The Colon Club

ginabeewell wrote:Well I must be doing well because they want to start the pump chemo TODAY. We were just expecting saline. Glad I had sushi yesterday!

Sounds like they only found one affected lymph node, near the colon, which was removed during surgery. Pathology on all the other nodes was negative. I was a bit surprised by this, I assumed stage 4 went hand in hand with lymph nodes being more broadly impacted.

One more post op to go (with Dr Paty) and then will get the pump filled.

Thats good you had very minor affected lymph nodes. I have read studies that say its a positive prognostic indicator. I never had any blood thinners short of those heaprin shots. The pump chemo is easy cause you don’t get side effects from it. They started me on Folfiri this week and let me tell you that was another story. I feel like the FolFox was easier to tolerate for me anyway. I met with Dr. Polite today, very nice guy and they will be servicing my pump now in the off weeks. Goodluck!

cartech78 wrote:Thats good you had very minor affected lymph nodes. I have read studies that say its a positive prognostic indicator. I never had any blood thinners short of those heaprin shots. The pump chemo is easy cause you don’t get side effects from it. They started me on Folfiri this week and let me tell you that was another story. I feel like the FolFox was easier to tolerate for me anyway. I met with Dr. Polite today, very nice guy and they will be servicing my pump now in the off weeks. Goodluck!

I asked Dr Kemeny to consider keeping me on FOLFOX since my response to it has been so good so far. She wanted to spend some more time with my file before deciding which chemo to use. She has two weeks to decide, and likewise, we have two weeks to figure out who at Northwestern can service the pump. Otherwise we may be back on a plane to NY...or back to Dr Polite!

ginabeewell wrote:

cartech78 wrote:Thats good you had very minor affected lymph nodes. I have read studies that say its a positive prognostic indicator. I never had any blood thinners short of those heaprin shots. The pump chemo is easy cause you don’t get side effects from it. They started me on Folfiri this week and let me tell you that was another story. I feel like the FolFox was easier to tolerate for me anyway. I met with Dr. Polite today, very nice guy and they will be servicing my pump now in the off weeks. Goodluck!

I asked Dr Kemeny to consider keeping me on FOLFOX since my response to it has been so good so far. She wanted to spend some more time with my file before deciding which chemo to use. She has two weeks to decide, and likewise, we have two weeks to figure out who at Northwestern can service the pump. Otherwise we may be back on a plane to NY...or back to Dr Polite!

I asked her to stay on it as well cause it was pretty effective for me and ive only had 7 treatments of it. I mentioned that I had very minor neuropathy in my finger tips and that dream died right there So from what my wife and I understand, Dr Polite actually has the people from Medtronic oversee the pump maintenance which made me feel a lot more comfortable. Im going to stick with my local onc for the systemic although MSK did do my First Folfiri April 1st. They have this very unique 5fu pump that is disposable. They even teach you how to unhook yourself at home and give you a kit for it. The tradeoff is that you might be traveling and feeling sick. Cheers!

I’ve read the FOLFOX regiment is now 6, I see in your sig you’re around that, is that still the case? I thought FOLFOX was the worst of the bunch, I’ll never do it again, what’s your Onc say?

Pyro wrote:I’ve read the FOLFOX regiment is now 6, I see in your sig you’re around that, is that still the case? I thought FOLFOX was the worst of the bunch, I’ll never do it again, what’s your Onc say?

It is? My original onc had planned 12 total rounds for me and I got to 8 before my WBC was too low for #9.

I think Dr Kemeny’s instinct is to switch to FOLFIRI. I had such a tough time with diarrhea on FOLFOX that I’m a little worried about the switch. I really wish someone would take me off Vectibix, but so far it seems to be working so I stay on it, rash be damned!

The Vectibix rash is no joke. When I was on Vectibix, it was probably the low point in my journey. I felt terrible. But I sure am glad it worked and would do it again if need be.

Dave

ginabeewell wrote:I asked Dr Kemeny to consider keeping me on FOLFOX since my response to it has been so good so far. She wanted to spend some more time with my file before deciding which chemo to use.

ginabeewell wrote:I think Dr Kemeny’s instinct is to switch to FOLFIRI. I had such a tough time with diarrhea on FOLFOX that I’m a little worried about the switch. I really wish someone would take me off Vectibix, but so far it seems to be working so I stay on it, rash be damned!

You're right that Dr. K's instinct is to go with Folfiri. That's because all the studies/clinical trials were done with it, so she has the most data on its efficacy with the pump.

I did Folfiri initially after my pump was implanted, but three months later I had double-lung surgery and an ileostomy reversal. After it, I asked if I could go back to Xeloda (which I had been taking prior to my liver resection + pump) because it was easier for me to take the pills at work. She looked over my records, saw it had been very effective on my tumors, and let me switch to it. I'm sure part of her decision was based on the fact that no new tumors came up during the 3 months after the pump surgery.

So it's worth asking her about staying on Folfox if that's what you prefer. I think you could talk her into going off Vectibix, if not immediately, then in the near future. Once it looks like the FUDR in the pump is working to keep your liver clear and no additional extra-hepatic lesions show up, she'll feel more relaxed about your chemo.

I wanted aggressive treatment and was young enough and healthy enough to handle it, so I let her make all the decisions. I'm NED now so no regrets there!

You're doing great! Make sure you are eating plenty of protein so you heal faster. Just because your incision is closed, there is still a lot of internal healing that has to happen.

The puffiness you mention is irritating, but it will go away as the fluid leaves the area. It is weird though - I freaked out the first time I saw my abdomen in a mirror!!! A few weeks later, the pump clearly showed up as a small bump so I knew the extra fluid was gone. I wore compression running tights which made it a lot more comfortable to walk around in NYC. You can grab a pair at Uniqlo if you don't have some with you. Or wear tights under your pants. They both work.

Hope this helps!
Juliej

As far as vectibix goes. DH was able to dose reduce his vectibix he went as low as 60% he still had the nasty rash but for him is was more manageable. From May through November he did a full 12 rounds of FOLFOX before they took oxaliplatin completely away due to the neuropathy trouble. Our oncologust suggested a B vitamin supplement to maybe help or try to repair that nerve damage but we know its a long shot.

...anyway. DH just put himself back on 100% vectibix and the break outs are pretty much doubled. They call him a super trooper at the center because most people see 1 spot and go off till is gone and resume etc. The fight is real though he's going to try his best to stay on for 3 month, do another PET scan and see where he lands.

My point is maybe you don't have to take it completely out but ask about reducing the dose.

He is a super trooper! I cut my vectibux when my fingernails would bleed just picking things up, it’s terrible but effective stuff.

The reality is that I’m a mom, so I feel like I’m going to do whatever my oncologist tells me is my best shot! If that means more Vectibix, so be it. I know it’s mostly vanity at play - the splitting skin I could address with SuperGlue - so I have to be a big girl and deal with it.

I’ve told myself once I’m done I will treat myself to a full laser/whatever treatment with a dermatologist!

Until then I can deal with it. And the hair loss and the sore butt from diarrhea and anything else. So long as I have an outlet for complaining a little!

I try to be resilient and have a positive attitude but some days just get to me...

ginabeewell wrote:The reality is that I’m a mom, so I feel like I’m going to do whatever my oncologist tells me is my best shot! If that means more Vectibix, so be it. I know it’s mostly vanity at play - the splitting skin I could address with SuperGlue - so I have to be a big girl and deal with it.

I’ve told myself once I’m done I will treat myself to a full laser/whatever treatment with a dermatologist!

Until then I can deal with it. And the hair loss and the sore butt from diarrhea and anything else. So long as I have an outlet for complaining a little!

I try to be resilient and have a positive attitude but some days just get to me...

Irinotecan gave me the worst diarrhea of my life! But for the second cycle, the nurse gave me a shot of atropine and I didn't have diarrhea after that.

Hi Gina,
Your positive attitude is very inspiring. I have no doubt you will beat this, not only you have the MSK team behind you also because of your positive attitude and determination. Thank you for sharing your journey with us here. Sending healing vibe to you for a speedy recovery and successful chemo.

Hi ,
I keep meaning to pop on and say how much I love the way you describe your step children in your signature. How lucky are they to have a step mum like you .

Interestingly my mum despite having a significant spread to her liver , when she eventually had the Bowel tumour remover had no visible cells in her lymph nodes . She had reactionary nodes prior to chemo but had no PET scan at that point . I am not sure if it leads to a better prognosis. My desire to digest every oncology article subsided many years ago but she is doing well ten years later .
You are doing amazingly well in your recovery .
Best foot forward as my mother likes to say .
Take care,
Stu

stu wrote:Hi ,
I keep meaning to pop on and say how much I love the way you describe your step children in your signature. How lucky are they to have a step mum like you .

That’s super nice of you to say! But I really do feel lucky, we are a double blended family, and the early years were not so easy with our exes. But the four kids took to each other right away - the 13 year old is now posting pics of all of them on Instagram for siblings day.

And the 16 year old is downstairs setting up a Nespresso machine after I made a comment about being sad his dad wasn’t around to make me French press coffee tomorrow morning - which he traditionally makes and brings to me in bed on a tray. How lucky am I? Like father like son I guess.
: )

I've only just started hearing this on the radio but every time I hear it I blast my speakers.

Panic at the Disco - High Hopes

Makes me think of my husband and all of you!