It’s taken me a long time, but I’m becoming an official hippie

abrub
abrub Member Posts: 2,174 Member
in Colorectal Cancer #1

We just spent 3 rough days in NYC at Sloan Kettering, where the original 2 appointments over 2 days became about 10 appointments over 3 days, as we added MRIs, more CT scans, labs, a myelogram and a radiation oncology “fitting/simulation.”

 

The cancer has metastasized to my spine and definitely in my lungs as well.  I’m being set up for a single blast of radiation to obliterate the spot on my spine before it impacts my spinal cord.  I’ll also be going back on chemo to attack the lung mets.  They were able to get me right in with the neurologic radiation specialist right away, and all was set up for my stereo-tactic radiation blast on July 7.  Hippie part one:  I now have 5 tats.

 

Hippie part 2:  as we now know that my ongoing back pain is due to cancer, and not “sleeping in a funny position” we are going to set me up for medical marijuana, as I can’t do narcotics.  Note:  I’m an mj virgin!  I’ve never tried it in any form!

 

 

Chemo will start the week after radiation, and will be bi-weekly irinetocan and avastin; no 48-hour pump (no 5FU.)

Overall, my news sucks.

Alice

Comments

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    edited June 2021 #2
    Welcome to the world of the Hippie

    I really hope that the MJ works well, for you.  It is the best bet, when the narcos aren't an option - or even if they are. 

    I am sorry to hear about the spread, and hope that the radiation blast takes care of the spine met, and the chemo takes care of the liver. 

    Who would have guessed how strong we can all be, when faced with no other option - well, one other option, which is a road we are not ready to follow. 

    I will be thinking of you. 

    Tru

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    edited June 2021 #3
    Sorry Alice, that does sound

    Sorry Alice, that does sound like a rough go-round, and a lot of adjustments. I recall Cindy's experience with the stereo-tatic procedure went smoothly enough, and the same chemo regime wasn't particularly hard for her to deal with, I hope your responses are as good. I'm an old hippie when it comes to stuff like pot/MM and it was fun back when. In eventually learning to leave it behind, I learned to hate how it made me feel. Now that I'm at the point of needing a good substitute for daily pain meds, I wish it was an option again, but I just can't get comfortable with even the smallest dose, in any form like edibles and such. Ah well, I hope it serves your needs and brings some comfort to you................................................Dave

  • NewHere
    NewHere Member Posts: 1,429 Member
    #4
    Sorry To Hear This Alice

    Sorry to hear about all of this.  I am in the same place, with multiple mets in lungs and spine since late 2017.  Keep on doing what you are doing - exercise and the rest.  All my thoughts are with you.  If you have any questions or I can help in anyway, please let me know.  (I had three radiation treatments on one of my tumors back in 2018 and may have one on my lung depending on drug trial and how fast it works, if it does.  Also got the medical marijuana card again.  Did not use it the first time a couple of years ago, but am using it now, plus CBD gummies that no card needed.)

  • abrub
    abrub Member Posts: 2,174 Member
    edited June 2021 #5
    NewHere said:

    Sorry To Hear This Alice

    Sorry to hear about all of this.  I am in the same place, with multiple mets in lungs and spine since late 2017.  Keep on doing what you are doing - exercise and the rest.  All my thoughts are with you.  If you have any questions or I can help in anyway, please let me know.  (I had three radiation treatments on one of my tumors back in 2018 and may have one on my lung depending on drug trial and how fast it works, if it does.  Also got the medical marijuana card again.  Did not use it the first time a couple of years ago, but am using it now, plus CBD gummies that no card needed.)

    Did you have IGRT?

    My radiation onc (neuro radiation) is Dr. Schmitt.  I understand that the procedure I'm having was developed by that team at MSK, and is not available at all med centers, because it is such high-dose single session radiation.  Radiation in next week; then chemo.  Wish me luck.

    Alice

  • NewHere
    NewHere Member Posts: 1,429 Member
    #6
    abrub said:

    Did you have IGRT?

    My radiation onc (neuro radiation) is Dr. Schmitt.  I understand that the procedure I'm having was developed by that team at MSK, and is not available at all med centers, because it is such high-dose single session radiation.  Radiation in next week; then chemo.  Wish me luck.

    Alice

    Don't Think It Was IGRT

    It was a series of 3 treatments over a week - small targeted.  Stereotatic Radioactive, not sure if part of IGRT.   

    All of my thoughts and best wishes are with you - and I wish you all the luck in the world.  Perhaps we can meet up when you are down at MSK.

  • DanNH
    DanNH Member Posts: 186 Member
    edited June 2021 #7
    Another MJ Virgin

    We tried gummies. They are high in sugar and spiked my wife's glucose. That was a no go. No need to feed the cancer sugar! We tried Rick Simpson's Oil. Highly consentrated and full spectrum. She had what she described as "Roger Rabbit Toon Town Dreams" with the beginner's recommended dose. Infused seltzer water, on the other hand, was the charm. It smells wonderful! She says it tastes awful. She adds some lime juice and stevia or munk fruit and it is OK. It helps with nausea and appetite. It helps her sleep. Neither of us had ever tried it before. Being teens in the 70s it's a little hard to believe. I have still never tried it. It brings comfort to a Stage 4 CRC patient. It is legal in one of our states. That's good enough in my book. But for me, I will stick with Jameson!

  • abrub
    abrub Member Posts: 2,174 Member
    edited June 2021 #8
    NewHere said:

    Don't Think It Was IGRT

    It was a series of 3 treatments over a week - small targeted.  Stereotatic Radioactive, not sure if part of IGRT.   

    All of my thoughts and best wishes are with you - and I wish you all the luck in the world.  Perhaps we can meet up when you are down at MSK.

    sounds like what I'm getting

    They discussed 3 treatments over a week, but decided with my presentation,  one super session was best. It's the stereotactic radiation treatment.

  • NewHere
    NewHere Member Posts: 1,429 Member
    edited July 2021 #9
    Check With Doctors on MJ

    It can cause issues with chemo.  On my last three chemos I was warned to stay away from CBD for various reasons.  But not THC.  Go figure.  Crazy.  (Alice and I both are at MSK, and it was the Intergrative Medicine specialist doctor there that went through it.  But for different reasons when discussed based on the chemo.  Interesting stuff.)  This doctor also recommended that I get a medical marijuana card.  So it is not like they are anti-MJ. It is that on same things CBD, THC or none may be the best option when mixing with the chemo.

  • feckcancer
    feckcancer Member Posts: 189 Member
    #10
    rewritten post

    Alice, wishing you huge amounts of Good luck & healing thoughts xx

    i got a slap on the wrist and the removal of my last post. ooooops.never mind. Cool 

    so, if you are legally medically able to you may want to look into legal Medical CBN which is different from legal medical cbd or legal medical full spectrum MJ.

    And always ask you doctors before trying anything new as NewHere  said. He is correct.

    lots of interesting helpful info out there in internetland 

     

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member
    edited July 2021 #11
    The song "Born To Be Wild"

    The song "Born To Be Wild" comes to mind.

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