Help! Just starting on Dad's recent IIIC diagnosis

[Daddy's girl]

Well, here we are with the countdown "T minus one week" to go before Dad starts FOLFOX cocktail. Today Mom & Dad went to, what we were initially told in our first meeting, a "class" at the onc office. Mom said it was going to be all about details on how they were going to pay (later I discover this was told to her by friends, not doctor). Not wanting to be too intrusive about financial goings-on, I decided not to attend this "class". I figured it would include a tour of the cocktail lounge, with details provided on general comfort during the visits with several patients at the same time. Turns out, that wasn't the case at all, but a one on one meeting with the Onc PA with all the gory details about the cocktail, and side effects of them all! My folks were scared to death and I wasn't there. I've beat myself up all day about this...I should have gone with my gut and attended this so-called "class"...this was my first mistake, and it will be my last. DH called them this afternoon and told them both that I will be taking them to all appointments from here on, and that's just the way it will be....they readily agreed with the idea.

So, along with the administered FOLFOX, he has a pill 2x a day called Leucovorin. Evidently this drug helps with the absorption/binding of the 5-FU for an increased anti-cancer effect...but it increases the severity of the side effects of the FU...oh my. Any advice on this? I now have pages and pages of reading material about the terrible side effects which may or may not happen. What to do? I'm armed with information,but is it just best to wait and see how he tolerates this? I need to help my Mom get thru this too. She is usually very strong, but today, she had a rare meltdown. Guess this small novel I've written here is my way of having a meltdown too. I'm sorry for all this, but I feel better for sharing. I really don't know what to do now. His port goes in Friday, and I will be in the waiting room with my mom...we can support each other. Please God, help us thru this.

[wwroam]

That's a pretty heavy duty chemo , particularly for a 77 year old.
No-one else has mentioned this but if Oxi is scheduled, perhaps it could be 8 cycles with Oxi and 4 without. This is common practice these days.
Side effects from chemo can vary significantly with chemo. I worked all the way through 12 cycles and only missed 3 days from work.
My SO starts her 4th cycle of Folfox + Avastin on Monday. To date she has had no nausea, no cold sensitivity to the feet and slight cold sensitivity to the hands.
Her appetite is good and she drove herself to cycle 3 chemo. We are both mid 60s.
Don't go looking for problems.

[Annemiek]

Hi,
i'm on my 5th folfox session this week. i'm sorry your family is in the same situation. It is so scary and uncertain.
Just know that there your dad won't have all the side effects they mention, most likely there will be some, but they might be mild, especially in the beginning.
I don't have nausea because of the extra pills, i don't have appetite. i had the weird cold side effects, but they haven't got worse over time.
Just watch your dad closely, ask what he needs, encourage him to drink loads of fluids an rest when he feels tired.
Other than that people have been very thorough above so have little to add.
Oh, make sure you and your mum take good care of yourselves. In order to be good for your dad, you need to be good to you. Treat her to a nice outing, massage, lunch , whatever you fancy doing together. And have some me time for you as well, so you can be strong when you need ti be!
You will get through this!!!!

Annemiek

[horizon]

Turns out, that wasn't the case at all, but a one on one meeting with the Onc PA with all the gory details about the cocktail, and side effects of them all! My folks were scared to death and I wasn't there.

I remember that meeting VERY well. It really upset me when they handed me the list with all of the *potential* awful side effects. You have to realize they are warning you of every single thing that could happen. It doesn't necessarily mean that it will. If you read the disclaimer you get when you get something such as a whooping cough vaccine I've noticed that can be scary also. You don't know how he will react until he gets it underway. My side effects were unpleasant but nowhere near unbearable. Hopefully he will be the same way. As others have said he needs to drink a lot on infusion day.

[PainInTheAss]

Yes, I got some weird side effects one infusion that the chemo nurses had to look them up on the computer to see if they were side effects or if I was having a reaction. All the possible side effects in the world aren't likely to happen to just one person. And you can get different side effects with each infusion. The most important thing is to write down and report any and all side effects that do happen. My onc got rid of a lot of mine with just some Ativan, I think it was. Seemed pretty simple, but it worked and not just by making me not worry as much.... Actually reduced some side effects significantly.

[cathy123]

It is good to be prepared and know what side effects require a call to the dr., but besides that I would just wait and see how he does. Just make sure all side effects are reported to the onc at the next visit so they know if dose adjustments are needed.

As far as eating, I would follow his lead see what he wants to eat and not push it too much unless he has really rapid weight loss. I feel like crap for the first few days and would not be happy if someone was bugging me to eat every few hours. Staying hydrated is probably more important, but is hard since i can't drink anything cold. Ugh.

Hooe it goes well. Hang in there.

[Daddy's girl]

Well, this wasn't a good day at all. PET scan results back, and it appears a small spot on his lung was "lit up"... Chemo is now canceled until a biopsy is scheduled. Daddy is not happy. I think he'd psyched himself up to start the cocktail party, and now we take a step back. I feel so bad for him. Mom put him on the phone w me this afternoon (she says he's more receptive when it comes from me) so I could give him a pep talk about drinking lots and lots, and then a little more, of fluids. Reassured him on the side effects business that he may not get any of them, and it highly possible what he does get won't be anything he can't handle. Anyway, This spot on his lung is something he's had for years. He was told years ago from a scan that it was damage from pneumonia bout he had more than 15 years ago. But Onc wants it biopsied to be sure. One hospital told Onc biopsy could be done the 28th. She balked and said she'd call in a favor at hospital where she has privledges. I thought that to be forward thinking and assertive. But,Port still being installed on Friday morning. So here's my question: if it was "lit up" is that indicative that it's a center cell? I'm very tempted to call dr office tomorrow to get more info to help calm them both and ask the numerous "daughter of the patient" questions. What do y'all think of this setback? My apologies for the rambling.

[cathy123]

Sorry to hear that. The unknowns are all so hard. So, had this spot shown up on a scan a long time ago? Has it grown? I know that if it lit up on a pet that isn't good, but if it was cancer it should have grown I would think. My onc said pet scans can give false positives. So hoping for the best.

I certainly am not an expert, but I have seen concerns noted on here that biopsies can cause seeding and spread of cancer. They would be something to ask the surgeon about.

[exaussie]

Cancer is hurry up and wait all the time. It's hard to deal with that. Don't look into the future too much. The drs will figure out what's going on. You can get 2nd opinion also. Our dr wasn't in a hurry to biopsy any mets.
Leucovorin makes the chemo stay longer in the body , so yes the side effects linger.
Don't beat yourself up about not going to appt. It is good you can be there for them. I went to almost everyone of my son's appts because the patient will.not remember everything. Chemo brain is real. My son's memory improved for the time he couldn't have chemo so that side effect was less permanent.

[rp1954]

If he's not on chemo, like pre-op or waiting for biopsy, cimetidine and PSK (Corioulus extract) is high on our list of between chemo times and immune enchancement for biopsy/surgery. See previous posts about Life Extension Foundation recommendations and whiteswan's mom. Japanese clinicians added or partly replaced leucovorin with PSK and got far fewer side effects with better survivals.

[Daddy's girl]

Let me just start by saying, this cancer crap sucks the life out of me daily. As Tom Brokaw said about his own diagnosis, "when someone in the family gets cancer, the whole family has cancer." Ain't that the truth....jeez....

So, it's been awhile, and here's where we are today. We were all set to start chemo, and it seems the PET scan indicated that spot was cancerous and needed to be removed before chemo. I thought my Dad would die right there. I was so proud of how he'd psyched himself up to start chemo on May 19th, and it just didn't happen. However, the ONC was very assertive, (downright aggressive really) and off we went to a consult with pulmonary surgeon, PFT and pre-op in the same day, and the VATS surgery was yesterday. And well, not a good outcome. He found numerous other spots on the lung, and sectioned out a piece the size of his thumb with other nodules included in it, and sent it off to pathology. Surgeon talked to ONC before he told us the news, so now we wait again. While visiting Daddy last night, a SICU nurse told me and Mom that the anesthesiologist said the lung was "full of nodules"....Right now he went thru the surgery fine, could have come home today, but Dad elected to stay another night. I felt that to be odd, but he's worried about pain, so it's the perfect place for him right now. Mom can rest too.

So, what do you experts in colon talk think will be next? I suppose the chemo cocktail will be altered, but my understanding is we need to know which came first, the colon cancer or the lung cancer...And if the lung cancer caused the colon cancer, that's not good....but if the colon cancer metastasized to the lung, it's better. UGH. I hate this. Treatment path is dictated by that, right? Quite honestly, this doesn't sound good at all. Scary. What do I need to ask, do, tell? Dad's in such good spirits today while Mom and I fell to a million pieces yesterday. I think he still may be in the anesthesia fog, and really hasn't grasped the gravity of this new finding. But his strength helped me.

We meet with ONC again on the 16th, so I'll know more then, or maybe before when I call in a couple of days for info on the report. I've been a mess for 24 hours, but I'm getting my fightin' gloves on now! Any help you can give me for the fight is appreciated and thanks in advance!

[canadiandaughter]

I can't answer your questions but just wanted to show you some support from one daughter to another. I know the roller coaster you are on all to well. Believe me, everything seems so overwhelming until you have a plan. Then you get a kink in that plan and you start all over. It seems like it is one hurdle after another, but we get over them together! I had to be the strong one for my parents, which is really funny as I am NOT a strong person at all. You can do this!!!

[Maggie Nell]

deleted by user

[Daddy's girl]

Hi everyone...update on Daddy:

VATS complete and removed suspect spot along with several others. Funny, seems only one was "lit up" on the PET scan, but the pulmonary surgeon found 20-30 "spots" when he did surgery. Not good, we were told. Sent to pathology, and ONC called for meeting yesterday to inform us he has stage IV lung cancer...And the colon and lung cancers are different...totally unrelated, not met'd. So, the course of treatment is now focused on the lung(s). We are due to start chemo on Tuesday with Carboplatin & Alimta with Avastin thrown in for good measure. I was ready when she told us about Avastin, but not the others. Anyone know how these drugs work, are related, and side effects other than those listed on the printout from the ONC?

What a nightmare. I cannot wrap my mind around all that's happened in a mere 2 months. My Dad had a PET scan in Jan 2015 and nothing, and now we are Stage 3 CC and Stage 4 Lung cancer?! How could this be? How could this grow this fast? How did all the previous Dr's miss these/any signs?

We were on a course to hopeful recovery...now, I've adjusted my sails, and going in a different direction. Hopeful it's smooth sailing, understanding it's not curable, but manageable and keeps any potential for spreading at bay...I'm so sad, I can hardly think.

[PainInTheAss]

Oh hon, I'm so sorry for your bad news. Lots of small spots like that often don't show up on scans because they're too small, so that's why it got missed with the previous scans. That's just terrible that he has two primaries at the same time. My brother is an ER doc and had a patient that was diagnosed with three different primaries. I can't imagine.

I think the other chemos you mentioned are for lung cancer so it's different than what is given for colon cancer that has spread to the lungs. I hope his spots respond well to the chemo.