The Colon Club

I'm going with: There is still improvement right now!

I get my next CT scan tomorrow and won't know the results until Thursday. So I am going to think positively. I've done 10 sessions with chemo. Not sure what comes next yet. I am ready to keep fighting though!

Positive vibes coming your way with your scan tomorrow. Your attitude is awesome. Keep us updated. Praying for good news.

Only thinking positive for you scan tomorrow Robino! Def let me know when you get results next week. xo

Absolutely

Thank you!

CT scan is done. I got home and just for shits and giggles, I checked my medical portal and noticed that there was a new lab report posted. My CEA is still declining! Yay!! It was 90.7 and is now down to 70.7. Chemo is still working and I have a great feeling about the CT scan.

Crossing fingers, toes and eyes....makes typing VERY difficult... ROFL

Anyway. I will post when I get the results of the CT scan on Thursday.

Keep fighting the fight!

It's got to be cool seeing the mets shrink on imaging. Or at least read about the sizes going down.

NHMike wrote:It's got to be cool seeing the mets shrink on imaging. Or at least read about the sizes going down.

It's so cool just seeing the numbers go down
Any movement in kicking cancer's ass is an amazing feeling

I’m hoping the same. Robino you encourage me. All of you do! I know Mr Ziggy has high numbers and lots of mets but I’m hoping by early January when he gets his CT scan I’ll be able to celebrate too! I wish he responded as well as Robino to the FOLFOX, but hoping these drugs will melt his cancer back. I think that will be my New Years wish for him. You guys all rock with how you responded. It gives me hope! xoxo

Ok so the rash started...on his forehead. He looks like a teenager with acne. I told him he’ll have to start the antibiotic the doctor gave him for when this happens. He of course is pushing back on that. I don’t think Mr Ziggy is going to like it if it gets worse... other than the fatigue he is eating very well. Just nausea sometimes, and then it’s Zofran for that. I was surprised how over-night that rash seemed to pop up! We go in Tuesday to see doc, get labs and infusion. Have a good week everyone!

For the nausea, keep a chart of how long after infusion time and the nausea starts. If he can stay ahead of it, it is better.

Example: for myself, my nausea started in the late afternoon after pump disconnect. So I pop a pill about 2 pm on the day of disconnect. That's all that I need for the cycle.

Most side effects are pretty regular in how they manifest themselves. If you can figure out the timing, you can get ahead of them or start working to decrease them early on.

I'm sorry that Mr. Ziggy is experiencing these. Hopefully the drugs are making the cancer absolutely uncomfortable also. Enough to make it throw its imaginary hands in the air and say "I give up!" and go away

It is possible that he may not need to take the antibiotic for the whole rest of the time. I get thrush about 2-3 days after I am disconnected from the 5FU pump. I use the Magic Mouthwash for about 3-4 days when I feel the first signs of it at the edges of the roof of my mouth. It does have to run its course for a bit and I get the rough feeling all over the roof of my mouth. When I start feeling smoothness again, I stop using the Magic Mouthwash (has an antibiotic in there) and I am good until the next bout.

I'm like your husband in that I don't like having to take antibiotics or meds unless absolutely necessary. Sometimes they ARE needed.

Good luck on Tuesday!!!!!

Thanks Robino! Yes with new meds new symptoms I guess. Also bathroom hasn’t been good, not going. So off I go go for senekot. That’s a good tip about the nausea. He usually gets it if he bends over to pick something up or twists. Also the hiccups. We’ll get through it, though I appreciate insight from you because you are actually experiencing these things and I’m not. All my best! Mrs Ziggy

Interesting tidbit yesterday when we met with the oncologist and nurse. They both said separately that they like to see the patients on this protocol getting the rash. Apparently their responders get it! I was surprised and happy to hear that! So was hubs! This is his third week getting infusion and taking the meds. Keeping high hopes for his CT scan January 2nd. All my best, Mrs Ziggy

Good to hear that news, I'm sure!!

CT scan shows continued positive news!! We've decided to drop the oxi. Since we plan on me being around for a very long time, we don't want to take the chance that there are permanent damages. If it starts going the other way, we can always add it back in.

MRI shows a bulging disk that could be the cause of the jolts I'm feeling across the top of my feet when I bend my neck down. So looks like I'm going to be seeing a new specialist for that.

Bright side: less time in the chemo chair!

Robino1 wrote:Good to hear that news, I'm sure!!

CT scan shows continued positive news!! We've decided to drop the oxi. Since we plan on me being around for a very long time, we don't want to take the chance that there are permanent damages. If it starts going the other way, we can always add it back in.

MRI shows a bulging disk that could be the cause of the jolts I'm feeling across the top of my feet when I bend my neck down. So looks like I'm going to be seeing a new specialist for that.

Bright side: less time in the chemo chair!

Glad to hear you are getting good news from your CT scans.

That jolt in your feet when bending your neck is quite likely a side effect from the nerve damage of Oxiliplatin. I had it for about 3 months after my last Oxi treatment and then it when away. It's sometimes known as L Hermittes sign and you can find past posts about it as several people have experienced it after Oxi treatments.

Cheers
AT

MRI shows a bulging disk that could be the cause of the jolts I'm feeling across the top of my feet when I bend my neck down. So looks like I'm going to be seeing a new specialist for that.

I'd seriously consider talking to the supernutritional type of integrative MD(s) or ND. Both of us have had near crippling episodes or eras of back problems that were responsive to one or more nutritional recipes based on the old medical research and literature. Several of these happen to have 5FU augmenting, mutant inhibiting or immune building properties too. The NIH has supportive megavitamin C papers on KRAS and BRAF mutant inhibition too. Our own data show high dose cocktails as most successful.

Some of our experiences were high loading doses, then tapered off: 10,000 -50,000 iu of vitamin D3 + 45 mg MK4 (the particular human K2 vitamer), 12 - 20 grams/day of oral vitamin C QID or frequent IV vitamin C, 1-2 TSB fish oil or equivalent concentrate + gamma linolenic acid, 1-9 grams MSM, 2-6 g glucosamine, chondroitin. And less sugar and less weight. When we hit the most important component(s) levels, a lot of pain disappeared in 1-3 days, ultimate healing and taper down over weeks or months. My wife has had this stuff with 5FU for up to years.