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Radiation Off the Table For Now

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

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?

 

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

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

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

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.  

ConnieSW
Posts: 1553
Joined: Jun 2012

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?

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

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.

Nellasing
Posts: 529
Joined: Oct 2016

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 <3  (((HUGS)))

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I had not heard of this, but I will check it out and certainly mention it to my ND.  Thanks for the info.

janaes
Posts: 800
Joined: May 2016

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

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

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.

Double Whammy's picture
Double Whammy
Posts: 2831
Joined: Jun 2010

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

LindyLu
Posts: 72
Joined: Sep 2016

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

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

My thoughts and prayers are with you as you navigate this. 

Mmpeterson
Posts: 124
Joined: Sep 2016

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

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

I'm so sorry about all of this! It's a tough decision to make. Prayers for you!

MAbound
Posts: 1124
Joined: Jun 2016

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))

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1774
Joined: Jun 2015

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

cindy0519
Posts: 173
Joined: Nov 2015

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!!

rcdeman
Posts: 263
Joined: Aug 2016

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,
Rebecca

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

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

EZLiving66's picture
EZLiving66
Posts: 1475
Joined: Oct 2015

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

takingcontrol58
Posts: 263
Joined: Jan 2016

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

 

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I had been thinking about something like this since last year, and wondering why more of this kind of testing isn't done as a matter of course.  It's pretty pricey, but...   I will certainly look into it.

I am familiar with Life Extension, though I haven't explored their site extensively.  In fact, a friend just ordered a nutrient panel for me through their site.  As far as curcumin,  yes, indeed, I am on that currently.

Thanks once again for all of your information.

Now I'm off for some R&R for a few days, dancing my *** off!

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

Chris, I just saw this thread. I'm sorry you have to face this and decide how to proceed. I hope your trips help clear your mind and give you strength to face the next steps.

I'm still in frontline treatment and for some reason it makes me nervous when my doctor even mentions the possibility of having to switch chemo meds, so I can certainly understand your reaction to that suggestion. At the same time, I can see the logic of throwing something new at the cancer.

I'll be thinking of you!

Rebecca

 

henhill's picture
henhill
Posts: 123
Joined: Aug 2016

I am sorry to have say I am joining you on the same path.  I just saw my surgeon Thursday and she is recommending Chemo with the  carbo/taxol after waiting several months without treatment to see what was going on.  I started out feeling great, but have had increasing pain and nausea to the point where I guess I would have to say I welcome it.  I am devastated more about losing my hair again than anything else, but she tells me that this regimen has the best chance of working, and usually determines whether any of the other, down the line drugs, will work later on.  My lymphatic mass has increased and the CA 125 has shot up to 560, so she thinks we should start right away.  BTW- I was also told that radiation was not a good idea, we should work on the systemic fight.  I keep you in my thoughts during the journey.

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

So very sorry to hear this news, henill. Praying that it works for you this time and that you never have to undergo treatments again. Wishing you strength and comfort, Kim

BC Brady's picture
BC Brady
Posts: 70
Joined: May 2015

Good God - why is this so hard to kick? I know what you mean by welcoming the treatment - anything to get rid of the discomfort - even replacing one discomfort with another. The hair thing IS devastating, I agree. And as much as I thought I could rock the scarf, I am too old and wrinkly to pull it off. I found a great place for affordable wigs tho - QVC! I buy the "Hairdo" name brand and love how light and comfortable they are. They let you send them back if not satisfied - and I've sent back plenty. Found a style that works for me and I even did a little trim on one to change it up a little. You are going to hammer those nodes - again - and your next scan will be better. So Hang on - get a new cute wig and some dangly earrings, eat ice cream or whatever makes you happy - xoxox, Billie

Nellasing
Posts: 529
Joined: Oct 2016

What rotten news- this stuff is like crazy glue- it just sticks around!  URGH! 

It is so awful losing our hair!  I hope you find something you enjoy wearing. 

Adding my voice to the chorus of prayers for you <3 <3  (((HUGS)))

MAbound
Posts: 1124
Joined: Jun 2016

Henhill, I'm so sorry to hear this. It's bad enough getting the "C" word applied to us the first time, but I'm thinking the "R" word is just as devastating. It just sucks!!! I am so mad for you, Chris, and Billie right now. Prayers for peace, courage, and success for all of you!

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

i don't know which is harder to hear. That you have cancer or that you have a recurrence.  Both are heart breaking.  But what I do know is that there is always hope.  Many, many prayers headed your way.  Glad we all have each other to lean on.

Hugs and prayers, Lou Ann

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1774
Joined: Jun 2015

Oh Henhill

I'm so sorry to hear this! You and Chris are both strong and will get through the treatments to fight this darn beast.

I hate cancer!

Please take care and come back often to let us know how you are doing.

Love and Hugs,

Cindi

BC Brady's picture
BC Brady
Posts: 70
Joined: May 2015

I haven't been on in a few days - and now to read your crappy news just makes me MAD! My reoccurrence is also in the lymph. What your doc said about having affected nodes that aren't lighting up is exactly what happened to me - but I only had 8 weeks before it came roaring back in several nodal areas - everywhere, even in my cervical spine. So take this as good news for you - fewer lighting up after a year - so maybe it's slower growing? Why in the world do they leave these decisions up to us?!?!

Radiation has never been offered as an option for me, only chemo. For what it's worth, your onc may be hesitant about restarting carbo/taxol for the possible reaction. I did fine on front line carbo/taxol, then lasted only 3 rounds on the reoccurence before I became allergic. Come to find out, it's a "thing" that happens - you can become platinum resistant. Maybe she's saving those big guns for later? Doxil and gemzar were the easiest of all the chemos I've been on. Some weird stuff - a couple of mouth sores with the doxil and some skin irritation taken care of by Sarna cream. I had a preponderance of affected nodes in my left axillary - which as "luck" would have it, were removed when I had the lumpectomy 3 weeks ago. All pathology came back uterine metastisis - not a new primary breast cancer, and my conclusion is that I got a free operation due to a faulty biopsy that was suspicious. (normal protocol - would have not done a lumpectomy and treated with chemo only) Basically you are where I was a year ago. Now I'm on a targeted chemo called Lynparza that is suppposed to be targeting the brCA2 mutation and some others. I can't recall if you said they did any mutation study on your original tumor, but the brCA mutation didn't even show up in my original tumor - it showed up in my pre-trial testing of the axillary node genetics.

The NCI-Match trial includes nodal disease - maybe that is something that would be available to you? It's national and has 24 'arms' to the trial. 22 arms are targeted chemo - works directly on your mutation, and 2 arms are immunotherapies. They do the pre-trial stuff to determine what arm you'll be in - if any. If you don't come up with any of the mutations they are fighting, then you don't get to be in the trial. For traditional chemo - it was described to me as a "cookbook". First you do this, then this, then this and so on. Next for me is topotican if I dont have good results with this Lynparza or get rejected from the NCI MATCH trial. It seems there's always the next recipe - so don't lose hope and Carpe Diem - it sounds like you are! Hope you have a good vacation and dance up a storm!

Love, Billie 

PS: just re-read your post - I did give the metformin a try for 4 months without any success that we could see. Also was on Avastin for 3 rounds, no adverse reactions for me. It's supposed to help with bloating. My insurance initially rejected the claim as it's 15k a treatment and is primarily an ovarian cancer drug. But for us with serous adenocarcinoma, it's also used. They eventually approved it upon resubmission.

Nellasing
Posts: 529
Joined: Oct 2016

You are such a dear heart- thank you SO MUCH for continuing to share with us all your journey!!  Continued prayers for you <3 <3  (((HUGS)))

henhill's picture
henhill
Posts: 123
Joined: Aug 2016

Thank you ladies

Thanks to all who have offered advice and condolences.  I am so glad to have found this group where everyone knows your pain along the via dolorosa.  I am also grateful for all the tidbits of advice and experience that offers whatever lift there is.  The doctors have no time for it and I live in a rural area where there are no UPSC patients out this way to commiserate with and learn from.  Please know that as I learn who the different folks are, I keep your struggles in my heart as well.

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