90 year old mother in law --FOLFOX

[weisssoccermom]

I'm totally shocked by something that you wrote...not shocked at you. You said that your MIL couldn't tolerate the leucovorin....does that mean she wasn't getting it? If so, that is a HUGE problem because without the leucovorin, the infused 5FU basically just runs through the body and its effectiveness is diminished significantly without the leucovorin. IF she isn't getting the luecovorin, I wouldn't let her do the FOLFOX either....what is the point? The infused 5FU does the majority of the job in the cocktail and without the leucovorin, it's just not cutting it. Again, IF it is the case that no leucovorin has been used, then get her on Xeloda which is basically 5FU that doesn't need the leucovorin.

I have to wonder what the heck the oncologist is thinking. Again, neuropathy isn't the only side effect of this drug. No matter how strong your 90 year old MIL is, I still would NEVER have my mother, MIL or any elderly friend be subjected to a platinum based drug.

[fordodo]

Yes that is why we were told. I was also surprised to be so willing to give Folfox if no Leukavorin. I WISH I could talk to the Dr directly but as the daughter in law I am merely relaying to my husband who likely thinks I am nutty for being so PASSIONATE about this. I think this information is quite mind boggling when you are the immediate relative of someone more so than someone in my shoes. I will push to see if Xeloda can be explored. I remember six months ago when she began 5FU wondering why Xeloda wasn't an option.
She does live alone with a 24/7 caregiver now so I am relieved she will have help and hope they are prepared. Ironically, one of my husband's siblings is a doctor and he has been less than helpful. If he is sitting in on these visits I keep wondering how on earth he isn't questioning all this as well.
I will be certain to recommend removing all rugs --excellent recommendation! In addition, waterproofing sheets, having Depends on hand etc
I am PRAYING that she will once again amaze us all by her tenacity.
I am almost fully certain that at this point there will be no turning back from the decision they have made as a family so all I can do is pray and make suggestions for her comfort and safety.

[weisssoccermom]

Simply put, I have to wonder how effective the infused 5FU actually was for your MIL since the leucovorin wasn't part of the equation. As for why Xeloda wasn't given earlier, there are some good reasons.
1. If the doctor honestly believes that the patient wouldn't take the pills, that is a valid reason for not Rxing the drug.
2. If the patient tells the doctor that he/she has a difficult time taking pills, that also is another valid reason the doctor may not want to Rx it.
3. If the patient doesn't want to be responsible for remembering to take the pills (twice a day) and rejects the option...well, that's obvious.

One thing I have learned over the almost 11 years since I was diagnosed is this....too often, doctors refuse to Rx Xeloda because of the money implications. Now, I'm not referring to the cost of Xeloda for the patient but rather the lack of monetary gain for the doctor/practice. Today, Xeloda has a generic formula so there's no negative monetary implications for the patient BUT....since the patient gets the pills from the pharmacy, the doctor/practice is excluded from making any money. Remember the doctor/practice can and does charge the insurance company for drugs like infused 5FU and they can (and do) mark up the cost. In other words, the doctor/practice makes money on the chemotherapy drugs that they administer. Now, I don't want you to think that I am some sort of a conspiracy theorist....my oncologist actually told me that, at conferences, this very topic was discussed. Over the years, others on this board have indicated that their oncs have said the same thing.
I realize that you are the DIL and, as such it is difficult to exert any influence over the situation. My suggestion would be to tell your MIL about her options and tell her all the pros/cons of the FOLFOX cocktail. Also, if she is the kind of person who will speak up and if something like Xeloda only is something she wants to pursue, then don't ask the onc about it, tell the onc that it is what she wants. Oncs are only going to do the standard of care....it sounds, based on the small amount of info you have provided, that this onc is doing just that.....following the recipe.

I'm still incredulous that this doctor is Rxing this cocktail for your 90 year old MIL.

[cbsmith]

I started FOLFOC when I was 36 years old and FOLFIRI at 37. I couldn't imagine taking either of those chemos at 90 years old.

You have to wonder if she is doing it for herself or because the family want some her to or if she is doing it for the family. It f it is because of the family they should all get together and talk about this as it will have a huge impact on her for potentially not much gain if leucovorin isn't being used.

[dianetavegia]

Have you asked the oncologist if he/she would recommend this protocol for his/her mother?? This is just me throwing this out, but I wouldn't put any 90 year old through that type of chemotherapy. I wouldn't have even put her through infused 5FU....and I'm surprised that the oncologist didn't recommend Xeloda for her. WHY put a 90 year old through the invasive procedure of getting a port when another viable option was available? I don't know, but to me, this oncologist isn't looking at your MIL as an individual who happens to be elderly but rather as just another patient....and he/she is just following the 'standard of care' protocol.

I'm guessing because of her age, your MIL is the type that just goes along with anything and everything a doctor says.....that's just the way people of that age were brought up. That's doesn't, however, mean it is correct. I only was on oxi for one infusion because I had such severe reactions to it. My onc didn't even want me to take it but I insisted. Many people have side effects from that drug that is more than just the long-term/permanent neuropathy. Personally, I would get another opinion from a different oncologist and ask him/her what he/she would do if this was his/her mother. I'd bet you'd get a different answer.

EXACTLY

[fordodo]

Well, if she were my own mother (god forbid) I would be yelling from the mountain tops. I have passed all the information along to my husband to pass to his family with a near demand for at the very least a PET scan or an explanation why he wouldn't think that would be essential. You're all amazing..truly.

[bitchslapped]

Are you sure of your mnl's staging? Have you seen a post surgical pathology report? To be dx St IV w/o distant organ involvement that they cannot confirm, it must be distant lymph nodes affected. Any nearby lymph nodes might have been removed during, I'm assuming, a colon resection since you state she had surgery. You stated that they are not clear if spots on liver or lung are cancer. An MRI can be done instead of PET...or sounds like the onc wants to watch CT scans for growth in liver/lung & if lesions grow, then most likely cancer. Something is just not adding up in my mind My understanding is, assuming she is USA resident is that Medicare will cover 3 Pet scans in a lifetime, don't know limits on MRI's. I know my mother had MRI's medicare covered.
A link to NCCN Guidelines to Standard of Care:
https://www.nccn.org/patients/guideline ... ndex.html#


FOLFOX = FOL– Folinic acid (leucovorin)
F – Fluorouracil (5-FU)
OX – Oxaliplatin (Eloxatin)

FOLFIRI =
FOL – folinic acid (leucovorin), a vitamin B derivative increases the cytotoxicity of 5-fluorouracil;
F – fluorouracil (5-FU), a pyrimidine analog and antimetabolite which incorporates into the DNA molecule and stops synthesis; and
IRI – irinotecan (Camptosar), a topoisomerase inhibitor, which prevents DNA from uncoiling and duplicating.

W/o leucovorin your mil is not getting FOLFOX OR FOLFIRI technically speaking. Onc w/b administering 5-FU & Oxi (for short).

We have a sticky thread for Terminology & Abbreviations you may find useful:
viewtopic.php?f=1&t=5366

I hope they implanted a port a cath in her left chest (most common)for IV delivery of chemo meds & don't intend on delivery through veins.

To answer your question regarding other elderly folks: Yes, if you read the links on my 1st post, you will see that we have had other members w/elderly parents.

I understand your position as dnl. Your mil is entitled to chemo if that is what she wants. I think the input you have received so far should help your family to ask good questions of her onc, good enough to get everyone to come to an understanding along w/your mil of preferences in treatment & testing options...thanks to you.

You said you are an avid researcher. Boy, have you landed @ the right place! You have found a site w/a wealth of information @ your fingertips.

Best Wishes
BS

[fordodo]

Hi

Well I believe MRI is not an option because she has a pacemaker. When my husband questioned the rest of his family about why they weren't pushing for a PET scan, the brother who is a doctor said," Because, a Pet scan is done to find out if it has spread. We already know that."

[fordodo]

And yes--she does have a port.
I am on pins and needles as we edge closer to Tuesday(day of first treatment)
All is still being discussed but that is the plan set for now.

[canadiandaughter]

So sorry you had to come here, but as mentioned, you are in the right place for information! My father was 79 when he was diagnosed with stage iv colon cancer. He had liver and lung involvement. As I have mentioned here before, the oncologist before meeting him had a plan to go mild with the chemo, but after seeing my dad and talking to him, he changed the course of treatment and fought hard. My dad lived 2.5 years after his diagnoses. I can honestly say that the first 1.5 years he had very good quality of life. It was just in the last year that the chemo started to get the best of him. He also had a port and said it was nothing to get one! The point I am trying to make is that every person is different. What hurts one person does not effect the next. The last doctor that treated my dad a week before he passed away, called him the man of steel, which he was. He was VERY strong for his age. You have to look at your MIL and see what you think she can handle. I know my mother would not be able to handle everything that my dad went through, she is far more frail. My dad never really suffered from neuropathy. His biggest complaint was being tired. He couldnt do the things he enjoyed this past year. The cancer did not kill him, he got a bladder infection that did a number on him and he just gave up as he was using a walker and needed help to get up and down and personal hygiene. His last blood work a week before he passed away showed that is liver functions were fine, and that is where his cancer would not respond to treatments. Just the fact that he was only taking extra strength tylenol until his last week tells us that the cancer was not the problem. He has very little pain. I hope that your MIL's doctors take a look at the bigger picture with her and decide if chemo really is the best route for her. Hopefully she will tolerate her first treatment ok and they will know how to go forward with her treatment. Someone mentioned whether she was doing this for herself or the family, sorry I can't remember which poster it was, but that is a very good question that maybe needs to be addressed with her. Best of luck to all of you!

[fordodo]

Thank you so much for your positive message. Truth is , I think she is doing it 75 percent for the family and 25 percent for herself. Her voice sounds different this week, she told me she has pain and it all breaks my heart. I wish Tuesday would just hurry up and get here already.

[fordodo]

So here I am once again..she completed 4 or 5 reduced treatments with some setbacks--most recently fluid in her lungs and some windedness and lack of appetite. The ONC said no more. Would it make sense to stay on the 5fu as she was tolerating it well or does the ONC know something he isn't telling us. I believe the Folfox halted the tumors but now she is in a weakened state I question if she can come out of. ONC said it could be 2 months, 6 months, 8 months. Deep down, I wonder if they know and just don't have the balls to be fully honest. Just feeling lost and knew I could safely put this here.

[bitchslapped]

Hello fordodo,

Looks like you have gotten some really good input previously. What comes to mind for me is "cause & effect". There comes a point in this world where we just don't have good choices, particularly w/the elderly. One course of action may lead to problems elsewhere = cause & effect. IMO, a pacemaker, fluid in the lungs, labored breathing w/b very taxing on your mnl's heart & that would be the most immediate issue @ hand to address.

No one has that crystal ball, not even doctors, to determine how long a person has left on this planet. He simply doesn't know, other than guessing. Her family through knowing her, her nuances, day to day activity level, mental state/alertness may have a better idea. Sometimes our older folks just want to be left the hell alone vs having dr. appts & procedures becoming the majority of their social life. Coming to terms in making the determination when "less is more" is a huge struggle for family members. I would encourage the family listen to her comments, read between the lines of what she is really saying...or not saying for that matter, read her face, body language. Is she voicing her opinion to family, asking the doc questions or asking family questions regarding next steps?

This is a very painful process w/our loved ones, of which I can identify as I have been through it more than once. Ensuring that our loved ones are deservedly as comfortable & pain free as possible through palliative care or hospice is important. Equally as important is interacting w/them, engaging them in conversation, listening...really listening to their stories, a country drive, out for an ice cream cone, simple things, etc., can put warmth in their heart, a smile on their face, feeling cherished. There are many opportunities that often times family members don't seize. As dnl, feeling helpless, these small things that are really big may be the most meaningful contribution of all.

Best Wishes
BS