Radiation Off the Table For Now
So yesterday I had my consultation with radiologist number, let's see, over the course of a year I'm up to #5. We went over the areas that lit up on the PET scan. He explained the stereotactic procedure, said that he could certainly radiate those two areas. But he was recommending that I do chemo again, his concern being that while he could take care of those two lymph nodes, that it was likely that there were other smaller areas that also contain cancer cells that are not large enough to show up on the scan. And essentially, we would have radiated that area for naught if those cells land somewhere else. His suggestion was to do chemo again, do a scan after chemo to see what was going on. If everything is gone, woo hoo, great. If not, then we could consider radiation again. He said if this were a different cancer, his suggestion might be different, but knowing how this cancer likes to recur distantly, his concern is that cells are still buzzing around in other areas.
So my medical oncologist just called me. If I do chemo again, she is recommending gemzar/avastin or doxil. She doesn't think carbo/taxol would be effective since it's been less than a year since I finished chemo. Has anybody in that situation done carbo/taxol again with good results? I mean, I kinda know what to expect with that combo. The devil you know vs. the one you don't.
My head is spinning here. It's almost like getting blind-sided the first time around. I've been feeling great lately, the best I've felt since ending treatment in February. Strong, lots of energy, haven't had any cold or illness since I started chemo over a year ago. Just that sensation of pressure that prompted me to go in in the first place. WTH!?
I had blood work done today, and my ANC is still pretty much where it was when I finished chemo. Everything else is pretty much normal. So of course, that concerns me as well.
Obviously, the decision as to what to do is up to me, but crap. Now I can see why some doctors don't believe in scans except when there are symptoms. I wish I had waited another week, and my "symptom" that prompted me to the doctor would have disappeared. Is this my chance to whack this mole back into the ground for good or are we using a cannon to blow away a mouse? Are we treating the scan and not the patient?
I also have an appointment with my ND next week. We are waiting for other test results. Metformin may also be an option, though not through Kaiser. There's also the part of me that thinks less is more, and wonders if it is possible to keep this contained, since it appears my cancer likes to just take up residence in lymph nodes. It doesn't even seem to want to enlarge the living space lol.
In the meantime, I'm out of town for the majority of the next week and a half, Lake Tahoe for dance and then a long weekend at the coast with girlfriends. My oncologist wants to talk again when I get back, and come to some sort of a decision on how to proceed.
I just want to serve an eviction notice on those lymph nodes...
Sorry for the stream of consciousness spewing... just trying to get my thoughts out, and who better to understand than all of you?
Comments
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So very sorry
I was also told by my radiologist that chemo was the way to go after a PET scan show my first recurrenc.. chemo is systemic and works everywhere. Radiation only targets one small area. My oncologists recomened we return to the Taxol/carbo since it had been over 6 months since I had finished first line treatment. It did work for quite awhile, until I developed a reaction to the carbo. We did go back and try it again in a desensitized plan. The carbo was given over a 7 1/2 hour period. I was able to do that for 7 more treatments. I also felt that at least I knew what to expect with the Taxol/Carbo. And for some reason that was reassuring.
You are strong and what ever you decide you will get through this too. Sad that you have to even worry about it though.
Hugs and prayers, Lou Ann
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I am hoping so. I think LouConnieSW said:What can I say
This is really crappy. I can't imagine how you go about making the decisions you are faced with. Will talking with your ND help to focus things?
I am hoping so. I think Lou Ann once said something about how talking with these doctors from their various disciplines about how to treat something is like the blind men describing an elephant. It's all about parts and pieces and symptoms. I'm beginning to think that it's more important to eliminate the cause of cancer than to just eliminate the symptoms.
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Oh dear
this just sucks- I can see the wheels turning and I think I would be thinking all the same things. It's so hard that they want us to make decisions and we aren't the all knowing! I hope talking with your ND will give you some help and direction- mine is AMAZING! I asked her about Metformin and she said Berberine works better??? Something to ask about.
I will be thinking of and praying for you. I hope you can enjoy your trips and that you will find peace in the midst of the storm
(((HUGS)))0 -
Lou Ann, because it's beenLou Ann M said:So very sorry
I was also told by my radiologist that chemo was the way to go after a PET scan show my first recurrenc.. chemo is systemic and works everywhere. Radiation only targets one small area. My oncologists recomened we return to the Taxol/carbo since it had been over 6 months since I had finished first line treatment. It did work for quite awhile, until I developed a reaction to the carbo. We did go back and try it again in a desensitized plan. The carbo was given over a 7 1/2 hour period. I was able to do that for 7 more treatments. I also felt that at least I knew what to expect with the Taxol/Carbo. And for some reason that was reassuring.
You are strong and what ever you decide you will get through this too. Sad that you have to even worry about it though.
Hugs and prayers, Lou Ann
Lou Ann, because it's been almost a year since I finished frontline, I kind of figured I'd be doing carbo/taxol again. I was quite surprised when she said she didn't think it was a good way to go.
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I am so sad to hear that you
I am so sad to hear that you need to make this desision. I understand your feeling of wishing you didnt have the scan when you did. My doctors dont want to do scans unless there is a problem. I dont know quite how i feel about that. I really didnt want a scan too soon but also didnt want my cancer to come back and have me not know. This is what im thinking. As hard as probably is to face all this, maybe getting it now will kill it away forever and never return. Thats a great attitude you have. I think that is what i would hope for if i chose chemo again. I dont know if you mentioned before but did they decide it was cancer that came back. Did they rule out that the spots werent something else. I think i would want to know it was cancer forsure before i would deside.
Hey best of luck with whatever you decide
Hugs Janae
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Arghhh!
I am so sorry to learn that this is a recurrence. A few days with girlfriends can be perfect in helping with reaching a decision if they will listen and not offer advice, but provide you a sounding board to bounce all of this off. In the meantime, we're here.
Suzanne
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Yikes, what awful news...
so sorry you are having to deal with yet another go-round with this terrible disease. I wish there was a magic wand to make it all go away! And just when you were feeling good again...it's just not fair. It's good that you have competent and varied resources for making your decision. In the meantime, try to put this out of your mind and enjoy every second in Lake Tahoe and with your girlfriends. Sending good thoughts and hugs your way. ~LL
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Janae, you know, that's ajanaes said:I am so sad to hear that you
I am so sad to hear that you need to make this desision. I understand your feeling of wishing you didnt have the scan when you did. My doctors dont want to do scans unless there is a problem. I dont know quite how i feel about that. I really didnt want a scan too soon but also didnt want my cancer to come back and have me not know. This is what im thinking. As hard as probably is to face all this, maybe getting it now will kill it away forever and never return. Thats a great attitude you have. I think that is what i would hope for if i chose chemo again. I dont know if you mentioned before but did they decide it was cancer that came back. Did they rule out that the spots werent something else. I think i would want to know it was cancer forsure before i would deside.
Hey best of luck with whatever you decide
Hugs Janae
Janae, you know, that's a good point. At my appointment with my gyn/onc, he said he wasn't sure that they would do the stereotactic radiation without a biopsy confirming that it was cancer, which indicated to me that he wasn't 100% sure it was. However, the radiologist acted like he was sure, and he then gave that impression to my medical oncologist. Not sure that she's read the scans. When I read the scan report, it says "recurrent neoplastic disease is suggested." I don't read enough of these to know if that's the usual language to describe a recurrence. Not in denial about the likelihood of it being a recurrence... but worth a question to my gyn/onc.
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Sorry you're having to go through this
My thoughts and prayers are with you as you navigate this.
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I agree with you Chris on the
I agree with you Chris on the fact of eliminating the cause of cancer and not just the symptoms. Metformin was one of the drugs I asked my onc about and she said for now lets do the carbo/taxol but she also didn't say an absolute no further down the road. Nellasing mentioned Berberine and I looked that up. It looks to be a supplement very much like perscription Metformin. Like Nellasing said, worth asking your dr about. Sounds like you have a great time planned out of town just to have lots of fun and relax!! Sending you prayers and many hugs! Maryanne
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What I'd do if I were you (i.e. My 2 cents)
I have the garden variety of endometrial cancer that has the risk factors of early onset menses, obesity, diabetes, PCOS, estrogen dominance, and late menopause. I don't know if that holds true for the more agressive subtype like you have Chris. Likely not, given how slender you are and unlikely to be even pre-diabetic. Does metformin do for UPSC what it does for endometrial adenocarcinoma or is UPSC driven by different causes? If you are looking at eliminating conditions that may have contributed to you having developed this cancer or contributing to its recurrance, that's a question I'd have. I haven't really learned much about these aggressive subtypes of uterine cancer because that's not what I have. In any case, there comes a point when talking to too many doctor's just makes a decision harder, because they each advise from there own area of interest. If I were in your shoes and had some confidence that this is most likely recurrance, I'd go for the systemic treatment over local without reservation. I think that last radiologist had very sound reasoning behind his advice. You can revisit the value of adding metformin or other supplements after you take care of what you already know is there and could be shedding to elsewhere. I really hate seeing you struggle with this knowing as I do now how you've been down this road before and how agonizing being faced with making such a decision is. It seems like it should be more cut and dry than it is and not carry all the fear of making the wrong choice(s). We're all willing to do what needs to be done, if only we could be certain what that is! To borrow from Eldri: ((Chris))
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Chris, I'm speechless...
Chris, I'm speechless... Trying to find the right words when there really isn't any is frustrating. I have all kinds of cuss words going through my head at the moment!
Enjoy your time with your friends and put this as far in the back of your head as you can. Then, come back renewed and tackle this darn beast with the amazing strength that you have. It might be worth a try to post a question on the side effects that others experienced with the Gemzar/Avastin. Your body handled chemo so well the first time around, I'm hopeful you will do as well this time too.
Love and Hugs,
Cindi
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BerberineNellasing said:Oh dear
this just sucks- I can see the wheels turning and I think I would be thinking all the same things. It's so hard that they want us to make decisions and we aren't the all knowing! I hope talking with your ND will give you some help and direction- mine is AMAZING! I asked her about Metformin and she said Berberine works better??? Something to ask about.
I will be thinking of and praying for you. I hope you can enjoy your trips and that you will find peace in the midst of the storm
(((HUGS)))I had not heard of this, but I will check it out and certainly mention it to my ND. Thanks for the info.
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My integrative care doc had
My integrative care doc had me take Berberine after chemo when we did a blood/urine/stool test which showed a potienally pathnogenic bateria in my intestinal tract. The only thing that was effective at ridding it was Berberine or two strong antibotics that he didn't want me to take because I also had zero gut flora at the time. I took the Berberine for about 2 1/2 months. It is a plant exstract and is used in place of Metformin to treat diabetes. I'm not sure if it worked in my case as I have not had the test redone as they were about 5K and my insurance didn't cover much of that... boo!
I agree with others that is positively sucks to have to consider chemo again! Hopefully some time away and prayer (reflection) will lead you to the right answer for you! You are in my prayers!!
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Ugh! I hate hearing this!
Ugh! I hate hearing this! However, is there any way to make sure that this is indeed recurrence? I'm sorry you have to go through this again when you finally thought it was over. I hope the best for you during this time as you discuss this with the various doctors involved.
Prayers,
Rebecca0 -
Devastating news, Chris.
Devastating news, Chris. Please know that I am praying for you and your medical team as you work together to figure out next steps. If it were me, I'd go in guns blazing with the new chemo mix. Those MMMT cells are just too damn aggressive to think that they stayed put in the lymph nodes and haven't travelled anywhere else. Wishing good luck to you in whatever course of action you decide to take. Kim
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I'm sorry you're having to
I'm sorry you're having to make these decisions, Chris, and you don't even know 100% for sure that the cancer is even back. As I've said often, there are so many different protocols for treatment of this crappy disease depending on what country you're in, what part of the US you live and even what cancer center you go to within the same city. How in the h*ll are we supposed to know what to do??
So far I haven't had to make any more decisions after I quit chemo but I'm starting to think there is no "right" answer. We are all so unique and women with Stage I, Grade 1 die and Stage IV, Grade three live - WHY??? A hundred years from now, I'm sure doctors and women will look back at what we went through and shudder. All my love, Chris!!
Love,
Eldri
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Chris,
Chris,
I didn't bring this up before but maybe you should consider taking a Circulating Tumor Cell Test (CTC). They
take a sample of your blood to determine how many cancer cells are floating around. Since you didn't
test your original tumor and new cancers usually have different mutations, this might be a good way
to get a good understanding of what mutations you might have and what is going on- Foundation One
just started doing this-you can read about their test at www.foundationone.com. My original tumor was
sent to them but the CTC test was just released by them.
A great source on natural supplements and many diseases is the website www.lef.org (Life Extension). It is where
I first learned about metformin. You can also read about CTC testing on this site. They also have a company that
does the testing. You can sign up to receive their monthly magazines- they are excellent in going into great detail
about all of the natural ways to treat many diseases. They talked about berberine a few months ago. Curcurmin
also does some of the same things that metformin does.Takingcotrol58
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