CT Scan results, 2 months after last Y90 very bad

KarenMG said:

Hi Jan

What chemo did you take? I was told that immunotherapy was not an option for me due to some kind of testing I had. 

Thanks for your thoughts. 

❤️

Ah, I see. They did a test on my tumour to see if it would be susceptible to the immuno treatment. It's Panitumumab.

Jan

SandiaBuddy said:

WWYD

Sorry about the bad news.  You ask, "what would you do?"  I think about that issue with every test and every doctor's visit. I would definately make the bucket list trip to Hawaii.  I would definately try to live every minute of every day to its fullest. I would do all of the natural things available to me to prolong my life while still maintaining quality of life.  I would drink a lot more.  I wish you all of the best with the challenges you face.

Great advice!

beaumontdave said:

I'm sorry Karen, that's a

I'm sorry Karen, that's a hard place to be in, what's the right path now is a tough call. I got through my treatments fairly well, so I'd always try the next treatment, but you know your body and what your mental/emotional state can handle. I wish you some kind of peace with your choice, and Hawaii certainly seems a good place to let it go for awhile.............................................Dave

Plus, Hawaii has abundant vitamin D from sunshine.  Sounds like the forum wants you to go to Hawaii!

I am sorry your results weren't better. Obviously Hawaii.  Why would you not? i would + live healthy as you can + 2nd opinion , love your new photo. here's some links that maybe be helpful from this side of the world. xx

https://gicancer.org.au/agitg/

http://gmri.org.nz/cms/

https://www.malaghan.org.nz/

I am sorry to read your post.  It absolutely stinks to see that.  

Let's start backwards for a second - go to Hawaii and do whatever else you want.  BUT (and this is not easy) do find someplace else and research things as part of this.  (Cannot remember where you are now.)  MD Anderson, Sloan Kettering, Dana.  Look into options and also trials.  Now the long part -

About a year and a half ago my cancer came back yet again. Inoperable.  And has been spreading.  By a year ago it was growing like crazy.  They stopped counting the lung mets.  Have tumors in my spine and back.  And lymph nodes.  2 months or so ago scans show some things were still growing despite the chemo (but others stabilized and a couple may be dying.)   Then they told me to add Avastin.  Reading the risks scared the h--l out of me.  The risks of all these drugs are horrifying if you read them.  But I added it.

All that being said there would be a point where I may turn things down.  Each of us have different experiences. The thought of another abdominal surgery scares me (and I only had one.)  I have been really fortunate overall in terms of handling ttreatments.  Or just ignoring how bad treatments are (My wife sees how it is more than me and that I underplay it when describing it to people.)  I feel pretty bad at this point 7 out of 14 days when cycling through.  But doable.  I sleep.  Mild nausea.  And a ton of the rest.  But to me tolerable.  And on the bad days I stil am able to manage to do something even for 15 minutes to an hour.  Exercise of some type.  Walking, something.  I may then sleep for another 14 hours.  But it is a cycle I can work through.  But my first treatment of this round of chemo (FOLFORI) was BRUTAL.  I was so sick that I told my wife I was done with treatment if this was how it was going to be.  I was scared beyond belief of the second treatment (which was delayed) based on the first treatment.  But they dialed down the cocktail and that worked.  Have been "fine" since.

A scan last week showed tumors in my spine growing despite radiation treatment and the chemo.  But my doctors keep on going with the positive in all this.  Not painting fantasy, but saying could be continuing inflamation as tumors die and whatnot.  Who knows.  There are some other bits and pieces going on, but the above gives the idea of where I am.   An appointment next week may turn things further to the negative side.  Will see.

What I would do is 

a.) Find other doctors/centers.  Als0 Oncologists are not interventional radiologists.  And no matter how much they talk or not, you never know.  Long story short, after four years plus of being in this, the more I see the more I have determined that you need to fight and push doctors and get answers. And I am going to one of the best places in the world for this.   

b.) Look for trials, including immunotherapy.  I have some things that immunotherapy normally does not work on.  And I was in a trial that did not work.  But there is no downside to this, other than not going through regular chemo which may help (ties into point c below in terms of decision making).  

c.)  Find out disease progression pace.  There are times where the cancer blooms/becomes fast growing.  When my stuff came back in the lungs (I was inoperable due to lymph nodes and at that point maybe a dozen or so tumors were situated in lungs, no point for lung surgery) that I had time to decide for chemo.  That it was okay to wait and watch.  That chemo now or later would not really change things.  About a year later when things went crazy growth, it was chemo time for me.  So maybe the decision to get on chemo right away is not needed.  That starting now or a month down the road, two months, whatever down the road, may not make a practical difference.  

d.)  Go to Hawaii, ESPECIALLY if point c is in your favor.  Getting away from the decisions and grind can make the decision easier.  Or charge your battereries, as it were, for the next parts of treatment.  Or give your clarity about your decision.

e.)  Try to exercise/move as much as possible..  I should be on the couch on oxygen based on my situation.  Instead I am staying ahead of things still.  I have run over 20 miles this last week on the treadmill and outside.  Not easy on some days, can take me two hours to get off the couch to after sitting down to put my sneakers on, especially close to infusion days and disconnect day, but it is buying me time still a year and a half into this recurrance.  And as Sandia mentioned, look at alernatives to add.  I am taking mushorroms and other things.  There are some cautions on some drugs, but overall low risk/high reward (and also ties into point c).  Accupuncture has helped me with the ressidual back pain from the tumors, which is minor at this point.  (Radiation did take out part of the tumor which seemed to be more responsible for the pain I had.)

I am probably biased at this point based on the posts you and I have had, and to the extent that I am painting it as get treatment, I apologize.  All of us are dealing with different circumstances and I understand there is a time where it is proper to stop treatments and the rest.  I just hate seeing it, even when it is the proper decision, and probably more so with my friends I have met during all this and being part of the boards.

Again, I am sorry to read the news.  But you will wind up making the proper decision for you. 

The only thing I insist on (like the others) - Hawaii!!!  Helicopter tour over the island is great  Going around the volcanoes and seeing the steam as the lava meets the ocean is incredible. Macadamia nuts and coffee also    While I cannot officially condone Sandia's regarding drinking, my official medical opiinion  is for a bunch of Mai Tai's on a beach in Hawaii while looking at the ocean (added bonus for sunrise and sunset)   [DISCLAIMER JUST IN CASE:  My official medical opinion is neither official nor medical.  And I am unofficially condoning Sandia's opinion.  If a glass of wine is something you like with dinner, or whatever, why not, even if we are not "supposed" to.]

KarenMG said:

Hi there

I appreciate and pretty much agree with all you've said. I agree that the trip is definitely in order. I cannot bring myself to try out some new toxic medication when I feel pretty much like death warmed up already.

I will take a trip with definitely first class plane seats, everything first class. I can afford it so why not? I do need to charge my batteries!! Maybe get a new perspective on things.

I am done with this Cancer center. In the 2 years I've been going there, I've had some very bad experiences with doctors and nurses. They are either overwhelmed with work and patients or just complete ****. I try to be understanding because I am a retired nurse and have been on both sides. Maybe that is why my expectations are high.

So when I can pick myself up off the floor emotionally, and feel like I can make the trip I will go and start over with a new treatment center. I wanted to try MD Anderson, I always have heard good things about that place.

I thank you truly so much for all your comments and suggestions. Time for a new plan for sure.

My best to you!

Karen

I have been doing that also.  Cannot agree more if it can be done.  

As to the docs and nurses - screw them, there is no need for that BS (I am a volunteer EMT for quite awhile.  So when health care providers are out of line, it really pisses me off.  When I deal with patients I treat them as I would want my family and friends to be treated.  Granted it is a different thing for nurses and doctors in terms of longer contact and all the rest, but patient care is paramount.  Especially when dealing with patients who have cancer.)

You need to post photos of your trip to Hawaii