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HELP its grown. Please I'm sick I can't breath

Posted: Thu Feb 06, 2020 7:24 pm
by Trying
Please help. My dr just called and my liver tumor grew 2 mm. And my lymph nodes grew 2mm. Surgery bot option ad lymph nodes too distant
I'm currently on xeldo and avistan. Hes going to try me back on oxiplatin which I've been on a year ago for 12 rounds. Tried again 5 months ago and put me in hospital with such bad fever and nausea threw up 12vtimes on way home. Omg I can't handle this I'm shaking I'm scared. Please give me example of a small growth I had that shrunk with a med change please please. My poor baby keeps asking me up stop crying and I'm pretending I'm sad about a friend

Re: HELP its grown. Please I'm sick I can't breath

Posted: Thu Feb 06, 2020 7:30 pm
by AmyG
Shit. This was supposed to be an all clear update!

I know you have to be freaking the hell out right now. I have absolutley no experience with what you're having to deal with, and I have no idea if that qualities as a significant growth or something that's still under control that can be shrunk with meds.

What I do know is that if you need someone older than three to talk to about anything, I am more than happy to listen.

Re: HELP its grown. Please I'm sick I can't breath

Posted: Thu Feb 06, 2020 9:16 pm
by Siti
Sorry to hear this! I think there’s a possibility of trying a different chemo cocktail and it would work again. Your doctor would be monitoring you closely to know if the new chemo works. Try to take this in baby steps because it’s all to overwhelming.

Re: HELP its grown. Please I'm sick I can't breath

Posted: Thu Feb 06, 2020 11:00 pm
by Claudine
Trying, I know from your signature you’re a single mom, but do you have anyone (relative, friend) you could call to have come and be with you right now? You shouldn’t be alone with your child to handle something like this, if that’s at all possible!
Also, I don’t know but 2mm growth doesn’t sound a lot to me, I know it’s worse than shrinkage or stability but it doesn’t seem that things are completely out of control. Have you ever been on Folfiri? My husband is not responsive to Oxi (had a huge tumor develop while on it) but Folfiri worked really well for him, so if you haven’t had it yet it’s worth mentioning to your doc!

Re: HELP its grown. Please I'm sick I can't breath

Posted: Thu Feb 06, 2020 11:40 pm
by Trying
My mom is living with me right now thank goodness and I sent my boy to my dad's. I have done folfox. I previously had a great response to oxy so praying it works again

Nicole

Re: HELP its grown. Please I'm sick I can't breath

Posted: Fri Feb 07, 2020 1:56 am
by Rock_Robster
Hi Trying,

Sorry to hear the scan news - while 2mm is not a lot, obviously not what you were hoping for! May I ask how big the tumour was previously?

It sounds like if you had a good response to FOLFOX last time and didn’t have progression (or haven’t had it for a while), then there’s every chance you could again. Also as others have mentioned, some people also do very well on FOLFIRI. Many more things to consider still.

Deep breath, regroup, and back in we go (with literally hundreds of us with you). You got this.

Rob

Re: HELP its grown. Please I'm sick I can't breath

Posted: Fri Feb 07, 2020 2:23 am
by Punky44
I cursed out loud when I read the title of your thread—I am sorry you didn’t get the news you wanted today. I really hope the new cocktail is the answer and I also hope your mom was able to help provide some comfort tonight. You are one strong mama! You’ve got this.

Re: HELP its grown. Please I'm sick I can't breath

Posted: Fri Feb 07, 2020 3:04 am
by stu
Hi Trying ,

I see this as window of opportunity for you to step back and consider your whole treatment , that is after going to your kitchen cupboard and taking out a grain of rice . That is roughly 2 mm in diameter. Now I am no expert and I don’t know how it’s measured in volume but I do know 2 mm is a tiny amount of growth and I am also not sure where the margin or error is in collecting images , or the quality of the image . These are all valid things to ask your oncologist about . But it is tiny !

My mum had oxaliplatin for a second time . It’s a Brute but it did a marvellous job the next year and she only had six cycles to achieve this .

However I really do think it’s time to pop over to some of these big cancer hospitals in America just to see what ways they would treat you . Just for an opinion. Some may even do it from your scans . It would give you more of a starting point to open up a discussion with your oncologist. Why do they think you are inoperable? Is it a location thing ? My mum had 73% of her liver removed.

This is a blip , I would be much more alarmed if you were up in double figures . But it might just be a good time to re-evaluate your plan . See what your options are .Arm yourself with knowledge.

I do also think you can draw breath a bit , it’s requiring an evaluation but they are on it quickly

Take care ,

Stu

Re: HELP its grown. Please I'm sick I can't breath

Posted: Fri Feb 07, 2020 9:58 am
by Trying
Thank you everyone for your response. Im happy you are all in my team The tumor that grew was 6 cm and is now 2 I think. I'm in Canada at a major cancer center where all medical is covered. Might come to going somewhere else for other options.

Nicole

Re: HELP its grown. Please I'm sick I can't breath

Posted: Fri Feb 07, 2020 10:28 am
by stu
Glad you are feeling calmer . Am I reading this right ? It’s now down to 2cm ? Do you know the location of your lymph nodes ?
That’s great shrinkage overall and oxaliplatin is also effective for you .
Have they mentioned radio frequency ablation?
I really don’t see what you would have to lose by letting another set of eyes review . We always did this . Even if it’s to confirm you are doing the correct approach for you .

You have definitely got room to breath here and reevaluate. You current option works for you so that’s a positive going forward .
Take care ,
Stu

Re: HELP its grown. Please I'm sick I can't breath

Posted: Fri Feb 07, 2020 11:05 am
by Trying
Yes you read right. It was 6 cm to start. Oxy the first time also completely knocked out 8 tumors I think the distant lymph nodes are around my peritoneal met and liver as far as I know. The last time I talked about radio frequency they didn't want to do it because I also have peri mets maybe another dr would tell me differently

Nicole

Re: HELP its grown. Please I'm sick I can't breath

Posted: Fri Feb 07, 2020 11:27 am
by radnyc
I feel your pain, be strong. Are you been seen at a well regarded cancer hospital? If not try to find one. There are various treatments and therapies that your local clinic or oncologist does not have access to. Don’t give up hope.

Peace
Al

Re: HELP its grown. Please I'm sick I can't breath

Posted: Fri Feb 07, 2020 12:41 pm
by Detox
I agree with the others in that I don't think your doctors are being aggressive enough. They should be able to remove your liver tumor as it's just one lesion and it sounds small enough. They should also be able to remove lymph nodes during the liver surgery. I've heard many instances of this.

Definitely try to go to another hospital, maybe somewhere else in Canada or in the USA if you can.

Re: HELP its grown. Please I'm sick I can't breath

Posted: Fri Feb 07, 2020 2:47 pm
by Trying
I'm at a major cancer in Canada. He has sent me to surgeons and it had previously been a no. He had said before that if shrank on this scan we would send me to surgeon again. Now that it grew he said a surgeon wouldn't see me?? Hes in charge of the head cancer hospital and is highly regarded. Hes my second oncologist as he had such high recommendations but im starting wonder ....or push to see a surgeon again.

Re: HELP its grown. Please I'm sick I can't breath

Posted: Sat Feb 08, 2020 12:07 am
by JJH
Trying wrote:... He had said before that if shrank on this scan we would send me to surgeon again. Now that it grew he said a surgeon wouldn't see me??

If a surgeon won't see you, does that mean that your mets are currently considered inoperable? If so, do you know exactly why?

In your case, what are all of the things that they are looking at to determine "resectability"? Do you have a complete list of all the criteria at your particular cancer center? The criteria may be different at a different cancer center.

Reasons a Tumor May Be Unresectable
https://www.verywellhealth.com/unresectable-tumors-reasons-treatment-2249210

If they currently consider your mets to be unresectable and they plan to put you on another chemo regimen, do you know which of the BC Canada protocols they will be using, and have you read their Patient Handout on that particular protocol? There are several available protocols on their list:

http://www.bccancer.bc.ca/health-professionals/clinical-resources/chemotherapy-protocols/gastrointestinal