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Re: Update after 2nd opinion discussion

Posted: Sat Sep 10, 2022 7:30 am
by DarknessEmbraced
That's wonderful news! :) I hope all goes well for you.

Re: Update after 2nd opinion discussion

Posted: Sun Sep 11, 2022 12:25 pm
by prayingforccr
Rikimaroo wrote:Everyone just wanted to give an update I got my first immunotherapy yesterday and all went well no issues whatsoever

Only issue I have right now is the fact that I’m bleeding through my bottom because of a tumor which most likely made a fistula will wait for the doctor to let me know we have to do a scan.
I have an MRI scheduled soon

Has anyone done a blood transfusion before I’m a little scared never done it before is it pretty easy did you use your port



I had a transfusion last october, Rikimaroo when my hemoglobin dropped to 8 :(

Wasn’t a big deal.

Was my first overnight stay in the hospital since I was born.

In and out.

Re: Update after 2nd opinion discussion

Posted: Sun Sep 11, 2022 1:10 pm
by Dennyp
Great news!

Re: Update after 2nd opinion discussion

Posted: Tue Sep 20, 2022 9:02 am
by Rikimaroo
Hello,

Everyone, where too start. So after my first immunotherapy session the next day (Saturday) I needed to get a blood transfusion because I was low. Then later that night I was bleeding from my bottom again alot and honestly it most likely was mixture of blood and mucus and drainage stuff....So I went to the ER spent Saturday to Monday there for them to monitor my blood levels. They also did a CT Scan and the tumor in pelvic is causing issues with bladder and fistulas. They didn't do much other then at least identify that I have fistula from tumor to anal region that's the two bumps I keep feeling, nothing can be done surgically right now.

Spoke with my new doctor at UM and he says immunotherapy takes are 4th treatment to see results and determine if it is making any improvements so will be trying my best to survive until then. It's been hard, I can't control my peeing anymore, it just comes out when it wants to. I have a little urinal I pee in if needed or when I am just tired and sleepy I just pee in my depends diaper which has worked, but it get's soaked at night and I have to get up and change it all dry up and back to the same routine.

I am at my wits end with the peeing myself, but glad its coming out either way. I Prefer to control and pee, but the pelvic tumor is a destructive force right now in my pelvic and affecting everything. I am so skinny, 121LBs, I am having a hard time gaining weight. Even though I am not eating exactly the way I use to, I still eat enough to gain some weigh. I don't know what to do here about gaining weight.

By the way I am always COLD. Anyone else have this problem? I am always always cold, my finger are freezing my hands shoulders, I am always covering. I feel like I am just wasting away guys. I just took a boost this morning, but I sent a message to my doctor about if there are any multivitamins I can take that won't interfere with treatment, I need to start gaining some weigh to get strength.

Well that is my update for now.

Riki

Re: Update after 2nd opinion discussion

Posted: Tue Sep 20, 2022 9:19 am
by Claudine
Oh Riki you are going through so much :cry:
I bet the cold is related to you being so skinny, you probably have zero fat left.
Have you started immunotherapy yet? How far apart are the treatments?
Sending lots of thoughts your way XXXXX

Re: Update after 2nd opinion discussion

Posted: Tue Sep 20, 2022 4:13 pm
by roadrunner
Riki: I wish you good fortune in getting to the 4th treatment to see where things stand and maybe start turning things around. I also wish you strength in these current difficult times.

Re: Update after 2nd opinion discussion

Posted: Wed Sep 21, 2022 9:56 am
by prayingforccr
Reading this brought me very close to tears, riki.

The only thing I can add would be to share how I gained a lot of my weight back from 135 lbs.

Each day I would have a banana cocoa peanut butter blended smoothie:

1 large banana, peeled, sliced, and frozen
3 Tablespoons unsweetened cocoa powder
6 oz Chobani 0% Greek yogurt (or 2%, flavored or unflavored)
3/4 cup whole milk
1 Tablespoon honey, maple syrup, or agave
1 Tablespoon peanut butter (any kind you like)
1 Cup of ice
1 scoop of vanilla protein powder

I would also eat a three egg ham and cheese omelette.

Hoping you pull out of this valley.

Re: Update after 2nd opinion discussion

Posted: Wed Sep 21, 2022 10:29 am
by Peregrine
Riki-

What is your BMI right now? You should not let it drop below 18.5, because that is the cutoff for the cachexia danger zone:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=46365&p=340274#p340274

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=58606&p=461434#p461434

Re: Update after 2nd opinion discussion

Posted: Wed Sep 21, 2022 3:25 pm
by beach sunrise
I admire you very much for being so open about your cancer, side effects and personal hell!
I think about you every day and am so happy you post updates.
Hopefully you will turn the corner soon and treatments works to lessen the struggles.

Re: Update after 2nd opinion discussion

Posted: Thu Sep 22, 2022 4:15 pm
by Atoq
I am so happy to read this! Really fantastic news!

All the best


Claudia