Rount Three Of The Match
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I feel like an ex-con who couldn’t stay out of trouble in a polite civilian society.
My cancer came back after short three months of remission. It was confirmed last week. I had a suspicion from mid August, so when the routine follow up scan results came back positive, I was disappointed, but not surprised. I was already mentally prepared to deal with these results, and had a list of questions to ask the doctor right then and there. In fact, if the routine scan had not been scheduled right around the corner, I would have asked for one.
I knew all along that the odds are near 100% that I would recur within a few years, but I was hoping for a longer remission. Obviously, this is quite disappointing – a hard pill to swallow. What really surprised me was not that it recurred so soon after I got into remission, but how fast it happened. Early August, all the test results were clean. I felt great with everything in perfect order. By mid August, I already knew that something was off. Usually, when women recur, the cancer blood marker starts to rise and it takes several months before anything shows up on the scan. My cancer moved from zero to 100 miles/hour in at most 3 weeks to show scattered tumors in the abdominal and pelvic areas. I am a Type A personality overachiever. So is my cancer. We are well matched.
A case like mine is particularly troublesome since it recurred so fast and so soon after the initial remission. On the book, this worsens my prognosis considerably. The initial diagnosis and sub optimal surgery results already earned me a place in the high risk group. With this recurrence, now my membership has been upgraded to the “elite” status – the Platinum Class. Among the ovarian and uterine cancer survivors, being labeled “platinum resistant” is like having a scarlet letter stamped on our forehead. No, Marie Antoinette won’t be able to advise us to wear gold instead. It’s a term to describe a condition in which the most powerful combination of drugs that contain platinum is no longer deemed effective, and one clear criterion they use for qualification is recurrence within six months of remission induced by platinum class drugs. The implication is clear – the prognosis nose dives.
If there were a certification process for clinical depression, I would pass it with flying colors with this recurrence. I have done everything right on the book - nutrition, exercise, supplements, etc. So what else can I do? I used up all the arsenals in my armory. There is no more arrow left in my quiver. No magic bullet that I can dispense. Perhaps cancer has already won, not only the individual battles, but the whole war that will end all other wars.
And yet, after a few days of whirlwind of activities - doctor's visit, scans, and blood works, plus my thoughts all over the place, I am actually serene and yes, dare I even say "optimistic". I am in an oddly calm and uplifting and uplifted mood. I feel that there is still so much I can do, and so much more to try. I must say, though, my definition of optimism has undergone a slight revision. The target of optimism no longer includes ONLY a long life: it now has other subtle nuances. Such as grace, dignity, and an ability to reconstruct bits of potentially harsh reality into something affirmative, not only for myself, but for those around me. I am optimistic that I can achieve all that.
Yes, realistically enough, what’s in store for me may not be what I had hoped for. But I am optimistic even there because no matter what happens, I will know that I did my best and I did it with dignity and grace. I can look at my recurrence as a calamity or as an improvement to the original game plan. I was not even supposed to go into remission when I did: my starting point was very grim, and the expectation was, it will take much more than the standard length treatment to put me in remission. So, I choose to look at my current situation as the original scenario plus an unexpected vacation and respite in the middle of what was supposed to be a long treatment anyway.
So, round 1, Me: 1, Cancer 0. Round 2: Me: 0, Cancer 1. So we are even so far. Now we are starting the third round, and I believe realistically there will be more rounds, hopefully. As long as I don't get carried out of ring completely KO'ed, I will continue this match as long as it makes sense. And, call me a fool, I have a very good feeling that I will win the round 3. I don’t think I have a KO punch for my opponent that will end the match with me as an undisputed winner. But, that’s not the only way to win the match. All I need is just one more round of victory than my opponent. That, I think I can do. You can call me an incorrigible optimist, but I dare say, I am a rational optimist. Today, at my doctor’s office, I asked him about my prognosis. I said, “you know, I have a lot of bridges to burn and I don’t want to start burning them too soon!” He said, it all depends on how I respond to the next line of therapy. So, onward, comrades!
Another thing that has undergone somewhat of a change is my attitude toward the whole philosophy of delay of gratification. I used to consider my principled discipline for delay of gratification for now for something better in the future to be the foremost virtue that I possess. I even managed to brainwash my kids into internalizing that value. Well, I am in a mood to allow myself to be a bit more "live here and now" and not sacrifice 100% of what's pleasurable for the future goal. I may even buy clothes that are not on sale. I used to wait for 70-80% discount, not because of money per se, but out of principle. Even so, I am still planning for a major professional move that will take several years of hard work to reach the next stage. The plan of record is still the same though I may have to delay the onset of the execution depending on how I do with the new treatment.
When I had my suspicion of recurrence confirmed, the first thing that came to me was the sense of gratitude. Gratitude because,
• It's me, not my husband or kids
• It's happening now, not a few years ago when my kids were still sorting their own adolescence issues
• I have my loving family and friends around me.
• I am still so otherwise healthy and vital that I can deal with punishing chemo or whatever they have to dish out to me.
• I have the presence of mind to cope with what could be unbendingly grim news.
• I have access to the very best medical facilities, many of them, all within 40 miles of distance.
• I have the resources to allow me to navigate through a lot of issues
• I did not go for the professional opportunity that would have been mine a few months back - it was a dream job with glamour galore, but I had a good sense of not taking it because it would put me on the road three weeks out of a month all over the world.
Last, not but the least, I am very grateful that I was offered an opportunity to participate in a new trial at MSKCC (Memorial Sloan Kettering Cancer Center). Perhaps some of you remember that I was participating in a vaccine trial for high risk women in their first remission at MSKCC. Well, I flamboyantly flunked out of this trial by inconsiderately recurring so soon. Yet, Dr. S. who is in charge of that failed trial, offered to put me on a new trial for women who recurred very soon after the initial remission. Not only he is a young and handsome dude, he has a good heart!
This is a major break for me. The trial involves a drug called Doxil plus an experimental drug that enhances body’s immune functions. Doxil is the best treatment option for women like me. The problem is, Doxil is not to be had anywhere in USA presently due to the scandalous cancer drug shortage situation, and there is no indication when it will be available again: rumor has it, not until next spring! It turns out MSKCC has ONE full treatment dose of Doxil left for the last trial patient, and Dr. S offered it to me. I consulted with several doctors, including my primary gynecologic oncologist who diagnosed me, operated on me, and saw me through the front line chemo therapy, and all of them told me to jump right in with both feet if anyone is offering Doxil to me.
I really need to succeed in this second trial. If I fail again, I am afraid I will be known as a kiss of death at MSKCC – the patient who ruins all of their clinical trials - and will be blacklisted! Humor aside, I really lucked out with this Doxil trial. I start the first treatment next Monday. It’s a very arduous trial with very time consuming commitment. I will be spending a lot of days in NYC. During some of these days, I will be jailed in their chemo suite for close to 10 hours during which time they will draw my blood every other hour after they administer the drugs. This is because I am a trial subject, and they need my blood for research purposes. I will have a legion of vampires. These days, everybody is after my blood, literally! I can’t count how many times I have been poked just past few days to confirm my recurrence and to prep me for the new trial.
I know I will be very well cared for. Besides the team at MSKCC, I will also be monitored by a dear friend of mine who is an ob/gyn, and who follows up with all her patients who developed cancer. She will be my quarterback. Of course, I can’t leave my first love out – Dr S. in NJ who diagnosed me, operated on me, and saw me through the initial treatment that put me in remission. Yesterday, during my consultation with him, I discussed how I should be also monitored by him for continuity. I said "Dr. at MSKCC is a young and handsome dude, but you are my first love, so I will keep coming back to you". He laughed - Laughed! This is a guy I coded named “Grumpy Frog” who hardly ever smiles, let alone laughs. He scares the hell out of residents, interns, and nurses. I bet I achieved something no other patient of his ever achieved. I hit a home run yesterday. This is a good way to start the new round.
Somehow, in the midst of all this, I feel that I am being taken care of by more than the usual suspects of doctors, friends, and family members. I fell into the abyss again, but I see a rope being thrown at me to climb my way out by. I feel surrounded by energy that infuses me with a sense of hope and optimism that is so incongruent with the objective assessment of my current situation. I thought of it as a survival instinct – that is, my mind knows that in order to survive through this, I need a sense of hope, a positive outlook, so that it instinctively infused my conscious mind with this optimism and clearheaded calmness to make all the necessary decision unclouded by negative emotions. Is it really that simple though? Perhaps there is something more to this. If I were a religious person, I would call it God’s grace. If I were a new age spiritualist, I would call it a guiding spirit. If I were a shamanist, I would call it a spirit of ancestors. I don’t know what it is or where it came from, but I can visualize it.
I am standing in a room naked and vulnerable. My opponent donned a flash costume of nails and spikes sticking out all over. It is putting on a scary show of shock and awe with all the appropriate sound and light special effects spreading doom and gloom. I see a little girl in the corner. She reaches out to me saying “I may look frail, but I am much stronger than that. Don’t give up on me. I won’t fail you”. She offers her hand, and I take it. Together we stand. I don’t know what to call her, or who she is. But I am comforted by her presence. Somehow, I am not afraid anymore. We take one step forward hand in hand ……
Comments
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You're awesomeminniejan said:thank you
Thank you with intense gratitude for sharing this. There is no way or no words to add to your amazingly brave and eloquent post other than to say we support you.
With love, Minniejan
I so admire your strength, courage and resolve to never give up and continue the good fight. Your opponent should be shaking in his spiky hobnailed boots.......he has met his match.
I will pray for you.....for your success during this trial and for a very long remission that turns into a total cure when you're done.
Your family and friends must be incredibly proud of you....as am I. Please keep us updated on your progress whenever you can.
Sending love and light,
Diane0 -
Optimistminniejan said:thank you
Thank you with intense gratitude for sharing this. There is no way or no words to add to your amazingly brave and eloquent post other than to say we support you.
With love, Minniejan
As I read your moving essay, my heart is heavy and my eyes welled up. I think you are amazing!!! Truly amazing and I thank you too.
I'm so glad you are at peace and have so much gratitude and that your hope and optimism is still very much alive. What a story about the Doxil. You are well worth this precious elixir!!!!!
You are "fighting the good fight" and may there be a fourth round for you to continue to bless us (this world of ours) with your gifts. You are intelligent and hard-working and diligent in your battle. I do encourage you to check out this one thing (the Type A personality alerted me!!) - the book, "Getting Well Again" by O. Carol Simonton, MD (radiology oncologist) helped me so much. He did research on people beyond the "Platinum Club" - those for which there remained no other options and were given up for dead. Results of his studies showed amazingly long remissions and improved quality of life for many. Simonton is a pioneer in the mind-body concept in our Western culture. Written in the 70's it's still in print and is available for 1 cent at Amazon!!! He died not too long ago and leaves behind an institute in CA. I believe, if you add his strategies to your already vigorous regime, that you will be rewarded immensely. I followed the book exactly and did what he said, when he said it, and got so much from this book. Enough said.
And I will share some more hope for you - two people I personally know with grave cancers (liver and stomach) who were both given up for dead and are both enjoying tremendously happy and healthy lives decades after given an imminent death sentence. It's not over til its over.
Virtual hugs to you ((((Optimist)))). Take heart and God speed. May you win not only round 3 but the entire competition. My prayers are with you, friend.
Sincerely, Mary Ann0 -
Oh, sweet girl, I hear you. I know that strange peace too well.daisy366 said:Optimist
As I read your moving essay, my heart is heavy and my eyes welled up. I think you are amazing!!! Truly amazing and I thank you too.
I'm so glad you are at peace and have so much gratitude and that your hope and optimism is still very much alive. What a story about the Doxil. You are well worth this precious elixir!!!!!
You are "fighting the good fight" and may there be a fourth round for you to continue to bless us (this world of ours) with your gifts. You are intelligent and hard-working and diligent in your battle. I do encourage you to check out this one thing (the Type A personality alerted me!!) - the book, "Getting Well Again" by O. Carol Simonton, MD (radiology oncologist) helped me so much. He did research on people beyond the "Platinum Club" - those for which there remained no other options and were given up for dead. Results of his studies showed amazingly long remissions and improved quality of life for many. Simonton is a pioneer in the mind-body concept in our Western culture. Written in the 70's it's still in print and is available for 1 cent at Amazon!!! He died not too long ago and leaves behind an institute in CA. I believe, if you add his strategies to your already vigorous regime, that you will be rewarded immensely. I followed the book exactly and did what he said, when he said it, and got so much from this book. Enough said.
And I will share some more hope for you - two people I personally know with grave cancers (liver and stomach) who were both given up for dead and are both enjoying tremendously happy and healthy lives decades after given an imminent death sentence. It's not over til its over.
Virtual hugs to you ((((Optimist)))). Take heart and God speed. May you win not only round 3 but the entire competition. My prayers are with you, friend.
Sincerely, Mary Ann
You brought tears to my eyes, kiddo. If you need someone who has been where you are, please feel free to reach out to me. I had only 1 clear CT scan after I completed my adjuvant treatments back in 2009, and by the next 3-month scan, I learned my cancer had recurred. We had such high hopes that I was cured, as I felt so wonderful and had just returned from a celebration trip to Greece and Turkey. I felt that strange calmness you describe, but the reaction from my family and friends was heart wrenching, like attending my own funeral. One after another fell into my arms sobbing and I had to go over and hold my little granddaughter until she fell asleep because she wouldn't stop crying. TWO YEARS AGO. That's my message to you here, TWO YEARS AGO. I'm still here. A bit battle-scarred, but still here, grim statistical survival rates be damned.
There's a new goal here, honey. You're in an exciting and promising clinical trial. And you just need to stay alive long enough to be here for the NEXT new innovation that will buy you another couple of years. And you just keep leap-frogging your way to old age in these little chunks of time. In my 3-year cancer journey I've already taken advantage of so many new treatment protocols and advances. PET scans were approved for uterine cancer 1 year into my journey. Avastin went from 'too experimental' to something my oncologist later prescribed for me. Dense-dose weekly taxol was a new protocol in 2010 that brought me into my 2nd short remission. Tamoxifen and megace were thought to be ineffective for women with ER- and PR- cancer, but a new study that came out in early 2011 showed that in a certain combination, for some unknown reason, a combination of these 2 drugs DID work for ER-/PR- women 23% of the time, and those little pills held my lymph node cancer mets stable all this summer. And the radioembolism I had this summer for my liver mets is still not FDA-approved for gynecologic cancers but it is showing such promise for radiation-sensitive cancers like uterine cancer. So I am a little frog with you, buying my time on this earth in small chunks with one new innovation or 'old standard' after the next, leap-frogging my way to old age. And so can you.
There is a VERY new protocol that looks promising that works to REVERSE platinum-sensitivity and chemo-resistance by giving a DAILY tiny chemo dose. They don't do it where I get treatment, (and DAILY Chemo sounds like a LOT of interruption in your life!) but if I run out of options, I will track this down as my next 'big move'.
In April when I last saw my chemo oncologist, after my latest chemo combo allowed disease progression again, he asked me, "what do you want to do now?" And I said "I just want to have a nice spring & summer." My husband didn't like the look in our eyes during that exchange and started pushing for a referral for liver-specific treatments. And so I've been off chemo since then in order to do the 3 radioembolism surgeries/treatments this spring and summer. I really meant it when I said I just wanted a nice spring and summer; I thought that was probably what time I had left. And yet, here it is, FALL, and I am still here, having leap-frogged myself into another little block of time. I am at peace with my cancer journey, however it plays out. But you have every reason to remain optimistic, dear one. This adventure is far from over. Embrace the peace and Zen that comes from facing your own mortality. You're gonna be fine, whatever happens. I feel the strength in you. Deep breath; chin up; game face on. (((Huge hugs))).0 -
Hate to read of your
Hate to read of your recurrence, however glad you are going to be able to have the Doxil. My secret fear is to go to the doctor and find out there is nothing more to be done. I think Linda it right when she said we can leap from one treatment to the next.
Will be thinking of you and praying for you. You are a brave lady.0 -
Optimist, sorry to hear of your recurrence
I am saddened to read your post, but yet happy to hear there is another plan in place for you. How fortunate for you to be able to get Doxil. I pray that it will work for you. Glad you are at peace. You will remain in my prayers. In peace and caring.0 -
postRo10 said:Optimist, sorry to hear of your recurrence
I am saddened to read your post, but yet happy to hear there is another plan in place for you. How fortunate for you to be able to get Doxil. I pray that it will work for you. Glad you are at peace. You will remain in my prayers. In peace and caring.
What a courageous post. Thank you. May your optimism be rewarded a hundred-fold. Take care of you — and let us know how you are doing if you can. We will all be holding you close in our thoughts.0 -
linda,lindaprocopio said:Oh, sweet girl, I hear you. I know that strange peace too well.
You brought tears to my eyes, kiddo. If you need someone who has been where you are, please feel free to reach out to me. I had only 1 clear CT scan after I completed my adjuvant treatments back in 2009, and by the next 3-month scan, I learned my cancer had recurred. We had such high hopes that I was cured, as I felt so wonderful and had just returned from a celebration trip to Greece and Turkey. I felt that strange calmness you describe, but the reaction from my family and friends was heart wrenching, like attending my own funeral. One after another fell into my arms sobbing and I had to go over and hold my little granddaughter until she fell asleep because she wouldn't stop crying. TWO YEARS AGO. That's my message to you here, TWO YEARS AGO. I'm still here. A bit battle-scarred, but still here, grim statistical survival rates be damned.
There's a new goal here, honey. You're in an exciting and promising clinical trial. And you just need to stay alive long enough to be here for the NEXT new innovation that will buy you another couple of years. And you just keep leap-frogging your way to old age in these little chunks of time. In my 3-year cancer journey I've already taken advantage of so many new treatment protocols and advances. PET scans were approved for uterine cancer 1 year into my journey. Avastin went from 'too experimental' to something my oncologist later prescribed for me. Dense-dose weekly taxol was a new protocol in 2010 that brought me into my 2nd short remission. Tamoxifen and megace were thought to be ineffective for women with ER- and PR- cancer, but a new study that came out in early 2011 showed that in a certain combination, for some unknown reason, a combination of these 2 drugs DID work for ER-/PR- women 23% of the time, and those little pills held my lymph node cancer mets stable all this summer. And the radioembolism I had this summer for my liver mets is still not FDA-approved for gynecologic cancers but it is showing such promise for radiation-sensitive cancers like uterine cancer. So I am a little frog with you, buying my time on this earth in small chunks with one new innovation or 'old standard' after the next, leap-frogging my way to old age. And so can you.
There is a VERY new protocol that looks promising that works to REVERSE platinum-sensitivity and chemo-resistance by giving a DAILY tiny chemo dose. They don't do it where I get treatment, (and DAILY Chemo sounds like a LOT of interruption in your life!) but if I run out of options, I will track this down as my next 'big move'.
In April when I last saw my chemo oncologist, after my latest chemo combo allowed disease progression again, he asked me, "what do you want to do now?" And I said "I just want to have a nice spring & summer." My husband didn't like the look in our eyes during that exchange and started pushing for a referral for liver-specific treatments. And so I've been off chemo since then in order to do the 3 radioembolism surgeries/treatments this spring and summer. I really meant it when I said I just wanted a nice spring and summer; I thought that was probably what time I had left. And yet, here it is, FALL, and I am still here, having leap-frogged myself into another little block of time. I am at peace with my cancer journey, however it plays out. But you have every reason to remain optimistic, dear one. This adventure is far from over. Embrace the peace and Zen that comes from facing your own mortality. You're gonna be fine, whatever happens. I feel the strength in you. Deep breath; chin up; game face on. (((Huge hugs))).
as usual, your
linda,
as usual, your wisdom and compassion move me. thank you so much.
Yes, I have accepted the fact that this cancer is a chronic condition for me. Like you, I hope to stay just one step ahead.
You are an inspiration to us all. Please understand that in addition to your emotional support, your research is literally saving a lot of women by opening their eyes to a lot of options.
PS. I am Er +, Pr+ and Her +. You mentioned in some other post that Herceptin (sp?) might be another drug I can consider since I am Her+. I asked my dr. about this and he said he doesn't know about that. Well, at this point, since I am on a trial, I have to follow their protocol exactly, but it's good to know that in case Doxil does not work, I have other arsenals in my armory.0 -
Your innate strength and
Your innate strength and determination emanate from your post. They will carry you far on this journey. And it is a journey. May you have far to travel before you reach the destination. I had so hoped you had truly beaten this, so apparently successful was your first fight. But many options remain, many different roads you can travel. The opportunity available at this momentbwhen you most need it to have the Doxil available is truly amazing. May you find success with this. I am two years out from my first recurrence but I no longer worry about being NED and just go from treatment to a break and then the next round. I like you started this at Stage 4B and that journey began nearly 4 years ago. I am equivocally HER+ and possibly Pr+ as well and theseb issues are just now being considered as possible treatment routes.
When we first finish that initial treatment it seems the battle was won and life can begin anew. Then we discover a new way of life with a series of battles, and accept it will be a longterm war with battles interspersed with R&R. You have the resources to see this through. Enjoy each and every day whether in battle or enjoying every moment of joy along the way.
Annie0 -
Thinking of youevertheoptimist said:linda,
as usual, your
linda,
as usual, your wisdom and compassion move me. thank you so much.
Yes, I have accepted the fact that this cancer is a chronic condition for me. Like you, I hope to stay just one step ahead.
You are an inspiration to us all. Please understand that in addition to your emotional support, your research is literally saving a lot of women by opening their eyes to a lot of options.
PS. I am Er +, Pr+ and Her +. You mentioned in some other post that Herceptin (sp?) might be another drug I can consider since I am Her+. I asked my dr. about this and he said he doesn't know about that. Well, at this point, since I am on a trial, I have to follow their protocol exactly, but it's good to know that in case Doxil does not work, I have other arsenals in my armory.
There's not much more I can add to what has already been said very eloquently by the other ladies. Your post brought me to tears - it seems such a bitter blow to have done so well and now to face recurrence so soon. But, as Linda says, perhaps the path is now to leap-frog forward, utlilising new treatments as they emerge, to keep this spiked beast at bay.
Your attitude is amazing and we're all here, hoping and praying for you
Helen0 -
insightupsofloating said:Your innate strength and
Your innate strength and determination emanate from your post. They will carry you far on this journey. And it is a journey. May you have far to travel before you reach the destination. I had so hoped you had truly beaten this, so apparently successful was your first fight. But many options remain, many different roads you can travel. The opportunity available at this momentbwhen you most need it to have the Doxil available is truly amazing. May you find success with this. I am two years out from my first recurrence but I no longer worry about being NED and just go from treatment to a break and then the next round. I like you started this at Stage 4B and that journey began nearly 4 years ago. I am equivocally HER+ and possibly Pr+ as well and theseb issues are just now being considered as possible treatment routes.
When we first finish that initial treatment it seems the battle was won and life can begin anew. Then we discover a new way of life with a series of battles, and accept it will be a longterm war with battles interspersed with R&R. You have the resources to see this through. Enjoy each and every day whether in battle or enjoying every moment of joy along the way.
Annie
Optimist, I would like to ask you, in a delicate way, to tell us why you thought something was wrong so soon after you had had a clean scan? Did you feel sick, have bleeding? This would be very helpful information for those of us who worry about every ache and pain.
For example, last summer, just before my diagnosis, my hair hurt - on the top of my head - when I touched it. I finally went to my doctor, who saw something there that made her send a sample off for a biopsy, which was negative. But after my diagnosis I wondered if that had been a signal that something was wrong inside my body. My hair is hurting again and that makes me nervous. Like I said, I worry about every ache and pain........
Thanks for any help/info
JOANN0 -
JoAnn, I don't mindJoAnnDK said:insight
Optimist, I would like to ask you, in a delicate way, to tell us why you thought something was wrong so soon after you had had a clean scan? Did you feel sick, have bleeding? This would be very helpful information for those of us who worry about every ache and pain.
For example, last summer, just before my diagnosis, my hair hurt - on the top of my head - when I touched it. I finally went to my doctor, who saw something there that made her send a sample off for a biopsy, which was negative. But after my diagnosis I wondered if that had been a signal that something was wrong inside my body. My hair is hurting again and that makes me nervous. Like I said, I worry about every ache and pain........
Thanks for any help/info
JOANN
JoAnn,
I don't mind answering your question.
I started to have a sensation of bloatedness. I had the same feeling when I was diagnosed. I did have ascites, but this was in addition to the ascites. Of course, at that time, I did not know what it was. Now, I know. Starting around mid August, I noticed that I was gaining weight due to water retention. My weight at the beginning of August was 110-111 pounds. Since then I gained about 8 pounds. I know this is not a fat weight gain. I also remember that right around the time I was initially diagnosed last year, my TSH (thyorid hormone level) sky rocketed (meaning, severe hypothyroid condition) even though for all these years the med I was on was successfully keeping it under control. When the scan results came back worrisome, I asked them check THS again. Lo and hehold. It's trough the roof again. There is literature that shows hypothyroid condition worsening due to cancer. Note that TSH measured in middle of July was too low, which, if anything, put me on the hyperthyroid category. One of the effects of severe hypothyroidism is water retention. I think it all makes sense now.
I have a gold plated insurance plan: I can get as many tests as my doctor wants me to get. I talked my PCP into giving me a prescription for CA125 and TSH at the same time every three weeks. I am going to personally measure these two numbers from now on every three weeks on top of all the tests the MSKCC clinical trial team performs on me. The relationship between CA125 and TSH is not one of the factors they are monitoring as part of the trial. I will collect data on myself. If I see concomitant movement of these numbers (either up or down, hopeful down), I know that personally, going forward, they should check both numbers for me as part of the follow up routine - as part of the diagnostic tool.0 -
Just my opinionevertheoptimist said:JoAnn, I don't mind
JoAnn,
I don't mind answering your question.
I started to have a sensation of bloatedness. I had the same feeling when I was diagnosed. I did have ascites, but this was in addition to the ascites. Of course, at that time, I did not know what it was. Now, I know. Starting around mid August, I noticed that I was gaining weight due to water retention. My weight at the beginning of August was 110-111 pounds. Since then I gained about 8 pounds. I know this is not a fat weight gain. I also remember that right around the time I was initially diagnosed last year, my TSH (thyorid hormone level) sky rocketed (meaning, severe hypothyroid condition) even though for all these years the med I was on was successfully keeping it under control. When the scan results came back worrisome, I asked them check THS again. Lo and hehold. It's trough the roof again. There is literature that shows hypothyroid condition worsening due to cancer. Note that TSH measured in middle of July was too low, which, if anything, put me on the hyperthyroid category. One of the effects of severe hypothyroidism is water retention. I think it all makes sense now.
I have a gold plated insurance plan: I can get as many tests as my doctor wants me to get. I talked my PCP into giving me a prescription for CA125 and TSH at the same time every three weeks. I am going to personally measure these two numbers from now on every three weeks on top of all the tests the MSKCC clinical trial team performs on me. The relationship between CA125 and TSH is not one of the factors they are monitoring as part of the trial. I will collect data on myself. If I see concomitant movement of these numbers (either up or down, hopeful down), I know that personally, going forward, they should check both numbers for me as part of the follow up routine - as part of the diagnostic tool.
I think that you deserve a chemo assay before someone throws another chemo at you. I'm saying this based on a friend's experience with ovarian cancer where the scan looked good and the CA-125 was low x three months then it started climbing very aggressively again.
She opted to go to a cancer clinic in Tijuana where a chemo assay was done and the platinum chemo was used again (as insulin-potentiated chemo). She said that she thinks that the chemo was working because the area where the cancer recurred hurt again just as it did the first time carboplatinum was given.
It is possible that your cancer shrunk to below the detection limit and you were never in remission in the first place--therefore, you might consider that you could go back to the platinum-based chemo and do well. Or you might not have time to wait for the results of a chemo assay (about two weeks). I think your malignant ascites could be used for analysis and you could start on whatever other chemo while you are awaiting results.
Medicare stopped paying for chemo assays so a lot of oncologists have moved away from doing them. That doesn't mean that a chemo assay isn't valid.
Carolen0 -
carolen,carolenk said:Just my opinion
I think that you deserve a chemo assay before someone throws another chemo at you. I'm saying this based on a friend's experience with ovarian cancer where the scan looked good and the CA-125 was low x three months then it started climbing very aggressively again.
She opted to go to a cancer clinic in Tijuana where a chemo assay was done and the platinum chemo was used again (as insulin-potentiated chemo). She said that she thinks that the chemo was working because the area where the cancer recurred hurt again just as it did the first time carboplatinum was given.
It is possible that your cancer shrunk to below the detection limit and you were never in remission in the first place--therefore, you might consider that you could go back to the platinum-based chemo and do well. Or you might not have time to wait for the results of a chemo assay (about two weeks). I think your malignant ascites could be used for analysis and you could start on whatever other chemo while you are awaiting results.
Medicare stopped paying for chemo assays so a lot of oncologists have moved away from doing them. That doesn't mean that a chemo assay isn't valid.
Carolen
Assay testing is
carolen,
Assay testing is definitely something I was thinking about, and if Doxil trial fails, I am planning to do that.
The reason why I am not waiting to do assay testing is, none of my tumors now are big enough to do needle biopsy access. They said, even if they do surgery, collectively the total won't be enough for assay testing - currently tumor are in mm rather cm. Besides, I am very reluctant to go through surgery that is NOT therapeutic, but just for sample collection for assay testing. (everybody agreed, including my dear friend who is an OB/GYN who is quarter backing my care, agrees that the surgery won't have a therapeutic value. Mine is spreading through scattered seeding via a microscopic floating cells and after the surgery, while I am waiting to recover, new tiny tumors will implant. I need systemic approach - aka chemo now).
Furthermore, this Doxil trial option is now or never. THis is the last full course treatment dosage left at MSKCC for a last trial patient. So, what if I do assay testing and it showed that Doxil is the best choice. Well, there will be not way to get it. They are saying the shortage may last till next spring, and what little that my trickle down now is for women who were already on it before they were taken off due to the shortage.
By the way, regarding whether I was truly in remission, I completely agree with you. Many women with optimal debulking outcome and just microscopic cancer cells, when they are in remission, it's not clear whether it's because the drug worked THAT WELL. So, maybe they were not actually that platinum sensitive to begin with just lowering CA125 is not that difficult to do when there is no tumor load to work with - no way to tell. In my case, my chemo worked so well it melted away a large lime sized tumor away plus myriad of smaller tumors that couldn't be surgically removed. I had A LOT OF TUMOR LOAD to work with. It could very well be the case that I am NOT platinum resistant. Rather, I needed just longer treatment. Well, if it's that the case, that's a good news, isn't if? I will have more options later In fact, my doctor said, he would NOT rule out platinum drugs sometime down the road, though this time around so soon after the the short lived remission, he would rather use something else, like Doxil.
My plan is to go with this trial that gives me Doxil plus an experimental drug, and if it does not work, do assay testing (by that time, there will be more tumor to "harvest") and go from there.0 -
Thank you for sharing theevertheoptimist said:JoAnn, I don't mind
JoAnn,
I don't mind answering your question.
I started to have a sensation of bloatedness. I had the same feeling when I was diagnosed. I did have ascites, but this was in addition to the ascites. Of course, at that time, I did not know what it was. Now, I know. Starting around mid August, I noticed that I was gaining weight due to water retention. My weight at the beginning of August was 110-111 pounds. Since then I gained about 8 pounds. I know this is not a fat weight gain. I also remember that right around the time I was initially diagnosed last year, my TSH (thyorid hormone level) sky rocketed (meaning, severe hypothyroid condition) even though for all these years the med I was on was successfully keeping it under control. When the scan results came back worrisome, I asked them check THS again. Lo and hehold. It's trough the roof again. There is literature that shows hypothyroid condition worsening due to cancer. Note that TSH measured in middle of July was too low, which, if anything, put me on the hyperthyroid category. One of the effects of severe hypothyroidism is water retention. I think it all makes sense now.
I have a gold plated insurance plan: I can get as many tests as my doctor wants me to get. I talked my PCP into giving me a prescription for CA125 and TSH at the same time every three weeks. I am going to personally measure these two numbers from now on every three weeks on top of all the tests the MSKCC clinical trial team performs on me. The relationship between CA125 and TSH is not one of the factors they are monitoring as part of the trial. I will collect data on myself. If I see concomitant movement of these numbers (either up or down, hopeful down), I know that personally, going forward, they should check both numbers for me as part of the follow up routine - as part of the diagnostic tool.
Thank you for sharing the source of your recurrence concerns - a question I had intended to ask as well, since the 'what to look for' concerns us all. Of interest, also, was the info on hypothyroid and cancer as my PCP routinely checks my TSH, etc., and had mentioned a relationship with cancer but I had not queried as to what it was. I have taken med for low thyroid for many years.0 -
Optimistupsofloating said:Thank you for sharing the
Thank you for sharing the source of your recurrence concerns - a question I had intended to ask as well, since the 'what to look for' concerns us all. Of interest, also, was the info on hypothyroid and cancer as my PCP routinely checks my TSH, etc., and had mentioned a relationship with cancer but I had not queried as to what it was. I have taken med for low thyroid for many years.
I'm filled with sadness to read your recurrence. Your posts have been so uplifting for me and encouraging and know this next step in your journey will be no different...you will fight the fight and come out having been a better person.
Nothing in life is easy or do we have a book of steps for life, in this case, you're writing your book and as you gain more encouragement.
You're in my prayers and thoughts as you take your next steps.
Peace be with you my friend....
Jan0 -
Byron was thinking of us...jazzy1 said:Optimist
I'm filled with sadness to read your recurrence. Your posts have been so uplifting for me and encouraging and know this next step in your journey will be no different...you will fight the fight and come out having been a better person.
Nothing in life is easy or do we have a book of steps for life, in this case, you're writing your book and as you gain more encouragement.
You're in my prayers and thoughts as you take your next steps.
Peace be with you my friend....
Jan
She walks in beauty, like the night
SHE walks in beauty, like the night
Of cloudless climes and starry skies,
And all that's best of dark and bright
Meets in her aspect and her eyes;
Thus mellow'd to that tender light
Which Heaven to gaudy day denies.
One shade the more, one ray the less,
Had half impair'd the nameless grace
Which waves in every raven tress
Or softly lightens o'er her face,
Where thoughts serenely sweet express
How pure, how dear their dwelling-place.
And on that cheek and o'er that brow
So soft, so calm, yet eloquent,
The smiles that win, the tints that glow,
But tell of days in goodness spent,—
A mind at peace with all below,
A heart whose love is innocent.0 -
Oh my!paris11 said:Byron was thinking of us...
She walks in beauty, like the night
SHE walks in beauty, like the night
Of cloudless climes and starry skies,
And all that's best of dark and bright
Meets in her aspect and her eyes;
Thus mellow'd to that tender light
Which Heaven to gaudy day denies.
One shade the more, one ray the less,
Had half impair'd the nameless grace
Which waves in every raven tress
Or softly lightens o'er her face,
Where thoughts serenely sweet express
How pure, how dear their dwelling-place.
And on that cheek and o'er that brow
So soft, so calm, yet eloquent,
The smiles that win, the tints that glow,
But tell of days in goodness spent,—
A mind at peace with all below,
A heart whose love is innocent.
I'm so sorry to learn of your recurrence. Thank you for sharing the news with us.
You have definitely done your homework and express your current stage so eloquently. I'm sending my hopes and prayers your way for a successful Round 3.
Best,
Suzanne0 -
Optimist,evertheoptimist said:JoAnn, I don't mind
JoAnn,
I don't mind answering your question.
I started to have a sensation of bloatedness. I had the same feeling when I was diagnosed. I did have ascites, but this was in addition to the ascites. Of course, at that time, I did not know what it was. Now, I know. Starting around mid August, I noticed that I was gaining weight due to water retention. My weight at the beginning of August was 110-111 pounds. Since then I gained about 8 pounds. I know this is not a fat weight gain. I also remember that right around the time I was initially diagnosed last year, my TSH (thyorid hormone level) sky rocketed (meaning, severe hypothyroid condition) even though for all these years the med I was on was successfully keeping it under control. When the scan results came back worrisome, I asked them check THS again. Lo and hehold. It's trough the roof again. There is literature that shows hypothyroid condition worsening due to cancer. Note that TSH measured in middle of July was too low, which, if anything, put me on the hyperthyroid category. One of the effects of severe hypothyroidism is water retention. I think it all makes sense now.
I have a gold plated insurance plan: I can get as many tests as my doctor wants me to get. I talked my PCP into giving me a prescription for CA125 and TSH at the same time every three weeks. I am going to personally measure these two numbers from now on every three weeks on top of all the tests the MSKCC clinical trial team performs on me. The relationship between CA125 and TSH is not one of the factors they are monitoring as part of the trial. I will collect data on myself. If I see concomitant movement of these numbers (either up or down, hopeful down), I know that personally, going forward, they should check both numbers for me as part of the follow up routine - as part of the diagnostic tool.
Thinking of you
Optimist,
Thinking of you and will keep you in my prayers as you go round three.
My best to you,
Kathy0 -
Preventing a Doxil side effectKaleena said:Optimist,
Thinking of you
Optimist,
Thinking of you and will keep you in my prayers as you go round three.
My best to you,
Kathy
Since you will be in a clinical trial, are you restricted from taking over-the-counter supplements? If not, you may want to consider taking co-enzyme Q-10 to protect your heart from damage secondary to Doxil. The minimum amount would be 100mg and, ideally, take 100mg with each meal. Co-Q-10 is "fat soluble" which means you will get the best absorption of it when you take it with food.
Carolen0
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