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Thread: Colon cancer stage 4: Doctor prescribing LONSURF. Help us find alternatives, please!

  1. #1
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    Colon cancer stage 4: Doctor prescribing LONSURF. Help us find alternatives, please!

    Dear Forum,

    My amazing wife, 38, has been treated with Avastin-FOLFOXIRI for a stage 4 colon cancer with spreading to the liver and some small lymph nodes just below the kidneys, both sides.

    The onchologist is not satisfied with the progress as there still is some activity in some small tumors just below the kidney. And he is now suggesting Lonsurf. My understanding of Lonsurf is that this is a matter of buying her a few more months....

    What other options are there? I am aware that changing onchologist might be one. But beyond that, what other treatments exists? We are willing to try anything no matter how experimental, alternative, long term damaging or (as much as we can afford it) how costly it might be.

    I hope for your help and advice.

    Kind regards
    Lars
    Last edited by larsg; 06-11-2018 at 05:39 AM. Reason: Adding signature.
    My amazing wife, 38, has been diagnosed with CRC stage 4. We have 2 children, 6 and 7. We need your help, please. Our oncologist is giving up on my wife and we are now looking for any other alternative that might be out there. We are realistic about the situation and know that real options - if any - will be few. But we also want to make sure we have tried all options. Help us by sharing your advice or asking questions, please.

  2. #2
    Moderator Top User Fourlegsgood's Avatar
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    Lars,

    I am so sorry to hear about your wife.

    Some chemo treatments are indeed in the just a few extra months category but also the same drugs used in a different context can also get different people into remission with NED (no evidence of disease).

    In terms of options, my inclination would be to get second opinions or even third opinions with other oncologists. Be very wary of straying outside traditional medicine. There are a large number of sharks out there just waiting to find desperate people like you so they can sell their snake oil. I have mentioned my sister in law before on here who was convinced by relatives to try so called experimental treatments for her breast cancer but they just turned out to be more snake oil and what is more they made her very ill indeed.

    Talk to her oncologist and talk frankly about what his objective is and whether he is striving for a cure or merely to maintain a status quo. Always push for the cure route even if at first it does not seem like an option. Often avenues of treatment can open up if there is a good response to chemo.

    Also ask him (or her) about trials for new treatments. Let the oncologist know that your wife will look at those if they are an option. Make it clear to him though that you will not be chasing after snake oil.

    Nick
    Age 1/2 way to 120 plus 1. Symptom of blood in stools May 2011. Colonoscopy June 2011 confirmed rectal cancer. CT scan June 2011 showed no spread to other organs. Anterior resection July 2011 plus 50% bowel removed due to thickening observed during operation. Biopsy confirmed stage 2 in rectum only. Completed 8 cycles of precautionary capecitabine (4600mg Xeloda). Returned to horse riding 6 weeks post op, jumping 2weeks later and first competition 2 weeks after that. July 2012 - CT scan clear. June 2014 - CT scan clear. December 2014 - Colonoscopy clear. July 2017 - 6 year CT scan clear.

  3. #3
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    Thank you Nick, I agree with you, there are definetely many sharks out there and we will seek out more onchologists.

    But I am still keen to know what - if anything - has worked for others. I would never forgive myself if i didnt try.

    Anyone?

    Kind regards,
    Lars
    Last edited by larsg; 06-11-2018 at 05:39 AM. Reason: Adding signature.
    My amazing wife, 38, has been diagnosed with CRC stage 4. We have 2 children, 6 and 7. We need your help, please. Our oncologist is giving up on my wife and we are now looking for any other alternative that might be out there. We are realistic about the situation and know that real options - if any - will be few. But we also want to make sure we have tried all options. Help us by sharing your advice or asking questions, please.

  4. #4
    Super Moderator Top User Baz10's Avatar
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    Lars,
    Sorry to read your post regarding your wife’s stage IV CRC status.

    i agree with both your motivation to seek options and Nicks response Which is a factual overview.

    20 year medical history of treating advanced CRC with the exception of a limited number of “new” chemotherapy treatments has advanced yet still remains fixated to using ostensibly 30 year old chemotherapy regimes with varied efficacy results, certainly for late stage diagnosis.

    The latest advance in research leans towards immunotherapy as becoming the future gold standard pre and post surgical and or radiotherapy intervention.
    There are a substantial number of trials currently in progress as Phase I, II and stage III, with stage III results obviously being limited at this time.

    However initial clinical results have indicated a substantive positive result in blind trials although limited to few in numbers patients so far.

    The criteria for entering the trials obviously varies considerably and appears to be on a patient to patient basis.

    There is one recent widely publicised in the U.K. where the lady in her mid thirties had a life prognosis of months, yet following immunotherapy she is now showing zero cancer involvement two years later.

    I don’t throw this out as a lifeline as it is not suitable For everyone, but shows recent advances in immunotherapy can have a remarkable effect on prognosis.

    Lonsurf has also had some remarkable published benefits and if your wife’s oncologist suggests the suitability of Lonsurf, as Nick suggests you should ask direct questions as to the hopeful outcome of this treatment.

    In the discussions I suggest you ask what trials may be available for stage IV sufferers and have other options been looked into.

    Sometimes it appears that specialists need to be at times persuaded to think outside the “box” rather than stay within their comfort zone of using well known and clinically proven but ageing regimes.

    As one eminent U.K. researcher said recently
    ”Unfortunately we are still using a large hammer to break an eggshell”.

    Good luck and let us know how things develop after meeting the oncologist.

    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  5. #5
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    Hi Barry,

    Thank you so much for your advice! I know its not a lifeline and we are very realistic about the situation we are in. But it is certainly something we will explore.

    Do you by any chance know where to go in case our doctors, who are currently responsible for the treatment, say no to immunotherapy? Who are the best in the world in this field? I assume that everything can be bought for money..... (I dont care if i have to sell everything i own to gain a 1% higher chance of survival or life extension).

    And where do you go for trials?

    Thank you so much Barry.

    Any other advice is still welcome!

    Kind regards,
    Lars
    Last edited by larsg; 06-11-2018 at 05:40 AM. Reason: Adding signature.
    My amazing wife, 38, has been diagnosed with CRC stage 4. We have 2 children, 6 and 7. We need your help, please. Our oncologist is giving up on my wife and we are now looking for any other alternative that might be out there. We are realistic about the situation and know that real options - if any - will be few. But we also want to make sure we have tried all options. Help us by sharing your advice or asking questions, please.

  6. #6
    Super Moderator Top User Baz10's Avatar
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    May 2011
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    Lars,
    my initial suggestion is to approach the medical team, particularly the oncologist to explore current as well as advanced options.

    They should have the essential clinical data and results to either make direct application for trials or specialist hospitals that have a proven record of treating advanced cancers.

    Also, it depends where you reside as to be honest although I reasonably know what is happening in the U.K, other countries I am not familiar with.

    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  7. #7
    Newbie New User
    Join Date
    Jun 2018
    Posts
    4
    Thank you Barry!

    To everyone, Im still very keen to get more advice and guidance. Nick and Barry has already shared great advice (thank you both!).

    If anyone can add to the thread with more recommendations or guidance with regards to treatments - no matter the cost, side effects, location in the world, or if its from the more alternative sphere - please let me know.

    You help is highly appreciated!

    Kind regards,
    Lars
    My amazing wife, 38, has been diagnosed with CRC stage 4. We have 2 children, 6 and 7. We need your help, please. Our oncologist is giving up on my wife and we are now looking for any other alternative that might be out there. We are realistic about the situation and know that real options - if any - will be few. But we also want to make sure we have tried all options. Help us by sharing your advice or asking questions, please.

  8. #8
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Posts
    5,211
    Lars,
    I would caution against looking into “Alternative” treatments as this is a jungle inhabited by ostensibly dangerous non proven treatments with clinically unsubstantiated and in many cases widely advertised fake cure all claims.
    Most I add are purely driven by relieving people of money.

    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  9. #9
    Moderator Top User Fourlegsgood's Avatar
    Join Date
    Aug 2011
    Posts
    948
    Quote Originally Posted by Baz10 View Post
    Lars,
    I would caution against looking into “Alternative” treatments as this is a jungle inhabited by ostensibly dangerous non proven treatments with clinically unsubstantiated and in many cases widely advertised fake cure all claims.
    Most I add are purely driven by relieving people of money.

    Barry
    +1 and I repeat my post # 2.

    Nick
    Age 1/2 way to 120 plus 1. Symptom of blood in stools May 2011. Colonoscopy June 2011 confirmed rectal cancer. CT scan June 2011 showed no spread to other organs. Anterior resection July 2011 plus 50% bowel removed due to thickening observed during operation. Biopsy confirmed stage 2 in rectum only. Completed 8 cycles of precautionary capecitabine (4600mg Xeloda). Returned to horse riding 6 weeks post op, jumping 2weeks later and first competition 2 weeks after that. July 2012 - CT scan clear. June 2014 - CT scan clear. December 2014 - Colonoscopy clear. July 2017 - 6 year CT scan clear.

  10. #10
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    Lars,
    My heart goes out to you. Personally, I was diagnosed with Stage 4 Colon cancer metastasized to the liver in July 2016. My CEA markers were 84 My CEA markers dropped to 34 within 1 month & down to 3.4 in 2 months - a miracle. My protocol was as follows:
    1. God - a ton of prayer, watched a lot of TV programs about God's supernatural healing power, stayed positive at all times.
    2. Immediately after my diagnosis, I began taking a natural remedy which I had read about (Concentrated flax hull lignans) - 1 scoop per day. If you like I can send you info.
    3. Two weeks after diagnosis, I started chemo & ran through 2 cycles -about 6 months. I continued taking the flax hull lignans & added another product "Graviola Tea" which did wonders for chemo symptoms.
    By the second month after diagnosis, my CEA markers dropped to 3.4 & have remained in that range til this day. No surgery was needed. I am still on an Avastin preventive treatment every 2 weeks but feel great & am thanking God every day. My uncologist says it is remarkable.
    I can't say for sure, which of these items in my protocol did the most good; but I feel that God led me to these two natural remedies & they were instrumental in my remarkable turnaround.
    God bless. I'm here to help in any way I can.

    Rick

 

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