Cancer Spreading and on last treatment option I will have many questions

First thanks to all of you who posted in my other thread about my CEA climbing and the possibility of Covid Vaccine involvement. I am starting a new thread because I feel I will get a few more views and with the bad news my last scans revealed I will have to make some pretty big decisions in the coming months.  Please read below to get an idea of where I am currently at with my disease and help to answer some of the questions I may have. I will try to answer any of your questions about my current condition if asked.  I guess the first question relates to anyone's experience with Stivarga and any data you may have concerning the effectiveness of Stivarga.  I have read a good bit about it but my overall impression is that it only works about 10% of the time and even then it has been shown to only increase survival by around 3 months vs. placebo.  

My next question would be; How does hospice work and how and when will I know it's the right time?

I guess my last question, for now, would be; How does palliative care work?  Docs at MD Anderson suggested that I seek palliative radiation care for the pain in my hip that may be caused by a new met on my Iliac bone, and possibly radiation to my original rectal tumor which has begun to regrow and is invading the perirectal space.

Thanks in advance for your replies

Tim

 

I am currently about 3/4 of the way through my second round of Stivarga and I must say that this round has been easier than the first at least so far.  It seems that the original jump in CEA was caused not by the vaccine but because of my cancer progressing.  Dr. did say that for some reason my cancer has become more aggressive than before and was growing at a faster rate than they have seen with previous progressions.  

I have been at MD Anderson for the past few days for scans, bloodwork, and appointments with my oncologist and a doctor that is over numerous clinical trials.  The bad news is that my cancer has been growing for a while now.  The first sign that something was amiss was a rising CEA with no progression noted on the ct scan this was in April of 2021 and at that time a liquid biopsy was performed.  I was called in May and told that the liquid biopsy had shown a new NRAS mutation that was not detected in Liquid biopsies 3 months before this. The docs took me off of Folfiri with Erbitux and placed me on Lonsurf with Avastin.  At my next appointment in July, my scans showed growth/progression in my liver mets so I now had definitive proof of progression.  With this progression, docs took me off of Lonsurf with Avastin and put me on Stivarga. I had an extended delay with getting my Stivarga prescription because the Insurance company took forever to approve the drug and then when it was finally scheduled to be delivered we got hit hard by Hurricane Ida. It was so bad that UPS had several weeks of no deliveries in my area so the Stivarga was sent back.  I finally got the drug on September 16th. I returned to MD Anderson on October 23, 2021 and scans showed more growth and new mets.  

I have new lesions in my perirectal area, 2 new Mets on the liver, a new met on my iliac bone in my pelvis several newly enlarged lymph nodes, numerous low-grade opacities in my lungs that may or may not be new Mets.  Could be some type of infectious process according to the oncologist at MDA, I will know more at my next scan.  My original rectal tumor has begun growing again and has invaded the perirectal space which the Drs. believe is causing all of the pain in my rectum and hip.  They also recommended that I seek out my radiation specialist to see if these tumors in the rectum and hip/iliac bone can benefit from some palliative radiation to relieve the pain.  I will find out about that next week when I see my local medical oncologist

They recommended that I stay on Stivarga since my CEA numbers are falling now.  I will get rescanned in mid-December to see if the Stivarga is working or not.  Anyway, with all this news, I asked what kind of timeline I am looking at if the Stivarga doesn't work and the oncologist at MDA said between 6 months and a year.  So I now have to decide if I want to try a phase 1 clinical trial at MDA or look for local trials.  I am not very inclined to enter a phase 1 trial since I would rather have 6 months of quality time rather than keep fighting a losing battle with an untested drug for a hail mary pass.  I have some big decisions to make in the next few weeks but I will keep fighting even if I don't do a trial.

Thanks again folks,

Tim

Comments

  • Trubrit
    Trubrit Member Posts: 5,562 **
    edited November 2021 #2
    Damnnnn!

    Not good news, Tim.  

    I can't answer any of your questions, but you know we've got your back and will support you through whatever decison you make, and journey by your side. 

    I am glad you started a new thread. 

    Cyber hugs!

    Tru

  • Real Tar Heel
    Real Tar Heel Member Posts: 272 **
    edited November 2021 #3
    I had a friend who decided to

    I had a friend who decided to go for hospice at some point in her treatment. She received some palliative radiation treatments but was at home with her family. I didn't get many details of what happened. I have discussed such treatment for another family member (not cancer related) and the NP told me is the same thing that you are hearing, you receive any treatment that will make things easier for you but perhaps not anything agressive that will make the treatment worse than the disease. It seems a very personal decision. Some like to go out swinging and some like to go out chilling.

    I think your decision to stick with the Stivarga is good as there could be some upcoming developments with trials that may be positive. You are making some time for yourself to see what happens. I would continue to investigate the trial situation at least with regards to things that don't involve new cocktails of old medications.

  • Trubrit
    Trubrit Member Posts: 5,562 **
    P.S.

    I have a friend whose husband has Stage IV Kidney Cancer. He has been on several trial across at least four years, if not longer.  She said some of the trials he suffered terrible side effects and some not. But he is still alive and enjoying life. 

    As our friend above said, it is a very personal decision, and I wish you the best as you move forward.  I also hope others on the forum, and I know there are a few who are going the route of the trials, will pop in and see your post. 

    Tru

  • LSU2001
    LSU2001 Member Posts: 32
    Thank You

    Thanks to everyone who has replied so far.  I am looking at the trials that MD Anderson has running and trying to figure out if anything looks like it may be for me.  I still have an aversion to Phase I trials mainly because the nature of Phase I trials is using drugs that have not been tested in humans, and I do not really do not want to be a human lab rat. The doc told me that there are a few trials that I can enter even though it's been running a while.  He said that while they are really on the front end of these trials they can tell some of the effects that have shown themselves prior to me entering the trial so I would at least have some idea of side effects. 

    I am also looking at doing a course of the "Rick Simpson Cure"  where you consume 60 grams of concentrated Marijuana oil (Rick Simpson Oil) over a 90 day period.  Since I am in a Medical Marijuana Legal state, I can get the oil from my local dispensary.  The premise of this "cure" is that taking such large amounts of the oil will make me basically sleep and eat and then sleep some more.  According to proponents of this protocal, this allows your body to gain strength and allows the body and the cannabinoids to fight cancer during extended sleep.  I don't know about this, but I am at least looking into it.  I figure that if I do it, the worst thing that can happen is that I stay high for many days and spend a good bit of money.  I know that using cannabis has helped a ton with all the side effects of chemo.  In fact, my local oncologist fussed at me when I ran out of medical marijuana after Hurricane Ida because the dispensary was closed for over a month due to no power.  I was having severe side effects from the Stivarga and he told me to go wherever there was an open dispensary to get it so that I could fight the side effects better.  Turns out he was right, when I got back on my regular 30mg daily dose, the side effects improved tremendously and almost immediatly.  In any case, I will not do this treatment unless and when the Stivarga is deemed to be not working.  At that point I will have no further conventional chemo left to try and will have to either get into a phase I trial or do the marijuana "cure"

    With all of this, my head is spinning and I really don't know what is the right path.  I will speak to my oncologist tomorrow about these options and get his input  He has been great with everything and I trust him to help me make the best decisions I can.  

    Thanks again,

    Tim

  • Trubrit
    Trubrit Member Posts: 5,562 **
    Addition to my above post

    I contacted my friend.  He had a rare form on Kidney Cancer and was diagnosed TEN years ago. They weren't sure what to do with him, so they started him straight into a trial.  That worked for about four years, and then he found the Cancer had spread to his stomach.  At that point, they told him he had about two years to live and put him on another 'sorta trial' - not sure what he means by that, but those were his words. Anyway, that was SIX years ago, and his latest scans show NO CANCER. 

    I wish this were the case for everyone, but we all know that it is not. 

    Again, I wish you luck with your decision making. 

    Tru

  • feckcancer
    feckcancer Member Posts: 163 **
    edited November 2021 #7
    Imugene

    I have been following this company who seem to be having good results so far which you may be interested in (the share market thinks so too). All the details are on their website.

    Also I am a big believer in medical MJ as a complimentary medicine but I am sure your doctors will know more about that than I do. 

    Take care & stay safe x

    Imugene (ASX: IMU)

    Clinical Trials — Imugene (ASX: IMU)

  • DanNH
    DanNH Member Posts: 167 **
    A friend/cancer survivor told

    A friend/cancer survivor told me that he viewed treatments as bridge treatments. They move you along and keep you alive long enough for the next big break. It worked for him. He believes that new treatments are coming out at an explosive rate, exponential! Read "mycancerstory.rocks". Draw your own conclusions. There is always one more thing to try. Clinical trials may be that bridge. Try an integrative oncologist and see what they have to offer that is outside of the standard of care. God bless you and good luck with whatever you decide is best for you snd your family. 

    Dan

  • NewHere
    NewHere Member Posts: 1,380 **
    edited November 2021 #9
    Hey Tim

    Sorry to hear it was not Covid shots.  My second and booster caused my CEA to rise.

    A couple of things, not sure how long you were on Lonsurf or how much it progressed.  There is wiggle room and variances in scans.  Mine took a bit to kick in.

    Second, I agree with you about Phase I studies, but for different reasons.  I am in a study now (Phase II) but it is using a cocktail of drugs that have been previously approved for other cancers.  Certain markers in my cancer indicated I may be able to respond to it.  We will see.   I have gone through FOLFOX, FOLFORI, Lonsurf, and now my second trial.  The reason I would be hesitant on a Phase I is that study may be too early.  Meaning with my situation, the objective for me is past a Phase I trial.  I need to make sure the breaks are on cancer growth. 

    As to the Stivarga, if you are handling it and it is slowing things down, you are in good shape.  When I was first diagnosed, Lonsurf was not used for CRC.   Last year it kept me going, including (read this part carefull) when it began to shrink my tumors after I was on it for 5 months.  Before then things were the usual minor ups and downs. 

     

    Go on the the NIH site to see what is available.  Also check around.  The doctors running my trial spotted a mutation that would possibly be receptive to certain other treatments, although it is not 100%  A second look at the mutation indicated it may not be high enough on the scale (Her-2).  Not every doctor knows everything, not meaning as throwing shade at a doctors but there is so much out there.  I am really lucky that the doctor I wound up with this trial is really serious about research for colon cancer.  I am sure there are others out there.  Every time I see something, he already knows about it and up on it.

    I am 7 in years in now.  No doctor has told me to worry or plan for the worst yet.  So try to stay as positive as you can.