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Any hope for Stage IV with poor performance status?

fringetree
Posts: 66
Joined: Dec 2009

My dad was diagnosed with Stage IV cc about three months ago. Apparently his cancer is very aggressive(he was feeling well, working on his kitchen remodel, and climbing ladders one week before dx!) and his doctor felt his tumor had not responded to chemo (he had three weeks of 5FU with oxaliplatin-one half dose and one full dose). His performance status is bad (ECOG 3, which means he is in bed all day, although he can still hobble to the bathroom and stuff). He is eating a little, but he says he is really forcing himself.

Anyway, his doctor told us there was nothing more that could be done, and that the main deciding factor is that chemo just doesn't work on people with such poor performance status. I still can't hlep thinking it is worth trying a different regimen.

So my question to all you stage IV survivors is, has anyone had any success with chemo even though they had poor performance status? Or am I in complete denial?

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Hi, I don't know anything about performance status. Is this his activity level since surgery or was there a surgery?

You said your Dad only had 3 weeks of treatments. If he couldn't tolerate that, there is no way he could tolerate 6 months or 'rest of your life' as is given for many Stage IV's. Is it the chemo that has him in bed or the liver involvement.

How old is your Dad? Has he given up hope?
~~~~~~~~~~~~~~~~~~
I see Dad is only 67. I'm 59 in a few weeks so that's young to me. I also looked up the ECOG and see that 3 is really bad. 0 is perfect and 5 is dead.

Your other post said Dad was in he hospital for a month when they put in the stents. I didn't see where he had surgery to remove any of the cancer. I assume they felt he was too advanced and that trying to shrink it with chemo was the best way to go.

You also said Dad has given up and accepted this. I think that's a BIG problem. Many of our Stage IV's will tell you that a right frame of mind is so very important.

May I pray for your family?

Diane

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

See if he can have his cancer oncotyped for all of its genetic abnormalities. It is possible that other drugs may work and they will tell you which ones. Try some clinical trials. There are dozens of clinical trials going that are showing some promise for advanced stage colon cancer. Any of the protein inhibitors could work. I would look into the olaparib trial or the fostamatinib trial. He should be able to get some help. If his cancer is isolated to the colon and liver, there is a living donor transplant trial going on.
Even if it isn't isolated to the liver, they should be able to perform some type of procedure to slow the progression. RFA and embolization are possible. I know my embolization in september has added at least six symptomless months to my life. Good Luck, maybe look for a new Dr.

fringetree
Posts: 66
Joined: Dec 2009

I have looked into some clinical trials, but most of them require a "good" performacne status (0-1) but I haven't seen the trials you mentioned. I will check them out. Are RFA and embolization fairly common procedures or do you have to travel to certain medical centers?

fringetree
Posts: 66
Joined: Dec 2009

Hi Diane,

Performance status is an evaluation of a patient's activity level, which also provides a rough guage for their overall health. My father is at Stage 3. That is, he is spending more than 50% of his waking hours in bed and is limited in "self-care", but is not completely bedridden. A week before his diagnosis (3 months ago) he was doing construction on his house and climbing ladders and was a healthy vibrant 67 year old.

His liver tumors were not resectable, but he had stents placed in his billary ducts and his colon. He actually did ok with the chemo. He was tired and queasy, but he actually felt better than he had before chemo. He continued to eat and actually gained weight after his first treatment. He looked so peppy on the day of his second treatment the Dr thought he was having a great response. So, I think it is the liver and not the chemo keeping him in bed.

Anyway, a couple of days after his second treatment, he fainted from a painful BM, so we took him to the ER. He passed a lot of blood for a few days (he had been bleeding a little bit ever since the stents were placed before chemo). My gut has always said that was an acute event that worsened a pre-existing problem and was not due to the chemo (and the bleeding has cleared up completely now). While he was in the hospital, a CT scan (taken in week 3 of chemo) compared to an earlier CT scan (two weeks before treatment) showed the tumor had grown. So, the doctor told us there was nothing else he could do. I just can't help but think there wasn't enough time for the chemo to work, that the tumor growth could have occurred before the chemo started, and that even if the tumor had grown, it would have been worthwhile to try another regimen.

My father has lost hope, mostly I think because his doctor (who he trusts completely) told him there was no hope. Prior to that, he was fighting and willing to act as agressively as possible. I'm not sure what to think. I don't want to push for chemo if it offers no hope and is going to take away quality of life, but at the same time I feel like I haven't done enough to make sure he is getting every opportunity available.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
"a couple of days after his second treatment, he fainted from a
painful BM, so we took him to the ER. He passed a lot of blood
for a few days (he had been bleeding a little bit ever since the
stents were placed before chemo). "

"the doctor told us there was nothing else he could do. "

Those two lines alone would have me hunting for a colorectal
surgeon and a gastrointestinal specialist for another opinion or three
(and get ones that aren't in the same "group" or location).

He had a loss of blood from the operation, and more loss of blood
shortly after, he's finally come down off the "morphine high" and
anesthetics that can last for months after surgery, and the doc feels
he has a low activity level? Has he remotely considered the amount
of depression a patient goes through after finding out they have
cancer.... or even just the surgery for it alone?

Forget the "trust" and see another qualified specialist for another opinion.
And do it quick, waiting does not pay.

The bottom line, after all is said and done, and if all else fails?

There are alternatives to western medicine. Search this forum; there
are other viable ways to fight cancer.

fringetree
Posts: 66
Joined: Dec 2009

It's funny, I barely trust anyone to cut my hair, so why am I trusting a single person to make decision about my dad's life?

I am going to talk to my dad about sending out his records for second opinions as some other folks suggested in another post I started (I feel like I am "double dipping"...sorry I am new to this whole message board thing!). I do worry that a lot of his decline in energy is just the loss of hope, and maybe being proactive will help him.

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

I'm very sorry that you and your dad are going through all this, and glad that you came to the board. In my experience as a stage 4 survivor, you need to have your medical team working for you and rooting for you through this. There are many here, including me, who have fired their docs and looked for others who were willing to work with them through very difficult treatments. How fortunate your dad has such a strong support in you, and there are also good surgeons and oncologists and complementary care folks out there who can be on the team too. I recommend a major cancer center as well, like a Sloan-Kettering or MD Anderson which are NCCN network hospitals. I go to a NCCN network hospital, the Huntsman Cancer Insitute in SLC, and I consider this to have been critical for my response and care. I also use a full complementary medicine team–acupuncturist, naturopath, and internal medicine/anthroposophical doc through whom I receive subcutaneous mistletoe injections which are used in Europe for cancer. Also seriously consider the genotype testing for the tumor at Caris DX as John mentions above. Cancer is very individualized and not all colorectal tumors are the same so a general chemo cocktail drug may not work. I am KRAS mutant for example and some first line/second line colorectal drugs like Erbitux would not work on my tumor. It's nice to avoid the ones that won't work and not subject yourself to the significant side effects without any gain.

Good luck and keep on asking questions. Some fine knowledgeable folks here.

all the best, Leslie

fringetree
Posts: 66
Joined: Dec 2009

Apparently my reply didn't get posted!

I'm sorry that you are going through all this, too. I can't express how helpful it is to hear stories of hope such as yours. I love that you fired your docs! I'm so sick of feeling like the doctor is the boss and not the other way around.

It looks like Dana Farber is an NCCN hospital, so I am planning on talking to my father about trying to get a second opinion there, as well as some centers other people have mentioned.

Ironically, I interviewed for a job at a lab (OHSU) that does genetic testing on gastrointestinal tumors, among other things. I really wish I had been a little more enthusiastic about the job (I was fairly honest with them that I didn't want to supervise people...stupid girl) because I would have been immersed in all the current research and had some inside information, perhaps. I have been considering sending a sample to them (or perhaps Caris DX as you and John suggest). I just worry it will be useless if I can't find a doctor to USE that information.

There surely ARE some fine and knowledgeable people on here, Leslie...yourself included.

fringetree
Posts: 66
Joined: Dec 2009

Diane,

59 IS very young, and so is 67! He was a totally vibrant, active person three months ago! It is unbelieveable how quickly this has all happened.

About one week after my dad's diagnosis, he was sent to Boston Medical Center, at the time we were told it was to do surgery on his colon. But, when we got there they decided to place a stent instead because he was too weak. And, as you say, they hoped chemo would shrink the tumor. He improved steadily until the "incident". I just wish I had fought harder from the moment the doctor told us he was stopping chemo. Now I am scared it is too late to convince my dad to fight.

I think him giving up is a HUGE problem as well. I am so glad you have all fortified me to try to talk him into a second opinion. I will absolutely respect his wishes and support whatever he wants to do, but I want to let him know that at least I haven't given up on him.

And yes, you can pray for my family! My father is profoundly spiritual, and I know he will appreciate it. I used to be a good Catholic girl, not so much anymore, but I do send my love to you and everyone else going through this struggle.

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

Many people when diagnosed with such an advanced stage of cancer simply expect to fail. Don't believe the hype. With recent medical advances it's almost a 60/40 and approaching 50/50 chance of failure vs success in battling stage 4 colon cancer. You need to find a competent DR. There is no way he has failed chemotherapy. First of all, there are two acceptable first line therapies. Your cancer has to advance while taking treatment for it to be considered a failure. Also, if one area shows a positive response and the other no response then that is not considered a failure. Most primary tumors show little or no response to chemo because they have become fully integrated with their environment. The effect the chemo has on the mets is the measure of effectiveness. If he has failed one line of treatment then there is another first line treatment and then he would be available for second line treatment. Weakness is not a reason not to treat. What does his blood work say. If he's had lots of bleeding then his hemoglobin would be low and he would be tired. More important is his WBC and segmental %. Are these preventing him from getting treatment. Even if his counts are low, they have medicine to bring those up within a week or so. Then he could get back on chemo.
Seriously, his colon tumor shouldn't be an issue. Have him take a bunch of stool softeners and drink tons of water. That combined with the stent will keep things moving. I passed out several times when I was backed up. It was hell, but it didn't kill me. Just because the tumor grew in size while on chemo didn't mean the chemo wasn't working. Often times chemo will make a tumor less dense and this less stressful on surrounding tissue. This was the case with my primary tumor. Chemo shrank several of my liver lesions and made 2 disappear all together. My colon tumor never shrank but was made much less dense and things moved along much easier after half a dozen treatments.
It sounds to me as though you guys might just be overwhelmed with negativity and despair. Now is the time for action. Get his blood work right. If it's right, tell him to suck it up and take the chemo. I was given 2 months to live almost 2 years ago. I'm still battling. I was told I would never be a surgical candidate. I've had half a dozen of them. I was given 30 days 6 months ago. I have less cancer now than then because I found some stuff on the internet that I showed to my doctors. You have to do the same. You guys have to step up and dictate your own destiny.

fringetree
Posts: 66
Joined: Dec 2009

What a pep talk! Just what I needed, seriously. We have indeed been overwhelmed with negativity and despair, but you just gave me a jolt. You have really inspired me to fight for my dad. If nothing else, I plan to fight for his right to choose to stop treatment and not have someone make that decision for him.

I learned something new about my dad (a sweet, funny, nerdy little engineer) in all of this, which is that he is one TOUGH guy. He has done everything he has been asked to do by the doctors without blinking, was willing to risk his life in surgery to take an aggressive route, and has not complained once. NOT ONCE. He is amazing. I have no doubt that if his doctor had offered him an ounce of hope and been willing to continue treatment, he would have taken the chemo like a champ. I am going to take your advice (and that of others) to seek out a more positive physician.

You must be a pretty amazing guy, too, to defy medical dogma the way you have and to make your own destiny. Rock on!

fringetree
Posts: 66
Joined: Dec 2009

8

eric38's picture
eric38
Posts: 588
Joined: May 2009

If there is anything I have learned from the stage 4 survivors on this board it is not to sit back and accept a first diagnosis or just to let things happen. Seek second, third, and fourth opinions. New things are coming out all the time and one doctor might know something another doctor doesn`t cancer is an aggressive disease so you need to be aggressive to fight it. It`s also important to know your enemy. Educate yourself on how cancer works and figure out a strategy. There is always hope. Where there is life there is hope.

Eric

fringetree
Posts: 66
Joined: Dec 2009

Thanks, Eric. That is how I feel, too...as long as you're alive, there's hope! Monday is going to be a busy day for the poor fax machine Kinko's!

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