Rectal To Liver Cancer -- Please Help Me Help My Dad
tpmack37's post on the Rare Cancer Support Forum (which I read yesterday)...
http://www.rare-cancer.org/forum/viewtopic.php?t=3626
...brought me to Google his alias and it brought me to this place, specifically his thread @ http://csn.cancer.org/node/190358
So here I am.
My family is currently living in Southern California, and I'm the son of a father who has cancer, diagnosed less than a week ago. It's been rough, and surreal. I'm numb...emotional...possibly in some level of denial...just all over the place.
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My dad, 55, has had ulcerative colitis for the past 12 years. I believe he'd had a total of 7 colonoscopies up until missing his annual last year (I know...), and since his recent condition flare up that has been for almost 2 months (which was progressively getting worse), his gastroenterologist ordered some blood tests and scans. On the morning I drove him to get some blood taken, which he'd been fasting for, he was already feeling dizzy and lightheaded. He ended up passing out for a short time before the nurse could even get blood from him. His blood pressure was 97/57 before we left for the ER.
Being admitted to the hospital after that, he had an abdominal CT scan amongst other tests, and the doctors were concerned about various spots on his liver from those images. He had the biopsy and it didn't come back with pus in the specimens (3), so that apparently indicated it wasn't abscess/infection. Not good news, well, at least until later on the GI doctor said to us ironically that would have been more life-threatening than with what we're dealing with now. Likely tumors.
He had his 8th colonoscopy scheduled 2 or 3 days after the preliminary biopsy results, and that came back with colon cancer, a tumor, despite the fact that blood work suggested things were normal there. Things started to make sense at this point.
My dad had a successful colostomy just days ago to remove the colon cancer, which was actually discovered to be in the rectum, not higher up into the colon as it was thought to be from the colonoscopy.
At this point in time we're waiting for him to recover so he can undergo whatever treatment(s) necessary for the liver issues. In a nutshell. It sucks to have to wait, but it's understandable.
I want to do everything I possibly can to lengthen his life, as much as possible. I'm looking at specific liver cancer diet for when he can eat (post-op and all, being the kind of surgery it was--waiting for his new digestive system to come together), what could help, possible mushroom remedies included, and of course what aggressive treatments are actually going to be the best come the time...NOT just going by what our oncologist is saying. Not just "chemo."
His cancer pathology points to SQUAMOUS cell, by the way. I hear that is not the most common, it's a bit harder to treat, and a bit faster growing than the other, more typical kind of colorectal and liver cancer found.
Reading what I've read so far on this place, namely from fellow user "winnipeg" from Los Angeles...
http://csn.cancer.org/user/120603
...about a particular cocktail for the liver that has worked for her, I like to think I've found some hope in these dark times. Truly. Like, I want to run to San Diego and have my dad see this oncologist.
Read this post of hers if you have not already:
http://csn.cancer.org/node/190358#comment-817872
But I guess that's it for now. I just want to check in here, and ask for all the advice I can get. Please!
Please and thank you.
/Adam
Comments
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Hi Adam
Welcome to our extended family. Many here have or are working with alternatives and suplements so I am sure they can help you help your father.
I too had a rectal tumor which was squamous cell based. While information says it is rare, it seems to be diagnosed more and more.
If he runs into any questions or issues with the colostomy, be sure to post here as there are a number of us who have one.
Hoping your father has a speedy recovery from the surgery and that whatever treatment plans are determined work well for him.
Marie who loves kitties0 -
Adam,Lovekitties said:Hi Adam
Welcome to our extended family. Many here have or are working with alternatives and suplements so I am sure they can help you help your father.
I too had a rectal tumor which was squamous cell based. While information says it is rare, it seems to be diagnosed more and more.
If he runs into any questions or issues with the colostomy, be sure to post here as there are a number of us who have one.
Hoping your father has a speedy recovery from the surgery and that whatever treatment plans are determined work well for him.
Marie who loves kitties
We all look for some type of rainbow in this storm to hang onto...Here is yours...Slow growing cancers are actually harder to treat and especially to cure, faster growing are stated as faster reacting to treatment and get faster results more often. I know, its not much but in this journey as you have already noted about the waiting, that patience is the key here, there is no quick fix but the more you immerse yourself into knowledge the better options you find you have. Be careful though about what you read out on the internet...some is very very outdated. This is the best place for knowledge and answers.........I wish only the best for you and your family, you seem to be a great son, but please try not to take it all on yourself, it has a history of being real tough on the caregiver(like you) much worse than on the patient, allow yourself time to be OK as well...........buzz0 -
Hi Adam and Welcome,
Sorry
Hi Adam and Welcome,
Sorry you are having to post here, but so glad you found us.
First, I think the shock, or numbness is very common. Finding your mind wandering all over the place, rehashing this or reliving the what ifs and should haves, is very common. What helped me the greatest was to force myself in mid thought, to "not go there" that is was pointless and certainly not helpful in the long run. The battle is ahead of you now, not behind you.
Second I am curious if your Dad has 2 primary cancers, or if the liver mets have spread from the colon/rectal cancer? I believe that 2 primary cancers to be very rare like this and one does see spread of colorectal cancer to the liver.
The first thing will be to get your Dad recovered from the surgery- the oncologist he sees will have a game plan for him- and then you can start to move forward. And do not, do not lose hope. Your Dad is a young man and there is no way at this point that you shouldn't be thinking of anything other than happy, fun years ahead!0 -
Thanks, all of youPatteee said:Hi Adam and Welcome,
Sorry
Hi Adam and Welcome,
Sorry you are having to post here, but so glad you found us.
First, I think the shock, or numbness is very common. Finding your mind wandering all over the place, rehashing this or reliving the what ifs and should haves, is very common. What helped me the greatest was to force myself in mid thought, to "not go there" that is was pointless and certainly not helpful in the long run. The battle is ahead of you now, not behind you.
Second I am curious if your Dad has 2 primary cancers, or if the liver mets have spread from the colon/rectal cancer? I believe that 2 primary cancers to be very rare like this and one does see spread of colorectal cancer to the liver.
The first thing will be to get your Dad recovered from the surgery- the oncologist he sees will have a game plan for him- and then you can start to move forward. And do not, do not lose hope. Your Dad is a young man and there is no way at this point that you shouldn't be thinking of anything other than happy, fun years ahead!
I really appreciate the replies, you all. Thank you. It's just nice to know at the very least that people outside of hospital staff know what I'm speaking of and where I'm coming from... And to know that information can be sent to me along the way.
The liver mets have spread from the rectal cancer. That's how I understand it. Technically "colon cancer", though, said the oncologist?
Having never been experienced with an oncologist before (that goes for all of us in my family), naturally I don't get a good vibe from him (like as a person--mostly "all business" and lacking a clear sense of compassion), but his chemo drug plan *options* so far include:
Ovaliplatin (sp?) *or* CPT-11
5FU LV *or* Xeloda
Avastin
Erbitux *or* Parititmale (SP!?)
(Sorry, doctor's handwriting is hard to read clearly!)
What do you all think?
I'm comforted by seeing some familiar ones on there from having read other people's successful stories as a result of their treatment drug. Avastin seems like a must-try for everybody, I can't help but think.
In any case, just because--no doubt are we going to get at least one other oncologist's opinion on what would be best done as a first line of treatment.
We now have the to-date medical records since being hospitalized to take to other places.
My dad should be out of the hospital by tonight, first time out in almost 2 weeks. As long as he shows he has the energy, and will eat even if his appetite is suppressed for whatever reason(s). It's exciting, a new chapter, better than being in the hospital, yet ever reminding of what's to come...you know... And I can really feel my dad sensing that as well. It makes me quite sad. He'll look at our home differently upon his return. But Since chemo treatment awaits in a little bit under a month from now, I'm anxious to start feeding him the rightest, SAFEST of foods, even though it'll be a likely unpleasant challenge. (He's never been one who loved veggies, for one thing, certainly not raw.) It has to be done.
Til' next time, friends.
/Adam0 -
Big warning on the dietMagrao said:Thanks, all of you
I really appreciate the replies, you all. Thank you. It's just nice to know at the very least that people outside of hospital staff know what I'm speaking of and where I'm coming from... And to know that information can be sent to me along the way.
The liver mets have spread from the rectal cancer. That's how I understand it. Technically "colon cancer", though, said the oncologist?
Having never been experienced with an oncologist before (that goes for all of us in my family), naturally I don't get a good vibe from him (like as a person--mostly "all business" and lacking a clear sense of compassion), but his chemo drug plan *options* so far include:
Ovaliplatin (sp?) *or* CPT-11
5FU LV *or* Xeloda
Avastin
Erbitux *or* Parititmale (SP!?)
(Sorry, doctor's handwriting is hard to read clearly!)
What do you all think?
I'm comforted by seeing some familiar ones on there from having read other people's successful stories as a result of their treatment drug. Avastin seems like a must-try for everybody, I can't help but think.
In any case, just because--no doubt are we going to get at least one other oncologist's opinion on what would be best done as a first line of treatment.
We now have the to-date medical records since being hospitalized to take to other places.
My dad should be out of the hospital by tonight, first time out in almost 2 weeks. As long as he shows he has the energy, and will eat even if his appetite is suppressed for whatever reason(s). It's exciting, a new chapter, better than being in the hospital, yet ever reminding of what's to come...you know... And I can really feel my dad sensing that as well. It makes me quite sad. He'll look at our home differently upon his return. But Since chemo treatment awaits in a little bit under a month from now, I'm anxious to start feeding him the rightest, SAFEST of foods, even though it'll be a likely unpleasant challenge. (He's never been one who loved veggies, for one thing, certainly not raw.) It has to be done.
Til' next time, friends.
/Adam
Watch out for raw vegies. Read what others have been able to eat with a colostomy. Also, post-op, check to see if he needs to be on a low fiber, low residue diet to facilitate healing. Yes, it's lots of "bad" stuff - plain rice, boiled chicken, few vegies, some cooked fruits, etc., but you must do everything to allow him to heal. Also, after a colostomy, raw foods may irritate him.
By the way, I've heard of numerous cases where chemo has addressed the liver mets. Yes, you're in shock, but your dad may well have a long life ahead of him. Wishing you and your family well,
Alice0 -
My first (and so far) onlyMagrao said:Thanks, all of you
I really appreciate the replies, you all. Thank you. It's just nice to know at the very least that people outside of hospital staff know what I'm speaking of and where I'm coming from... And to know that information can be sent to me along the way.
The liver mets have spread from the rectal cancer. That's how I understand it. Technically "colon cancer", though, said the oncologist?
Having never been experienced with an oncologist before (that goes for all of us in my family), naturally I don't get a good vibe from him (like as a person--mostly "all business" and lacking a clear sense of compassion), but his chemo drug plan *options* so far include:
Ovaliplatin (sp?) *or* CPT-11
5FU LV *or* Xeloda
Avastin
Erbitux *or* Parititmale (SP!?)
(Sorry, doctor's handwriting is hard to read clearly!)
What do you all think?
I'm comforted by seeing some familiar ones on there from having read other people's successful stories as a result of their treatment drug. Avastin seems like a must-try for everybody, I can't help but think.
In any case, just because--no doubt are we going to get at least one other oncologist's opinion on what would be best done as a first line of treatment.
We now have the to-date medical records since being hospitalized to take to other places.
My dad should be out of the hospital by tonight, first time out in almost 2 weeks. As long as he shows he has the energy, and will eat even if his appetite is suppressed for whatever reason(s). It's exciting, a new chapter, better than being in the hospital, yet ever reminding of what's to come...you know... And I can really feel my dad sensing that as well. It makes me quite sad. He'll look at our home differently upon his return. But Since chemo treatment awaits in a little bit under a month from now, I'm anxious to start feeding him the rightest, SAFEST of foods, even though it'll be a likely unpleasant challenge. (He's never been one who loved veggies, for one thing, certainly not raw.) It has to be done.
Til' next time, friends.
/Adam
My first (and so far) only grandchild was born 4 days before my dx. Talk about a mix of emotions. uf-dah The living in 2 different worlds, this feeling does get better as one finds a new normal. I don't ever remember being SAD- I do remember wishing it was one of my sisters going through this and not me! j/k It is a shock to the system- but shortly things will become more routine and days pass, experiences happen- for me it was holding my grandchild- and in those fleeting moments, I was just a glowing grandma. Diet changes have been gradual- first was to totally cut out red meat and basically I could eat salmon 24/7. I now juice daily, take vitamin D, walk, drink water and then more water. I love yogurt-fresh fruit and and we have a wonderful garden. But all of this took time- and although I was very open to suggestions and ongoing support from my family, it was important that I had some control over the flow and the changes.
Your Dad's medical oncology recommendations at this point sound pretty right on. Mine at Mayo in Rochester said for stage 3B the treatment was universal, didn't matter where I went, the treatment would be the same. He encouraged me to work with an oncologist close to where I lived. Best damn advice I have ever gotten. Not only cut down on drive time- but I felt like the staff, my doctor, the other patients were my neighbors. Not really, but the clinic about a mile from my home and that was just the feeling I had. It felt safe and not at all threatening. It also turned out to be the best for me as I was hospitalized 3 times for a 5-7 day period each time and toward the end of chemo was getting fluids daily. I have a fabulous connection with my oncologist- I have seen him go to bat for me, listen to me and treat me with kindness and respect. These things are important, they should be things you watch out for as your Dad goes through the process of picking and working with a doc.
Give your Dad a hug from all of us. He is going to be ok. And so are you!0 -
You're rightabrub said:Big warning on the diet
Watch out for raw vegies. Read what others have been able to eat with a colostomy. Also, post-op, check to see if he needs to be on a low fiber, low residue diet to facilitate healing. Yes, it's lots of "bad" stuff - plain rice, boiled chicken, few vegies, some cooked fruits, etc., but you must do everything to allow him to heal. Also, after a colostomy, raw foods may irritate him.
By the way, I've heard of numerous cases where chemo has addressed the liver mets. Yes, you're in shock, but your dad may well have a long life ahead of him. Wishing you and your family well,
Alice
Hey, thanks for the straight shot of info. I nearly got ahead of myself with the raw veggies, for one example, what with the need for only easily digestible foods in my dad's new colostomy condition. It also doesn't help that he doesn't have the biggest appetite, probably for various reasons.
We've been having him drinking the Naked "Green Machine" juice for his veggie nutrient intakes so far. So far, so good. At least he approves of the taste (actually quite likes it). But also, real (organic) veggie juicing is right around the corner...and hopefully that'll be alright on him, especially since I'm sure it won't taste as great as the Naked blend.
I guess, more than anything, I'm just afraid we'll miss the best treatments out there in time that will better his chances to the fullest, what with so many people saying one thing, and the other party saying something else, including our chiropractor who is heavily into holistic stuff. So, who do we believe, truly? Naturally I take bits from all corners, but it'd be nice if there was someone employed with that joint mindset and directed his case in the safest yet healthiest route possible. I know veggies are only going to help, but WHAT ELSE?
The only supplements he's taken on top of his medicines since the hospital discharge has been vitamin C, mostly 'cause I'm afraid to give him anything else supplement-wise since I hear there's a possibility of a backfire, particularly 'cause this cancer involves his liver. I wouldn't dare take that chance, but it's still agonizing, you know.
I'm still waiting on my Rare Cancer Alliance forum membership activation, so I can post more on this all.0 -
Post Surgery NutritionMagrao said:You're right
Hey, thanks for the straight shot of info. I nearly got ahead of myself with the raw veggies, for one example, what with the need for only easily digestible foods in my dad's new colostomy condition. It also doesn't help that he doesn't have the biggest appetite, probably for various reasons.
We've been having him drinking the Naked "Green Machine" juice for his veggie nutrient intakes so far. So far, so good. At least he approves of the taste (actually quite likes it). But also, real (organic) veggie juicing is right around the corner...and hopefully that'll be alright on him, especially since I'm sure it won't taste as great as the Naked blend.
I guess, more than anything, I'm just afraid we'll miss the best treatments out there in time that will better his chances to the fullest, what with so many people saying one thing, and the other party saying something else, including our chiropractor who is heavily into holistic stuff. So, who do we believe, truly? Naturally I take bits from all corners, but it'd be nice if there was someone employed with that joint mindset and directed his case in the safest yet healthiest route possible. I know veggies are only going to help, but WHAT ELSE?
The only supplements he's taken on top of his medicines since the hospital discharge has been vitamin C, mostly 'cause I'm afraid to give him anything else supplement-wise since I hear there's a possibility of a backfire, particularly 'cause this cancer involves his liver. I wouldn't dare take that chance, but it's still agonizing, you know.
I'm still waiting on my Rare Cancer Alliance forum membership activation, so I can post more on this all.
The juice is OK, but don't skimp on high calorie/high protein drinks like Boost. His body has taken a big hit and is struggling to heal (the removal of the rectum takes longer to heal than almost any other organ). He needs lots of protein to help that along. Once he is healed you can start thinking about the everyday healthy diet.
I lost almost 30lbs when my rectum was removed, and my appetite took weeks to return. His may take a bit as well. Anything that will keep his weight up is a benefit.
Walking is good. If you can get him up to take short walks it will help with the healing.
Colon cancer also referred to as colorectal cancer, so his Onc is right in calling the liver mets colon cancer. The good news about the squamus cell (as I understand it) is that it responds well to radiation therapy.0 -
hello from a San Diegan
Hi Adam,
Do you live in San Diego county? I live in Fallbrook, north San Diego county. My regular oncologist is Dr. Helton at San Diego Cancer Center in Vista, but I have been to see Dr. Fanta at UCSD/Moores Cancer Center several times & Dr. Lowy at UCSD did my liver surgery. I'm just curious if your dad is going to any of the same doctors.
I'm glad your dad is open to the juicing idea. I don't have a colostomy, so I can't comment on how things affect that. I have troubles enough with my digestion without the colostomy bag (I am dealing with a recurrent rectal tumor). I was dx as stage IV rectal cancer with tumors in my liver and both lungs, 4 years ago last month.
I don't know if some of the supplements I've taken in addition to the chemo have helped or not, but I tend to think that they have! I've just started on a healthier way of eating this past January/February- wish I had done it earlier, but better late than never! I also started on several supplements at the same time. Prior to that, I have been taking cimetidine (Tagamet) for the past two years. There was a study out some time ago that had stage II and III colorectal cancer patients who had just had colon resections. Half of the group took Xeloda (an oral chemo, like 5FU) for a year. The other half also took Xeloda for a year but took 800 mg/day of cimetidine (over the counter Tagamet, the antacid). The group who also took the cimetidine had far less recurrences than the group that took just the Xeloda alone. The idea is that the cimetidine does something to help prevent the cancer spreading. Now, I take it even though my cancer is already stage IV because my onc says that it won't hurt, so why not take it & it will hopefully help prevent any further spread than I already have. Well, don't know honestly if it's from that or not, but I have not had any tumors pop up in any new places, other than where it was upon diagnosis during the past two years I've been taking the cimetidine. My onc also said there was some other study that shows it can somehow help the chemo to work better- not sure on those specifics.
Other things I take currently: Cesium chloride (only take under a doctor/naturopath's guidance, as too much can cause side effects- cesium is to cause the body to become more alkaline at the cellular level- cancer supposedly thrives in an acidic environment so to try to make it more alkaline is good- you can just work on avoiding acidic foods and drinks also), vitamin B-6, vitamin B-12, astralagus (an antioxidant herb), spirulina & chlorella (called the superfoods- help me greatly with my red blood cell counts and my platelet levels- have been in the normal range even while on chemo- my onc and nurses have been amazed every time my blood draw results come back),and I do munch on some apricot kernals- about 6-12 a day (start with 3 a day & build up slowly). I had gotten away from doing this & now that my CEA went up recently pretty high after being lax and not taking my supplements for a few weeks and forgetting about the apricot kernals, I am now back on them again, hoping my CEA/tumor marker will show a drop this next time it's tested.
Well, so far anyhow, my supplements haven't made the cancer go away, but my bloodwork numbers have been excellent (other than the tumor marker, that is)- it amazes my oncologist and nurses every time. I know that natural things take some time, so it is my hope and prayer that doing these things WILL make a difference for me. One thing I do know- is 4 years later after a very grim prognosis upon my diagnosis, I am still alive, still here, still functioning pretty well, actually (I do pretty much everything I ever did & am even homeschooling my daughters part of the week).
Take care & best wishes & prayers-
Lisa0 -
Hey Adam
Wow, I was trying to find a certain page with my usual screen name and I found your post! In which you found my post(s) both here and at RCA and you also found some of Winnie's story. So, the obviously good news is that I lived for a year, and as of 2 weeks ago, lived for a year and a half! Both of those prognosis were given to me, and it looks like I'll live 2 years which was the longest time anyone gave me.
I found this website helpful, and have also found great insights into the other group where you found my first post. In that forum, there are a handful of us with Stage 4 Squamous cell anal cancer who are trying to find ways to live longer. I am here probably because I did the TX that Winnie did. But it didn't fix me entirely so I'm now in a clinical trial that is showing some promise for this cancer.
You must be young if your dad is only 55. Keep up the hope and start learning whatever you can. My first question would be if it was Squamous cell anal cancer wrongly diagnosed as Rectal cancer? You did say squamous cell somewhere in your posts.
Hang tough!
TIM0 -
Continued Thanks, Updatestpmack37 said:Hey Adam
Wow, I was trying to find a certain page with my usual screen name and I found your post! In which you found my post(s) both here and at RCA and you also found some of Winnie's story. So, the obviously good news is that I lived for a year, and as of 2 weeks ago, lived for a year and a half! Both of those prognosis were given to me, and it looks like I'll live 2 years which was the longest time anyone gave me.
I found this website helpful, and have also found great insights into the other group where you found my first post. In that forum, there are a handful of us with Stage 4 Squamous cell anal cancer who are trying to find ways to live longer. I am here probably because I did the TX that Winnie did. But it didn't fix me entirely so I'm now in a clinical trial that is showing some promise for this cancer.
You must be young if your dad is only 55. Keep up the hope and start learning whatever you can. My first question would be if it was Squamous cell anal cancer wrongly diagnosed as Rectal cancer? You did say squamous cell somewhere in your posts.
Hang tough!
TIM
Hey, everybody...and Tim! I appreciate the words, positive energies, and stories. I apologize for not being able to reply to everything...but nothing goes unappreciated, certainly not unread!
So, since I last replied, recently my dad has gone to his first formal oncologist appointment (not for chemo yet, but to see the familiar oncologist at his office for the first time). There the oncologist did notice signs of jaundice, and that had the doctor thinking we should start treatment sooner than originally expected, 'cause of the colostomy recovery and all. (He has been physically recovering great from that, by the way.)
Something I didn't mention at first, but has come up again with more significance--sometime within the first week at the hospital, supposedly only after we'd known about the liver concerns through the biopsy results, my dad was vocal in his experiencing some slight right abdominal pain, especially upon breathing, pretty much in the liver region. At the time he rated it a 5 on the discomfort scale. Since then, he's now said it's on the pain scale, and at about a 6-10 upon breathing deeply. This detail in conjunction with the oncologist's examination of his jaundice also had him thinking we ought to start chemo sooner than expected.
Not totally important, but once the onc realized this all, he went to examine the porta cath on my dad (above the heart location) and noticed there was a kink in the tube near the opening, basically resulting in a tent-like shape of skin in one small area. Having never dealt with this stuff before, we all thought this was normal, and I can almost guarantee it's always looked like that since I first saw it (less than 24 hours from when it was put in), but needless to say we were upset to hear that since he'd been in the hospital a week since that was put in, and the onc saw him since the surgery yet chose not to examine that in which he would specifically be dealing with as his onc, nor did the surgeon who saw him want to see how the porta cath appeared post-op. Not to mention the amount of nurses who saw him after his surgery, and at least one nurse dealt with the porta cath for IV usage specifically. It's baffling, and...well, unacceptable.
The porta cath has been surgically fixed as of yesterday.
The surgeon has updated us on the pathology of the cancer, also, and it is actually:
"adenocarcinoma with squamous differentiation"
Hm.
Again, it was a portion of the rectum that was infected and the same cancer is what appeared to be on the liver, said the surgeon.
There was always split of opinion at first with the biopsy results with these two pathologies, just FYI, in case I didn't imply that anywhere else.
I don't know what this changes...I don't think I've ran into stories where there was both types involved.
*sigh*
We're supposed to be talking to the oncologist today, one way or the other, about what to do from here on out, and if we can start chemo TOMORROW... Like, I wouldn't be surprised if the surgeon and oncologist didn't communicate about the concluded pathology had my mom not asked the surgeon yesterday. And I'm telling you, if this doesn't pan out well with this oncologist in the next two days, we're packing up and going to San Diego for how highly spoken of that area is in dealing with this all. (I'm in the Inland Empire--Riverside area in California, by the way.) I know some doctors can traditionally be like this from time to time, but this isn't how I'd imagine it would be with serious medical matters like this. The only thing comforting is knowing the chemo drugs are the same anywhere, so as long as the oncologist administers them right, okay, whatever... But he's done a pretty poor job at sending good vibrations from the beginning.
We're going to be throwing every question regarding treatment options as soon as we talk to him, presumably today. The options weren't brought up in the one and only onc appointment because the issues mentioned earlier took precedence, I guess, and time was limited.
Here's the drug list the onc wrote out, the first section being what was written the second time the onc saw my dad in the hospital, and the second listing being the most updated coming from that formal appointment:
NOTE: Written out exactly how the oncologist has for us on paper.
Oxaliplatin OR CPT-11
5FU LV OR Xeloda
Avastin
Erbitux OR (something I can't even READ...something like "Pavititemale")
\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\
Oxaliplatin + F5U LV + Avastin
CPT-11 + F5U LV + Avastin
Oxaliplatin + F5U LV + Erbitux
CPT-11 + F5U LV + Erbitux
Also, clinical trials have been discussed as an viable option, even though it's much, much more expensive.
Edit: For some reason I still am not getting a confirmed registration to the Rare Cancer Support forum...0 -
SOMagrao said:Continued Thanks, Updates
Hey, everybody...and Tim! I appreciate the words, positive energies, and stories. I apologize for not being able to reply to everything...but nothing goes unappreciated, certainly not unread!
So, since I last replied, recently my dad has gone to his first formal oncologist appointment (not for chemo yet, but to see the familiar oncologist at his office for the first time). There the oncologist did notice signs of jaundice, and that had the doctor thinking we should start treatment sooner than originally expected, 'cause of the colostomy recovery and all. (He has been physically recovering great from that, by the way.)
Something I didn't mention at first, but has come up again with more significance--sometime within the first week at the hospital, supposedly only after we'd known about the liver concerns through the biopsy results, my dad was vocal in his experiencing some slight right abdominal pain, especially upon breathing, pretty much in the liver region. At the time he rated it a 5 on the discomfort scale. Since then, he's now said it's on the pain scale, and at about a 6-10 upon breathing deeply. This detail in conjunction with the oncologist's examination of his jaundice also had him thinking we ought to start chemo sooner than expected.
Not totally important, but once the onc realized this all, he went to examine the porta cath on my dad (above the heart location) and noticed there was a kink in the tube near the opening, basically resulting in a tent-like shape of skin in one small area. Having never dealt with this stuff before, we all thought this was normal, and I can almost guarantee it's always looked like that since I first saw it (less than 24 hours from when it was put in), but needless to say we were upset to hear that since he'd been in the hospital a week since that was put in, and the onc saw him since the surgery yet chose not to examine that in which he would specifically be dealing with as his onc, nor did the surgeon who saw him want to see how the porta cath appeared post-op. Not to mention the amount of nurses who saw him after his surgery, and at least one nurse dealt with the porta cath for IV usage specifically. It's baffling, and...well, unacceptable.
The porta cath has been surgically fixed as of yesterday.
The surgeon has updated us on the pathology of the cancer, also, and it is actually:
"adenocarcinoma with squamous differentiation"
Hm.
Again, it was a portion of the rectum that was infected and the same cancer is what appeared to be on the liver, said the surgeon.
There was always split of opinion at first with the biopsy results with these two pathologies, just FYI, in case I didn't imply that anywhere else.
I don't know what this changes...I don't think I've ran into stories where there was both types involved.
*sigh*
We're supposed to be talking to the oncologist today, one way or the other, about what to do from here on out, and if we can start chemo TOMORROW... Like, I wouldn't be surprised if the surgeon and oncologist didn't communicate about the concluded pathology had my mom not asked the surgeon yesterday. And I'm telling you, if this doesn't pan out well with this oncologist in the next two days, we're packing up and going to San Diego for how highly spoken of that area is in dealing with this all. (I'm in the Inland Empire--Riverside area in California, by the way.) I know some doctors can traditionally be like this from time to time, but this isn't how I'd imagine it would be with serious medical matters like this. The only thing comforting is knowing the chemo drugs are the same anywhere, so as long as the oncologist administers them right, okay, whatever... But he's done a pretty poor job at sending good vibrations from the beginning.
We're going to be throwing every question regarding treatment options as soon as we talk to him, presumably today. The options weren't brought up in the one and only onc appointment because the issues mentioned earlier took precedence, I guess, and time was limited.
Here's the drug list the onc wrote out, the first section being what was written the second time the onc saw my dad in the hospital, and the second listing being the most updated coming from that formal appointment:
NOTE: Written out exactly how the oncologist has for us on paper.
Oxaliplatin OR CPT-11
5FU LV OR Xeloda
Avastin
Erbitux OR (something I can't even READ...something like "Pavititemale")
\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\
Oxaliplatin + F5U LV + Avastin
CPT-11 + F5U LV + Avastin
Oxaliplatin + F5U LV + Erbitux
CPT-11 + F5U LV + Erbitux
Also, clinical trials have been discussed as an viable option, even though it's much, much more expensive.
Edit: For some reason I still am not getting a confirmed registration to the Rare Cancer Support forum...
Onc just called back.
I'm skipping further upsetting details in how he continues to handle himself, recalls important information regarding his patient, etc.
My dad and mom are going in to see him within 2 hours here...to be evaluated. If I am to stay at home, I'm at least sending with my mom a couple of papers I've written information on regarding oncologist William Stanton III in San Diego and his treatments based on JD Hainsworth of TN, and specifically the drugs used there, as well as everything else I can think of to have asked. I assume we'll find out for sure if my dad is qualified for the clinical trials as an actual option, depending on how the blood test results came out. (I forgot that that was a factor.)
I'll likely be back for at least a third post by tonight with another update.
P.S. I forgot to clarify that the onc said my dad's liver is a bit swollen, when he felt it after my dad talked about the pain there.0 -
R.I.P. DaddyMagrao said:SO
Onc just called back.
I'm skipping further upsetting details in how he continues to handle himself, recalls important information regarding his patient, etc.
My dad and mom are going in to see him within 2 hours here...to be evaluated. If I am to stay at home, I'm at least sending with my mom a couple of papers I've written information on regarding oncologist William Stanton III in San Diego and his treatments based on JD Hainsworth of TN, and specifically the drugs used there, as well as everything else I can think of to have asked. I assume we'll find out for sure if my dad is qualified for the clinical trials as an actual option, depending on how the blood test results came out. (I forgot that that was a factor.)
I'll likely be back for at least a third post by tonight with another update.
P.S. I forgot to clarify that the onc said my dad's liver is a bit swollen, when he felt it after my dad talked about the pain there.
My dad is gone now...without pain.
I love you, pae. Forever.0 -
So sorryMagrao said:R.I.P. Daddy
My dad is gone now...without pain.
I love you, pae. Forever.
I am so sorry for the loss of your dad. I remember the huge hole in our lives when my father-in-law passed away. I hope that soon you will only have the beautiful memories of your life with your dad to remember--I am sure they are many.0 -
CondolencesMagrao said:R.I.P. Daddy
My dad is gone now...without pain.
I love you, pae. Forever.
I'm so sorry for your loss. I hope the memories you made together will help you through this tough time of saying goodbye.0
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