Looking on lung mets options-need help!

Butt
Butt Member Posts: 352 Member
edited May 2019 in Colorectal Cancer #1

i have stage 4 colon cancer that eventually wend into lungs. Dozens of small mets on both lobs. Doing chemo , the second line, there is a very minor growth on 4 of them let s say increase is about 1 mm. Vats surgery, SBRT is not an option because they need a much smaller number. Contacted Dr.Drews in Coswig hospital in Germany and he told me upon looking on my scan that there are tooooo many and he can’t take me because he is concerned he will miss some. I hoped that chemo will start erasing those mets because they are tiny End eventually I would have VATS or radiation. Yes, I had 2 consultations from MD Anderson in Houston.I hate chemo for life and I am already in a zone when it can stop working any moment now. I am looking for other options, doctors, cancer centers who successfully assisted with the same issue. Need help and your knowledge!!!!!!!!!! Butt.

Comments

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited May 2019 #2
    I have small to bigger ones

    I have small to bigger ones cattered through both lungs. The maintenance immunotherapy keeps them at bay. All except one. The scariest one as it's closest to my heart and is pretty big. It's also just on the inside of the opening to that lung. I don't know if this is helpful at all.

    Jan

  • zx10guy
    zx10guy Member Posts: 273 Member
    #3
    Sorry I can't help you

    Sorry I can't help you personally here.  But a Facebook group called Colontown has numerous members with all different variations of this wretched disease.  There are also quite a few members who are very knowledgeable about clinical trials and treatment alternatives.  If you want to join Colontown, let me know.  It's a private group and there is a procedure to get membership.

  • Butt
    Butt Member Posts: 352 Member
    #4
    yes, I want to join colon club....

    i will appreciate the guidance.....

  • zx10guy
    zx10guy Member Posts: 273 Member
    #5
    Butt said:

    yes, I want to join colon club....

    i will appreciate the guidance.....

    Go here and fill out the

    Go here and fill out the section for patients:

    https://colontown.org/colontown-intake-form/

    You need to have a Facebook account.

  • BGNor
    BGNor Member Posts: 32 Member
    #6
    Same here

    Hi Butt. I'm sorry that you have found yourself in this situation. I'm pretty much in the same place. Got 10 mets identified scattered over both lungs. I did get a wait and see reply from Coswig, so I haven't lost all hope for a possible surgical solution, but it's not promising. The other possible solution could be immunotherapy. PD-1 check point inhibitor. That will require that you either are MSI high or that you have sufficiently high tumor mutation burden(TMB).

    Foundation One and MSK is the only 2 that does this TMB analysis, as far as I known. For that they need tissue samples of the tumor. The analysis cost about 6000 USD I think and only a limited number of people have a sufficiently high TMB. Cost of immunotherapy may also be high, depending how your medical coverage. 

    That's the best option  I have found so far.

    Best wishes,  Bjorn

  • annie4145
    annie4145 Member Posts: 218 Member
    #7
    Some clinical trials are good

    Some clinical trials are good and some are bad.  Make sure you check out clinicaltrials.gov to see if anything could work for you.  I also did research on google scholar to see what the academic journals said about my type of cancer.

  • Butt
    Butt Member Posts: 352 Member
    #8

    My genome was done right away and the insurance paid for it. I do check clinical trails but do not see anything promising. You will be surprised how many never kick in in phase 2. There is one about T cells but at this point I am not eligible due to the size of the mets. If anyone uses a clinical trail for lung mets I will appreciate a number and I am not interested in phase 2. Mr. Norway, for how long have you been having lung mets? Butt.

  • BGNor
    BGNor Member Posts: 32 Member
    #9
    Butt said:

    My genome was done right away and the insurance paid for it. I do check clinical trails but do not see anything promising. You will be surprised how many never kick in in phase 2. There is one about T cells but at this point I am not eligible due to the size of the mets. If anyone uses a clinical trail for lung mets I will appreciate a number and I am not interested in phase 2. Mr. Norway, for how long have you been having lung mets? Butt.

    Hi Butt.

    Hi Butt.

    The lung Mets were discovered on a routine CT scan in Jan 18.

    Some increase in size made it necessary to start chemo in Jan this year. FOLFIRI+Avastin. Completed 10 rounds now, new CT scan yesterday. Getting the results of that on June 20. So some excitement over the next weeks. I'm checking out another laser surgery clinic in Germany as well, University of Freiburg, Dr.Bernward Passlick. Haven't been in contact yet, but think I will. Also the NGS/TMB is on the list to check out. Sorry to hear you are struggling. Best wishes from me. 

    Bjorn 

  • abita
    abita Member Posts: 1,152 Member
    #10
    Butt said:

    My genome was done right away and the insurance paid for it. I do check clinical trails but do not see anything promising. You will be surprised how many never kick in in phase 2. There is one about T cells but at this point I am not eligible due to the size of the mets. If anyone uses a clinical trail for lung mets I will appreciate a number and I am not interested in phase 2. Mr. Norway, for how long have you been having lung mets? Butt.

    Why are you not interested in

    Why are you not interested in phase 2? Which phase do you want?

  • feckcancer
    feckcancer Member Posts: 189 Member
    #11
     

     

    from the other side of the world sorry but you could try getting in touch and getting some advice??????

    https://gicancer.org.au/community-clinical-trials/

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

    https://www.keyvisathailand.com/best-cancer-hospitals-in-bangkok/

  • Butt
    Butt Member Posts: 352 Member
    #12

    I do appreciate everyone feedback and thank you. I would not mind travelling  to another country if there was something good for me. My insurance is world wide. I am also European with a dual citizenship. Clinical trail databasis are good in the us and of course you can find international trails but I don t see anything that will work for this specific situation. Yes, there are alternative cancer treatments many in Mexico that caters mostly to Americans and Canadians. I heard about some in Germany but of course there must be other countries in the above post Thailand. I have been there and it is a very nice country. Many people go there when nothing can be done in let s say US. They get all those vitamin C infusions, herbs and pardon shortly after that going to pass.They advertise those centers nicely. A few people who had a surgery and chemo with let s say stage 2 cancer were cured with traditional treatments but if they have money they go there and attribute their level of success because they were taking 8 different herbs that they believe fixed their cancer. My close personal friend was diagnosed  with stage 3 cervical one years ago. She had a surgery and after the first chemo she had side effects. No surprise. Her hubby suggested only organic foods, no meat, herbs and juicing. She was getting worst. They went to Mexico for a magic cure. After 3 months of herbs and massages they rushed her across the boarder back to the US to the nearest hospital. She died 4 days later. She was 32. I heard a few stories in my local cancer center when people go thru alternative route and they die soon. There is an article on google a research one that if I remember the numbers correctly 81% stage 4 colon cancer patients believe that chemo can cure them and 87% of stage 4 lung cancer patients believe chemo can cure them. A separate research article indicates that 4 out 10 people in the US believe that cancer can be cured thru herbs, yoga, meditation and other similar activities. Oh, well.............

  • Butt
    Butt Member Posts: 352 Member
    #13

    Double post. Sorry.

  • Butt
    Butt Member Posts: 352 Member
    #14
    Part 2

    I was friendly with one of my Neigbours who eventually moved to another state. We did stay in touch a I Visited her once. She was a licensed therapist. She was older and passed a couple years ago. I remember I asked her during her visit what issues her clients usually gad. She talked about it extensively. One category is deeply surprised me and it has nothing to do with cancer. She said she had an extensive group of clients and done were well educated who simply were doing very strange things. I don t remember all those stories.  A man if respectful age was not happy with his financial portfolio. He got some magic send from a man in Peru and was shaking it over his paper financial statements. A woman in her early sixties realized that she has a very poor financial position in regard of retirement savings  and was leaving in some public places one dollar bills with a note be blessed because she believed that she would be blessed wit a lot of money. A young attractive woman wanted to get married and have a baby. Every morning before she went to work she was sitting for at least 20 min with her legs spread visualising some biological material entering her vagina. The last girl eventually met a guy, got married and had a baby but was convinced it happened because she was doing it. I don t remember all those stories and outcomes my friend told me. But what I do remember is that she comminicated to me that people believed in something, were performing ghise questionable activities And if they had a success with their situation they attributed it to those activities. If there were no success in something they believed to and invested themself. They would realize it sooner or later and from there a broad spectrum of psychological disorders including suicide attempts that she had to work on . Butt.

  • feckcancer
    feckcancer Member Posts: 189 Member
    #15
    Butt said:

    I do appreciate everyone feedback and thank you. I would not mind travelling  to another country if there was something good for me. My insurance is world wide. I am also European with a dual citizenship. Clinical trail databasis are good in the us and of course you can find international trails but I don t see anything that will work for this specific situation. Yes, there are alternative cancer treatments many in Mexico that caters mostly to Americans and Canadians. I heard about some in Germany but of course there must be other countries in the above post Thailand. I have been there and it is a very nice country. Many people go there when nothing can be done in let s say US. They get all those vitamin C infusions, herbs and pardon shortly after that going to pass.They advertise those centers nicely. A few people who had a surgery and chemo with let s say stage 2 cancer were cured with traditional treatments but if they have money they go there and attribute their level of success because they were taking 8 different herbs that they believe fixed their cancer. My close personal friend was diagnosed  with stage 3 cervical one years ago. She had a surgery and after the first chemo she had side effects. No surprise. Her hubby suggested only organic foods, no meat, herbs and juicing. She was getting worst. They went to Mexico for a magic cure. After 3 months of herbs and massages they rushed her across the boarder back to the US to the nearest hospital. She died 4 days later. She was 32. I heard a few stories in my local cancer center when people go thru alternative route and they die soon. There is an article on google a research one that if I remember the numbers correctly 81% stage 4 colon cancer patients believe that chemo can cure them and 87% of stage 4 lung cancer patients believe chemo can cure them. A separate research article indicates that 4 out 10 people in the US believe that cancer can be cured thru herbs, yoga, meditation and other similar activities. Oh, well.............

    put in the thai link as

    put in the thai link as Thailand is great country with a good reputation for safe 'medical/cosmetic tourism'. good if you are in a country where some medical/cosmetic procedures cost a lot of money or aren't available you can go there and get 1st world care at less cost.  should have added this to my post when i wrote it but was feeling lazy sorry, Cool didn't mean to say that alternative medical care is the way to go ...always always always do what your doctor says and ask them before trying anything new...

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