebrating 10 years). If I ever have any reoccurrence, one of the first things I will do is to be sure to get functional profiling done. It is one of the few things that makes sense to me!

Thank you for your help. I agree It is most important to keep her comfortable. And, we are trying to be sensitive to her wants and needs. She is definitely a fighter and I hope that I have inherited those genes! Dina

good4us
Posts: 16
Joined: Nov 2011

Hi Laurel (and all),

I have contacted Rational Therapeutics because I saw the information about Tina Brutsch who has had great success with them from her testimonial. They are a fantastic group. When I had difficulty figuring out how to get a sample out of the State of FL and kept hitting road blocks so I dropped it for awhile.

Dr. Nagourney (Raitonal Therapuetics) and Dr. Weisenthal (Weisenthal Cancer Group), used to work together and I believe started Onocotech. They sold the company in the early 90s and both went their separate ways. We are fortunate to have such dedicated physicians which I believe are making strides one patient at a time.

I contacted Weisenthal Cancer Group out of sheer frustration with the "Red Tape" I was getting from trying to send a sample out of Florida to a lab that does not have a FL license. I was shocked that Dr. Weisenthal called me and gave me some suggestions. This is the way things should work and I have nothing but the highest regard for this group. From our conversation, I did make headway and if my mom needs a paracentesis, I think we will be ready to ship the sample out of state without a hitch.

It is my understanding that ascites caused from malignant cells can be considered "malignant effluent" and, as long as it has enough cancer cells, should provide a viable sample. If anyone has any questions about tissue size or sample, please consider contacting the company and speaking with one of their representatives. I am carrying around a mailing kit and will take it to radiology to be sure the kit isn't "lost" before we get there. Quality of sample is more important than quantity. In other words, getting a small sample with large number of cancer cells will be more useful than getting a large sample with few cells. And, I thin that with different cancers, different tissue sources might be needed....for lymphoma, I believe a lymph node is needed. But, please contact the company you decide to work with for any questions or concerns.

I am myself a breast cancer survivor (celebrating 10 years). If I ever have any reoccurrence, one of the first things I will do is to be sure to get functional profiling done. It is one of the few things that makes sense to me!

Thank you for your help. I agree It is most important to keep her comfortable. And, we are trying to be sensitive to her wants and needs. She is definitely a fighter and I hope that I have inherited those genes! Dina

fanniemay
Posts: 52
Joined: Nov 2011

Hi, Please check back in the posts to see the posts for UPSC. What stage was your mom when she was initially diagnosed? I believe that makes a big difference from what I have heard from other ladies. No one is really a clean slate even if you are given the status of 1A.... it still can re-accure. I am having 6 chemo and 3 radiation. I am surprised your onco went with only 3 chemos. They used to recommend 3 chemos now they recommend 6 carbo/taxel. Prayer has been a real help for me. God bless you and your mom. You are a wonderful daughter for caring so much!

good4us
Posts: 16
Joined: Nov 2011

Thank you. I am still trying to learn how to navigate this site! :) My mom had about 3 or 4 cycles of Carbo/Taxol but they dropped the Carbo because her platelets were low. She failed Taxol alone (had numerous cycles), then did 3 cycles of Adriamycin.

Prayer is important. I know that no matter what we must face, God gives us the strength to get through and He gives us hope. Thank you for your kind words!

good4us
Posts: 16
Joined: Nov 2011

Thank you. I am still trying to learn how to navigate this site! :) My mom had about 3 or 4 cycles of Carbo/Taxol but they dropped the Carbo because her platelets were low. She failed Taxol alone (had numerous cycles), then did 3 cycles of Adriamycin.

Prayer is important. I know that no matter what we must face, God gives us the strength to get through and He gives us hope. Thank you for your kind words!

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