Chemo Resistant - Help!

derMaus

I concluded six rounds of chemo three weeks ago and had a CT scan on Tuesday, prior to starting radiation. Today I got some devastating news: the chemo (carboplatin and taxol) didn't work. I had a radical hysterectomy in late November, followed by 6 rounds chemo, for Stage III Grade 3 undifferentited endometrial carcinoma. The CT scan prior to surgery showed only one mildly enlarged lymph node. 37 nodes were removed during surgery, and only one had scattered cancer cells. The post-chemo CT scan was supposed to be pro forma, although I wasn't foolish enough to take anything for granted. Instead of an 'all clear', I had several large lymph nodes adjacent to where the others were taken out. The path report says "new large confluent retroperitoneal lymphadenopathy above the level of prior dissection consistent with metastaic disease". The largest of these is 2.9 cm! My hands are sweating and I'm shaking so hard that it's difficult to write this. My oncologist has put the radiation on hold and ordered a biopsy for next week; his intention so to do testing before starting me on another chemo cocktail. When I asked why they weren't proceeding with radiation, he said "this is the tip of the iceberg. I'm worried about what else is out there that isn't showing". So, in 6 months, I've gone from a clear CT scan, through surgery and scorched-earth chemo, and come out the other side with enlarged lymph nodes beyond the original range of the cancer. It's clear my doc is worried; I'm semi-hysterical. I know that many of our group has struggled with different types of chemo, but has anyone actually grown NEW tumors while in treatment? Am I considered to have had a recurrence? I don't see how since this was there all along, but am pretty confused. Any insight or input is very appreciated. Thank you, my sisters. B

NoTimeForCancer

Dear derMaus.  I am so sorry

Dear derMaus.  I am so sorry to hear this.  That your oncologist is concerned tells me he cares and will be working with you.  I am sorry I can't provide you any insight, and I would only suggest you have more conversations with your oncologist, but here it is a Friday and you are left to your own thoughts - which is very hard.  Sending you prayers and hugs.  

janaes

Im so sorry to here this.  My

Im so sorry to here this.  My thoughts are with you.

Janae

ayostacey

derMaus,

derMaus,

Im so sorry about this news, I know it wasnt what you were hoping for.  My best advice, is dont let them delay more treatment. My sister got the initial carbo/taxol and had mixed results. Some grew bigger while getting treatment, some shrunk, some stayed the same. From one treatment, they put her on another and then another and another. It was after the the 4th failed treatment option, that she took a break from it while seeking out clinical trials. During that period she deteriorated fast. There were times during her treatment that she was waiting for Drs to make thier next move and it used to infuriate me seeing her have to wait. She put her "politeness" over her own health. Dont be polite. Be heard. Demand results, dont play the waiting game. That's my 2 cents for what its worth. Best of luck.

StrongerthanIthought

So sorry to hear this news

I can't imagine how nervous you must be.  Waiting for the biopsy & results will be hard but it sounds like your doctor is already working on a new plan.  Once he has the info from the biopsy, he can develop a new plan of attack. I was also Stage III - so I know what it is like to be "advanced"  even when just diagnosed. 

Hope & prayers,  Barb

Hma4

Feeling about the same

Sorry to hear, I have been in remission since March 2017 had the radical hysterectomy- carbo-taxol- external and  internal radiation finished treatment in Dec. 2016. Stage 3 grade 2 Adenocarcinoma . Went to see pcp for follow up- I've had some little red dots appearing on my arms and torso so he had me go do labs - he called me back into his office and said my ESR was at 72 and should be between 20-30 - so he's having me do an MEI on the 15th that's the soonest they can get me in. He wants to be sure "it's not something new" so my waiting begins. Rheumetoid Arthritis is one of the possibilities from what I have found on the web, even that doesn't make me feel any better. Hugs and prayers for you- don't lose hope.

CheeseQueen57

We're all with you

We're with you always. 

Soup52

I'm so sorry. Prayers for you

I'm so sorry. Prayers for you!

TeddyandBears_Mom

Darn it! So sorry to hear

Darn it! So sorry to hear this B. I'm sure this is going to be a long weekend for you. Sending you loads of support, love and hugs. Cindi

Kaleena

Dang!

Sending you hugs and prayers.  So sorry to hear this.  In one way I can see why they don't want to do radiation yet.   Once they radiate a certain area that is it.  They can't radiate there again.   So they probably want to get a closer picture before they do radiation.  Having surgery alone can cause the lymphadema.  As scary as it seems, at least your doctors are taking the necessary steps to see exactly what it is.

yes it would be considered a recurrence.   Also, if you are concerned in anyway, you can always get a second opinion.

My best to you!

Kathy

Nellasing

Sorry B

This is hard news to wait through- we are all here with you- totally understandable that you are shaking and upset!  You've got a Dr who is concerned and working on it so that should give you some comfort as you know you aren't alone on that front either.  Sending you BIG ole (((HUGS))) and prayers

bluehyacinth

Sorry to hear that. I am also

Sorry to hear that. I am also kind of chemo resistant. I went through radiation and concurrent chemo then 4 additional rounds of chemo and had mets shortly after. I was 3CII grade 3 UPSC now whatever endstage. I saI'd no thanks to trying other chemos and went straight for Keytruda that I have had very good results with. Thought I would mention it. There are other options. I know someone here talks a lot about Metformin (I am not insulin resistant nor fat and it did nothing for me other than add unwanted sideeffects, but we are all different). Good luck with whatever you try next.

 

 

ConnieSW

What can I say

I've been thinking about you ever since I read your post this morning. Please know I care. 

derMaus

bluehyacinth said:

Sorry to hear that. I am also

Sorry to hear that. I am also kind of chemo resistant. I went through radiation and concurrent chemo then 4 additional rounds of chemo and had mets shortly after. I was 3CII grade 3 UPSC now whatever endstage. I saI'd no thanks to trying other chemos and went straight for Keytruda that I have had very good results with. Thought I would mention it. There are other options. I know someone here talks a lot about Metformin (I am not insulin resistant nor fat and it did nothing for me other than add unwanted sideeffects, but we are all different). Good luck with whatever you try next.

 

 

Thank you all for your kind

Thank you all for your kind comments. Can you tell me what you mean by good results from Keytruda? Is it still working?  

KTMay

Similar Situation

I was diagnosed in June last year with USPC Stage III, with one lymph node in pelvis area noted. (I thought I was pretty lucky at the time.) The protocol my Doctor used was four treatments of carbo/taxol and then sent me to the radiologist where the CT scan the radiologist ordered showed metastasis to stomach cavity and omentum areas whereupon she recommended I go back to chemo for "systemic treatment" since she could not radiate all the nodes without risk to organ tissue areas. The Doctor did a second laproscopy to biopsy these new nodules he did not see five months earlier when he did the hysterectomy and original staging. The biopsy confirmed spread of USPC and was also sent to Caris for molecular intelligence which has provided some useful information on my particular mutations which the doctors use to help decide next treatment, although this is not a definitive guideline, just more data. For example, they say keytruda would not be a good match for me because I am not PDl-1 +. The recommendation was to try doxil + Avastin next but after 3 cycles the reaction on my feet was so severe that my doctor took me off it. I am currently in a clinical trial at MD Anderson which I decided upon--and my doctor agreed--since I am still relatively healthy and in some cases clinicals won't take you if you have had more than 2 different treatments; this seemed to be the right window to pursue a clinical knowing I can return to another more standard chemo treatment if this doesn't work. So from my experience getting another biopsy to confirm the spread and perhaps a molecular test your doctor has some confidence in is a reasonable next step. If it is USPC metastatis then systemic chemo treatment appears to be the standard recommendation. I have learned to think about this disease--thanks to help from this website--as a clever, aggressive disease where a one-time magic bullet or treatment regime is not the norm. The doctors are following what they have in protocols but frankly there is not much research and "typical" courses and treatment of this disease is not well established. I've learned to ask about the options ("the bag of tricks") and consult at least two doctors and make the best decision I can at the time, knowing that there will likely be multiple options ahead to try to keep this disease stable or hopefully regress. Hope this helps, but I was in a similar "freak-out situation" when the radiologist sent me back to the oncologist with the not so great CT scan showing resistance to carbo-taxol.  Seek out your options and feel comfortable with your decisions.  I used to get mad that I had to put so much effort into understanding the disease and treatments, ready to blame the doctor that this is his job, but they too are in a continuous learning environment.              

Kvdyson

derMaus, I am so sorry to

derMaus, I am so sorry to hear about your results. Hopefully the experiences that others have shared help give you back some sense of control and offer you at least a few talking points to discuss with your medical team. If you haven't gotten a second opinion on your treatment plan yet, now may be the time. Please keep us updated on how you are doing. Wishing you peace and comfort, Kim

beccabtown

Hoping for good news for you

Dear Maus, I just saw your post and am so sorry to hear you're going through this. I hope you get encouraging news soon about your biopsy and treatment plan. I know how hard it is to do, but try to put "what if" thoughts on hold until you have more information. All best, Rebecca

 

Nellasing

beccabtown said:

Hoping for good news for you

Dear Maus, I just saw your post and am so sorry to hear you're going through this. I hope you get encouraging news soon about your biopsy and treatment plan. I know how hard it is to do, but try to put "what if" thoughts on hold until you have more information. All best, Rebecca

 

Love your new pic!

Rebecca you are looking good   (((HUGS)))

derMaus

KTMay said:

Similar Situation

I was diagnosed in June last year with USPC Stage III, with one lymph node in pelvis area noted. (I thought I was pretty lucky at the time.) The protocol my Doctor used was four treatments of carbo/taxol and then sent me to the radiologist where the CT scan the radiologist ordered showed metastasis to stomach cavity and omentum areas whereupon she recommended I go back to chemo for "systemic treatment" since she could not radiate all the nodes without risk to organ tissue areas. The Doctor did a second laproscopy to biopsy these new nodules he did not see five months earlier when he did the hysterectomy and original staging. The biopsy confirmed spread of USPC and was also sent to Caris for molecular intelligence which has provided some useful information on my particular mutations which the doctors use to help decide next treatment, although this is not a definitive guideline, just more data. For example, they say keytruda would not be a good match for me because I am not PDl-1 +. The recommendation was to try doxil + Avastin next but after 3 cycles the reaction on my feet was so severe that my doctor took me off it. I am currently in a clinical trial at MD Anderson which I decided upon--and my doctor agreed--since I am still relatively healthy and in some cases clinicals won't take you if you have had more than 2 different treatments; this seemed to be the right window to pursue a clinical knowing I can return to another more standard chemo treatment if this doesn't work. So from my experience getting another biopsy to confirm the spread and perhaps a molecular test your doctor has some confidence in is a reasonable next step. If it is USPC metastatis then systemic chemo treatment appears to be the standard recommendation. I have learned to think about this disease--thanks to help from this website--as a clever, aggressive disease where a one-time magic bullet or treatment regime is not the norm. The doctors are following what they have in protocols but frankly there is not much research and "typical" courses and treatment of this disease is not well established. I've learned to ask about the options ("the bag of tricks") and consult at least two doctors and make the best decision I can at the time, knowing that there will likely be multiple options ahead to try to keep this disease stable or hopefully regress. Hope this helps, but I was in a similar "freak-out situation" when the radiologist sent me back to the oncologist with the not so great CT scan showing resistance to carbo-taxol.  Seek out your options and feel comfortable with your decisions.  I used to get mad that I had to put so much effort into understanding the disease and treatments, ready to blame the doctor that this is his job, but they too are in a continuous learning environment.              

This is hugely helpful. Thank

This is hugely helpful. Thank you.

LesaC

KTMay said:

Similar Situation

I was diagnosed in June last year with USPC Stage III, with one lymph node in pelvis area noted. (I thought I was pretty lucky at the time.) The protocol my Doctor used was four treatments of carbo/taxol and then sent me to the radiologist where the CT scan the radiologist ordered showed metastasis to stomach cavity and omentum areas whereupon she recommended I go back to chemo for "systemic treatment" since she could not radiate all the nodes without risk to organ tissue areas. The Doctor did a second laproscopy to biopsy these new nodules he did not see five months earlier when he did the hysterectomy and original staging. The biopsy confirmed spread of USPC and was also sent to Caris for molecular intelligence which has provided some useful information on my particular mutations which the doctors use to help decide next treatment, although this is not a definitive guideline, just more data. For example, they say keytruda would not be a good match for me because I am not PDl-1 +. The recommendation was to try doxil + Avastin next but after 3 cycles the reaction on my feet was so severe that my doctor took me off it. I am currently in a clinical trial at MD Anderson which I decided upon--and my doctor agreed--since I am still relatively healthy and in some cases clinicals won't take you if you have had more than 2 different treatments; this seemed to be the right window to pursue a clinical knowing I can return to another more standard chemo treatment if this doesn't work. So from my experience getting another biopsy to confirm the spread and perhaps a molecular test your doctor has some confidence in is a reasonable next step. If it is USPC metastatis then systemic chemo treatment appears to be the standard recommendation. I have learned to think about this disease--thanks to help from this website--as a clever, aggressive disease where a one-time magic bullet or treatment regime is not the norm. The doctors are following what they have in protocols but frankly there is not much research and "typical" courses and treatment of this disease is not well established. I've learned to ask about the options ("the bag of tricks") and consult at least two doctors and make the best decision I can at the time, knowing that there will likely be multiple options ahead to try to keep this disease stable or hopefully regress. Hope this helps, but I was in a similar "freak-out situation" when the radiologist sent me back to the oncologist with the not so great CT scan showing resistance to carbo-taxol.  Seek out your options and feel comfortable with your decisions.  I used to get mad that I had to put so much effort into understanding the disease and treatments, ready to blame the doctor that this is his job, but they too are in a continuous learning environment.              

I am in MD Anderson clinical trial too

KT May

I am in a clinical trial at MDA also the octopus trial they call it .. I am taking the Olaprid and Adz5363 pills and was wondering if you are in the same trial and how it is going for you.  I am in my 8th month of taking pills and just still trying to get my head wrapped around all of this.  I iwas originally diagnosed in 2010 incorrectly and correctly diagnosed in 2012 and treated with chemo off and on for several years.  Anyway just wondered what trial you were in and how it is going for you and your results.  Hope you are well and wish you many blessings.

Lesa