(9 replies, posted in Good News / What's Working)

Wonderful news! Enjoy your time together and just fatten him up a little!! smile


(1 replies, posted in Members' Cafe)

I forgot to post this. I know he was invited on here, but just wanted people to know Dr. Fong has taken a position elsewhere. I think he's in CA now.
So IF I ever become operable, I guess I will be staying at fox Chase. Or finding another surgeon. sad


(9 replies, posted in Good News / What's Working)

Congrats on the good news!! Wonderful to hear!
And keep making us smile... It's great medicine.

Thanks for this, Gavin. I'm sure it's going to help lots of us.


(3 replies, posted in Introductions!)

I am sorry to have to welcome you to our family. But you will never find a more caring group of people.
First off... BREATHE!! I remember my first few months were hectic, and I didn't even start chemo. But I had a type of surgery, so I know how much goes on the first few months.
I don't know much, but can say each facility should be able to help you with questions. I know the trial I am on you have to go to Fox Chase. They pay for blood work, treatment /meds. But travel, accommodations and scans are the patients responsibility.
I have a friend on another trial for a different cancer. She is going thru MN. For the first 6 months she was responsible for travel, accommodations. But now she can go to a local doc for her blood work. And they send it to MN.
I know it's not much help, but i hope it helped a little.
My suggestion is to find a trial and call the facility. See how they can help. And use Hope Lodge if possible.
As far as his treatment... Blood levels are often decimated by chemo. Just remember, even though he is currently on a week or so break, the chemo he received is still working.
Good luck with the treatment and upcoming scans.

It's a tough recovery. But not impossible. She will def need lots of help after. No lifting, no cleaning, no driving... For 4 weeks for lifting. I think I was allowed to drive after 2 weeks. It all becomes hazy after 3 years.
While the risks of most of these surgeries isn't overly high, I would make sure I knew what needs to be known. Where stuff is, will, power of attorney, etc. my parents knew I am a DNR. Give me drugs but do NOT put me on machines!! I'm single and have no kids, so that part is a no-brainer. And they know my wishes for cremation and what to do with ashes. I know it's morbid, but it will be out if the way.

I totally agree. That's why I'm doing all that testing! More knowledge for me and the researchers. I will make all my path reports available to whoever asks.


(6 replies, posted in Introductions!)

Congratulations on the baby!
Please try to relax, although I know how hard that is. Stress is not good! If the doctors are watching it closely, please believe in their knowledge. It's the best he can do for now. Don't believe it is bad, believe it is good! Our brains are powerful.
Best wishes for tomorrow.

I agree. But I think obesity makes us more apt to get any cancers.

Thanks, Gavin.

Thanks, Marion.

Thanks, Marion. Hopefully this develops and continues to advance.


(6 replies, posted in Introductions!)

I'm sorry I can't help with this question, as I am inoperable. But I wanted to welcome you to our little family. And I wanted to say how great it is he was operable! Hopefully this is just from treatment. I'm sure someone will chime in with their experiences.
Good luck.


(14 replies, posted in Chemotherapy)

The cold sensitivity SHOULD get better in the next day or two. But don't rush cold drinks!
I think the normal regimen is every 14 days. The gem/Ox can do a number on blood counts and tired, flu like symptoms are fairly normal. You should be checking your temp daily in case of fever.
My onc said that 14 days is the norm so the blood counts hopefully return to normal. And the tingling stops.
Just pay attention to the tingling and your body. If it feels ok, try to get through this. If it feels wrong, pay attention.
Did you get a card with side effects on it? If not, you should be able to find them online, although we have covered the majority.
Here's what I remember...

Flu like symptoms
Low grade fever
Neuropathy (including tingling)
Sensitivity to cold
Low blood counts

Less common
Hair loss

Very rare
Vision changes

I'm sure there's more but I can't remember. This stuff I either watched for or experienced. Or was told would happen.

They told me to only eat cooked veggies and fruit that had an outer shell. For example, bananas were great. Oranges... I washed them and cut with a knife. I washed the knife. I made the second cut. Etc. same with cantaloupe and others. Germs are on the outside.
My blood work never quite got back to normal so I had to be careful. It's a good idea when on chemo, or any time really, anyway.

I hope you start to feel better in the next day or so.

When I had my surgery (not resection) my parents came up to be with me. They are 77 & 82, so it was hard on them. But they couldn't not be here.
And I would plan on 5-7 days in the hospital.
I, too, bought an iPad, but mine is an iPad 2. It's been great for lugging back and forth to doctors all the time. I had a laptop in the hospital, and wish I hadn't had that extra 2 lbs in my bags when I was discharged!
If I was you, I would be going to the hospital, too. I would be a wreck if I wasn't there.
Good luck to your mom. I hope she gets the cleanest of margins and an easy recovery.


(30 replies, posted in General Discussion)

You could say
Mary, Mary,  not contrary. Go out and plant some flowers
A healthy you, and vases too
So you can enjoy them for hours!!


(11 replies, posted in Members' Cafe)

I will let you know. They had to request old pathology from Sloane Kettering so it might be a while. I see my onc I. 1-1/2 weeks and I'm planning on asking.
She said they use a cheaper co. That will work with me since I'm on disability.


(3 replies, posted in Chemotherapy)

It's something that builds up. It does go away between treatments. BUT it builds up. When it doesn't go away between treatments, they will stop the oxaliplatin. That may be 5 treatments, or 10. Or never. The best thing to do is keep warm socks and gloves around. And a scarf if necessary.
Room temp drinks are best. Or warm drinks.
There are some docs that will prescribe the drug for diabetic neuropathy. I never took it, and can't remember the name of it.
PLEASE don't put the cart before the horse, tho. Discuss your concerns with his onc. But maybe he will be one of the lucky ones that doesn't get it. Or at least doesn't get it badly.
I hope this helps.


(30 replies, posted in General Discussion)

Mary, I second Karen! I'm 1.5 hrs from you. If you find yourself cooped up in the hospital again, please let me know! I will try to visit. Especially if the weather is nice and I can ride there!

I'm not sure what they are talking about doing... Seeding perhaps? I can't help with the treatment questions, but have to say docs can't tell you when you are going to die. If they were right, I would be dead over a year now. And I'm still kicking!!
Your mom has a big decision to make. I hope someone was with her and took notes, and any questions can be directed to the office before a decision is made. Any onc and surgeon worth their weight will be happy to answer questions so a good decision can be made.

Adam, I am so sorry to hear of your fathers passing. May he rest in peace and may you find strength and comfort in this difficult time.


(14 replies, posted in Chemotherapy)

I also had the cold sensitivity and neuropathy on my second treatment, if I remember correctly. Plus I battled nausea 6 hours after infusion.
I received treatment during the summer but still wore gloves and heavy socks.
The cold sensitivity was first noticed the day after my 2nd treatment, but I didn't go to the fridge the first day, and since it was July it wasn't cold out at all. But boy did I think my hands were being burned! I learned to drink room temp everything! It usually went away after a few days.
The neuropathy built up with each treatment. It disappeared after a few days the first time, then a week, until after 6 rounds I still had it. The gem/Ox was then discontinued for fear of making it permanent.
Remember to keep gloves and warm socks nearby. A light jacket and even a scarf might come in handy. Walking through the refrigerated section of the grocery is tough! I had to wear gloves there in July-Sept. But it beat dropping cold food.
As far as how long it lasts.... The "bad" neuropathy probably disappeared within 6 months. But from the balls of my feet to my toes still buzzed constantly for almost 2 years. I still don't have complete feeling in my toes, and my fingers go numb and white when cold, but everything considered, it isn't too bad. I was able to wear sandals last summer, although I called flip flops "flip drags" because my left foot didn't feel enough to "grip" the sandals.
Matt, I'm sorry Lisa still has it, and badly. In retrospect, I am not sure what I would have done. If I had had ONE more infusion, I MIGHT have gotten my resection, but the neuropathy would have been worse. So I often wish I had lied and gotten one more treatment. Then I might have had surgery. I know, "should woulda coulda!"

Loads of prayers heading your way that Y-90 works. They are coming out with more and more new treatments lately. Maybe one will be good for you.
On another note... I never say "my cancer". It has invaded my body but is not welcomed and I refuse to claim it!


(4 replies, posted in General Discussion)

Ugh! That is just rude! It may be that there were extenuating circumstances, but it would have been nice to receive a call. Myself... I would make noise. Call tomorrow and see what happened. If there is still no visit tomorrow, ask if they can recommend an onc that cares about his patients.
I started to get very abrupt with Dr. K when I had had enough. I told her I wanted answers. I was no longer waiting for her to decide to tell me! Then I fired her to her face after I met Dr. Denlinger. Told her she needs to pay more attention to some of her patients.
I hope your dad is feeling better. There are other options out there. Hopefully one works better.


(11 replies, posted in Members' Cafe)

I'm so glad it was a good day! Such memories are to be treasured.