Long but Final Words

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rp1954
Posts: 1523
Joined: Mon Jun 13, 2011 1:13 am

Re: Long but Final Words

Postby rp1954 » Tue Apr 08, 2014 2:08 pm

Patients and families are prey to many treatment traps, both standard and alternative. Knowledge, experience and careful, unflustered reasoning are among our greatest tools. I want to thank everyone that has shared their direct experiences. ko1300cc, I am sorry for your family's pain and loss - thank you for your mom's story.

Many of the biologically based alternative treatments have small order individual effects, percentage gains, that might be best leveraged through early, long term use as add-ons in eclectic combination. Only a few unapproved treatments seem to provide pronounced, standalone, easy to see survival benefits like perioperative cimetidine and the celebrex-oral treatment pairings, both known and promoted by Life Extension for over a dozen years. However, gains like 3%+2%+4%+5%... should not be discounted either. A dozen of them become a game changer in their own right.

Last ditch efforts are understandable. They could potentially provide quality of life, some life extension, perhaps extra chances. Everyone hopes for a miracle. Poorly conceived or executed efforts overinfluenced by marketing easily turn tragic, whether standard medicine or CAM. It's the biologically based, early CAM efforts used to complement the best standard techniques that may provide the big survival and QoL benefits at lower costs.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

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singingholly
Posts: 1133
Joined: Thu Feb 27, 2014 3:37 am
Location: Northern Italy

Re: Long but Final Words

Postby singingholly » Tue Apr 08, 2014 4:43 pm

Thank you for your words. I just can give you back my tears.
Dec2011 sigm IIIst res T3N1(2/18)M0 Xelox
Oct2012 5liv.mets Dec 2012 liv.res
Jan2013 1liv.met Folfiri+avastin
Jul2013 liv.res Folfiri+/av
Feb2014 10+2lu.mets & 1abd node Folfoxiri+SBRT
Sep2014 Res rx l. BUT spot on diaph:SBRT
Dec2014 3+6lu.mets.Immuno

mackswife
Posts: 263
Joined: Fri Aug 17, 2012 7:11 pm
Location: Atlanta, Ga.

Re: Long but Final Words

Postby mackswife » Tue Apr 08, 2014 4:51 pm

I have no words that can describe how sorry I am for your loss and the pain you and your family must feel. I truly thank you for your post as I believe it will help many, and perhaps save someone's life.
Husband IIIC;
7/12 - resection; 12 rounds folfox
CT/PET scans 4/13, 9/13 - NED
CT scan 3/14 - liver/LN mets
5/2/14- failed liver resection - peri. mets.
6 rounds of iri/avastin
8/26/14 - failed liver resect/HIPEC. dse. progression
9/14 - 3/15 - progression on chemo
3/23/15 - treatment stopped; working the bucket list

Colon Girl
Posts: 76
Joined: Thu Jul 26, 2007 3:43 pm
Facebook Username: colon girl

Re: Long but Final Words

Postby Colon Girl » Tue Apr 08, 2014 5:50 pm

Thank you for sharing your story with us. By sharing your mother's journey, you will continue to help others in similar situations that are seeking guidance, information, and peace. I am so very sorry for what you, your mother and your family have endured due to this disease. I sincerely wish I could take it all away. I love that you are journaling… a very cool way to cope. Like another mentioned in a previous comment, I know your mother would be so proud of you and your sister.

Take care and keep in touch.
Krista Wilson
President
The Colon Club

ann13
Posts: 74
Joined: Sun Oct 20, 2013 12:03 pm

Re: Long but Final Words

Postby ann13 » Wed Apr 09, 2014 4:13 pm

What a story. I am so very sorry that your mom, you and your family had to go through with this. I am glad that you were able to be there with your mom when she passed. Peace and love to you.
Mom diagnosed with Stage IV CC 10/13
tumor removed and colon resectioned 10/13
Chemo started 11/13 - error relating to pump caused death two days later
became my guardian angel:)

pete43lost_at_sea
Posts: 65
Joined: Tue Mar 29, 2011 6:26 am

Re: Long but Final Words

Postby pete43lost_at_sea » Wed Apr 09, 2014 9:02 pm

Maia wrote:It makes me so upset to read about this clinic in Germany. It's not the first case I found related to it, on different boards, this past year. That they call 'immunotherapy' that, what they do (chemoembolization and Remobav), makes me angry beyond words.

I wish I could give you a hug over the web... your pain is so palpable. Don't blame yourself, your family or even your mom for this... she made her decision, she chose that treatment, she was back home with her family for her last days. You were together. All the moments you shared during your life are with you, are *you*, forever. Keep your diary, treasure the love, and live. Your mom wouldn't want nothing less for such loving son.
May you be free of suffering and the causes of suffering.


dear maia,
i had a complete response to removab and tace so you may be angry for whatever reason, i know many successes and just as many failures. i am glad it worked so well for me, all the peritoneal mets gone, all the liver and even the lung. now my remission last 3 months, but the the peritoneam has been clear 18 months with removab and tace. i just wanted to inform you that rat mouse hybrid trifunctional antibodies are a valid and proven immunotherapy. millions of lives would be saved if they were used in the states now before chemo destroys our immune system. yes the clinic is very expensive, whats criminal is that removab has existed for many years, i can personally vouche for the previous oncologist who i owe my life too, they try and deliver miracles for everyone who comes,

why removab fails i suspect is clearly the patients immune competance and the degree of epcam expression and of course tumour burden. i hope this helps, your posts on pdl1 are excellenmt, but you are really wrong about hallwang and in fact your opinion would indirectly lead to many deaths if people who could afford a course in removab were disauded by your comments. some told me to come here and explain my experience.

now its buried at csn and on my blog, its some good searching and maybe you can find it, i know of 10 people of owe there lives to removab and tace.

http://petertrayhurn.blogspot.com.au/20 ... dream.html

love,
pete

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ptfly
Posts: 392
Joined: Wed May 29, 2013 4:38 pm
Facebook Username: Paul Turley little rock, ar
Location: Little Rock, AR
Contact:

Re: Long but Final Words

Postby ptfly » Wed Apr 09, 2014 11:07 pm

Maia wrote:It makes me so upset to read about this clinic in Germany. It's not the first case I found related to it, on different boards, this past year. That they call 'immunotherapy' that, what they do (chemoembolization and Remobav), makes me angry beyond words.

I wish I could give you a hug over the web... your pain is so palpable. Don't blame yourself, your family or even your mom for this... she made her decision, she chose that treatment, she was back home with her family for her last days. You were together. All the moments you shared during your life are with you, are *you*, forever. Keep your diary, treasure the love, and live. Your mom wouldn't want nothing less for such loving son.
May you be free of suffering and the causes of suffering.


I agree. Pls live your life as your wonderful mom would want you to. I appreciate your post and wish you the best.
Husband to Tracie with stage 4 CC. Liver Mets
DX 5-10-13. C resection 5-17-13. 5/17 LN
FOLFOX+AVI 6-11 thru 9-19-13
HAI pump on 10/31/2013 :) Stopped 9/14 :(
https://www.facebook.com/paul.turley.92
Passed peacefully in my arms at home on 11/11/14

ko1300cc
Posts: 33
Joined: Fri Jun 29, 2012 11:57 am

Re: Long but Final Words

Postby ko1300cc » Thu Apr 10, 2014 10:46 am

So I wanted to keep this post as a memorial about my mother and her painful experiences during her last days of life. I wanted to share my feelings and simultaneously educate colon club members on signs and symptoms and other experiences my mother faced during those difficult times. At no point was this post meant to be an endorsement for any traditional or non-traditional medicine.
A member above me posted his two cents regarding success regarding his treatments at Hallwang Clinic. I congratulate you and envy your success at this clinic for my mother was an outlier and only saw failure in her experiences there.
My problem with this clinic is that they prey on the desperate. They capitalize on extrapolating as much funds as possible from those that are on their last straw of hope without any concern on their individual plan of care. My parents called them and the clinic said come here right away without even asking to send the documents over. I still sent the documents to the clinic anyway and of course they said they can help her with all these alternative therapies and medicines. They hit her with high doses of thyroid medication enough to nearly kill her. Hyperthermia, removab, ozone therapy (which is essentially dialysis was all done with no consideration on how her already immune-suppressed body will handle all of this. They were more concerned with tackling her and my father with fees and automatically created a debit account from their American account to obtain those funds for treatments. They ran CBC work on her every other day for no particular reason and charged thousands of Euros for it. When my mother received C-DIFF from that clinic, they were quick to blame conventional treatments in the United States. Not once did they accept the fact that perhaps she obtained that infection from their own clinic. What was more disturbing was that they told her C-DIFF infection kill off cancer cells, which is a major crock of shit. A blatant lie. Don’t get me started on their moral nature and how brilliant the clinicians at that clinic are. I wasn’t born yesterday, and I understand the nature of human behavior and the dynamics of exploiting certain behaviors to benefit financially.
If your experiences at that clinic were a success, good for you. You were one of the lucky ones. But here in the United States we don’t just give medicine to people that have stage 4 cancer unless they willing fully agree to be enrolled into a clinical trial with a moderate to sufficient amount of data on said medication.
So please keep your clinic endorsements to yourself and show some respect.
Son to 45 yr Mom Stage IV, 2 mets to Liver
Apr2012- surgery, hysterectomy, liver resections
Jun 2012- Folfox 10 w/ avastin, 8 w/ oxi
Dec 2012- Surgery abd adhesion
Mar 2013- Peritoneal Carcinomatosis
Mar 2013- Folfiri w/erbitux 7 rounds
July 2013- HIPEC

jeanette57
Posts: 1004
Joined: Sun Mar 04, 2012 11:40 am

Re: Long but Final Words

Postby jeanette57 » Thu Apr 10, 2014 12:23 pm

we feel you. I believe in alternatives (,mary jane) but would never suggest. This is for you, and people who gave you and our family some hope at the beginning. Mom is has no more pain, now is the time to grief, to remember happy times, to do a video of happy times with pictures for those days that grief is to much.

I am stage 4 - fighting but losing more of myself, so I am trying to get pictures and things together to make my own YouTube happy video. I had a friend pass that did this and it make all the family cry and smile - the happy times, the moments that only family understood by the sounds of their inhaled breath. The message for the future.

Warning - FYI in my opinion, I wait about 4-6 weeks to pour a lot of love to people who have passed. Why because at first they are overwhelmed by family and friends - food and cards, then it seems to end around week four and life goes on but that is when most of us left behind start to process this death or this journey. I then send lots of cards, food and love to help them understand = loss yes, memories yes - never forget- my friends husband said he couldn't sleep in the same bed, to many memories so suggest a smaller bed, to leave a few things of her out, and to just breath ../ his daughters sleep each weekend there for 6 months./ I think that is why he made it. now the best cancer volunteer every (say that because he gets me free food which I thank him for and bring home as I can't eat much ). :shock:
T3 N0 M0 -1-4-12 to 3-2013- NOW stage 4 terminal
mets Lungs & bone - halo on head (not to many can see unicorn horn)
chemo for life or until I quit

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Long but Final Words

Postby Maia » Thu Apr 10, 2014 2:52 pm

Peter, since all your post is addressed to me, I'll reply you, but this thread was started by ko1300cc as a memorial about her mother and also as a warning to others about a certain experience her mother, he and his whole family had; from my part, I'll try to help to keep it that way, so I'm replying you in a separate thread: viewtopic.php?f=1&t=46263

crhamilton
Posts: 11
Joined: Tue Dec 30, 2014 2:35 pm

Re: Long but Final Words

Postby crhamilton » Tue Dec 30, 2014 3:07 pm

pete43lost_at_sea wrote:
Maia wrote:It makes me so upset to read about this clinic in Germany. It's not the first case I found related to it, on different boards, this past year. That they call 'immunotherapy' that, what they do (chemoembolization and Remobav), makes me angry beyond words.

I wish I could give you a hug over the web... your pain is so palpable. Don't blame yourself, your family or even your mom for this... she made her decision, she chose that treatment, she was back home with her family for her last days. You were together. All the moments you shared during your life are with you, are *you*, forever. Keep your diary, treasure the love, and live. Your mom wouldn't want nothing less for such loving son.
May you be free of suffering and the causes of suffering.


dear maia,
i had a complete response to removab and tace so you may be angry for whatever reason, i know many successes and just as many failures. i am glad it worked so well for me, all the peritoneal mets gone, all the liver and even the lung. now my remission last 3 months, but the the peritoneam has been clear 18 months with removab and tace. i just wanted to inform you that rat mouse hybrid trifunctional antibodies are a valid and proven immunotherapy. millions of lives would be saved if they were used in the states now before chemo destroys our immune system. yes the clinic is very expensive, whats criminal is that removab has existed for many years, i can personally vouche for the previous oncologist who i owe my life too, they try and deliver miracles for everyone who comes,

why removab fails i suspect is clearly the patients immune competance and the degree of epcam expression and of course tumour burden. i hope this helps, your posts on pdl1 are excellenmt, but you are really wrong about hallwang and in fact your opinion would indirectly lead to many deaths if people who could afford a course in removab were disauded by your comments. some told me to come here and explain my experience.

now its buried at csn and on my blog, its some good searching and maybe you can find it, i know of 10 people of owe there lives to removab and tace.

http://petertrayhurn.blogspot.com.au/20 ... dream.html

love,
pete


Dear KO 1300cc - I´m sorry that I have to write this in your blog but I just feel that I have to, so that patients like me do not get too much irritated - and I´m really sorry what happened to your mother- it seems to me that many things have changed since then at Hallwang Clinic and therefore I would like to adress Pete´s and Maia´s discussion.

Dear Maia, Dear Pete,

I´m writing in this particular blog and will also provide a more detailed response in your own blog about the Hallwang Clinic since I just have been at Hallwang Clinic until December 23rd for my second time now, suffering from coolrectal cancer stage IV - highly pretreated and latest - until August 2014 on my 10th line of palliative chemo - surviving already 5 years under this course. I´m fit and just went to my oncologist who did so great in the past and asked him for any follow up treatments since my liver metastasis appeared to grow. And my oncologist told me that I have been already on everything that is currently available - "there is no treatment available anymore." Come on, I couldn´t believe it, I was then and I´m still fit. When I came to know about the Hallwang Clinic via a third party website from Grace Gawler ("Institute") - that appears to charge a hell of money for blurry medical advices without a medical MD-background - puh - I was first lost but then found also posts from happy fellow that went to the Hallwang Clinic without these third party medical travel agencies, and finally I made it and went to Hallwang to give it a try- to make my story here short and I will continue at Maia´s blog: I´m really happy that pete wrote in this blog since otherwise I would´t have gone to Hallwang, would´t have received TACE for my liver, Removab for my EpCam expressing tumor, anti-PD1 and anti-CTLA-4tto release the break on my dendritic cell primed T cells- and finally I would have not been in complete remission now - and can support and underline Pete´s point. Pete thank you for your post - The Hallwang Clinic did just amazing in my case - my physicians at home are working now together with Dr. Nolting, who is indeed the most knowledgeable physician about integrative oncology and who I thank for this terrific year 2014.


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