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Butt is venting---need feedback

Butt's picture
Butt
Posts: 299
Joined: May 2018

 

Butt is venting......... I will apreciate a feedback and objective critique on where I am going off and hope for some good suggestions that will specifically assist. 

 

I got diagnosed with stage 4 colon cancer in Fall 2017. I had some chemo, radiation  and surgeries and last summer was able to enter a brief remission. It gave me  a lot of hope….. In November things showed up on my lungs when I basically had multiple mets on both lobs. SBRT and VATS surgery wasn’t an option and I was put on Folfiri with Avastin. I obviously was very upset with another round of chemo. My oncologist is good. I saw another one locally in a big cancer center who basically said the same thing chemo for life. I eventually went to MD Anderson and heard the same story. Too many small mets and all we have is chemo. I contacted Dr. Drewes in Germany but was not a candidate for the surgery.

 

 

 

MD Anderson told me that they have a T cell trail that I am not qualified for at the moment and from what I read only about 30% responded to treatment and their mets have become stable for an average of 4 months and after that started to grow. Not so good results as you can seen. My research failed to produce any specific options that I can utilize.

 

 

 

I saw a shrink and all he was able to tell me that I need to believe that I would be cured and he can demonstrate his empathy but it is all he can do. I left his office with a major headache. I saw another shrink that one came across as rude and arrogant. Told me that my life never will be the same, I need to suck it in and he is not a magician who can cure my cancer.I walked out and glad I did. Now, we are talking about professional people who have a proper level of education and work experience.

 

 

 

I basically started to explore different venues from different segments on how I could help with my situation.

 

 

 

I posted on another website related to colon cancer a request that if someone used some spiritual healers ( that I believe do exists but not sure how to find them and of course I don’t want a scam artist) and if so what was done and what is a contact info. I started to get vague responses. Ladies were stepping forward and telling me about the fact that they do yoga, meditations, reiki .It is not what I asked about. The feel more relaxed. One said she used a healer but wasn’t able to provide any further info.

 

The last drop was non-traditional medicine guy, who is Chinese and has some herbs and etc. That one promptly that I have colon cancer because my food habits. He never knew my food habits and I would say I have been in top 10% of people on this country related to healthy food habits. He said that even if a woman has an ovarian cancer because it is in abdominal area it is because her food was bad. He told me that my immune system was very weak and that is why I had cancer. I never had any issue with immune system but did had a small cold 6 years ago. According to him, it happened because my immune system was significantly impaired. He said fresh fruits and veggies are not good for people because they can destroy thei digestive system.He advised me to cook some special meal. I told him that  when people on chemo they don’t have energy to cook those advised meals. He said that it doesn’t make sense and I need to stop being lazy.

 

 

 

I don’t hear a lot about carrot, juice, herbal supplements or alkaine water.

 

 

 

I am looking for experts in their area who will be able to help me with my specific situation from different angels.  However, I profoundly keep hitting my head against the brick wall.

 

Butt.

 

 

 

Slow-runner
Posts: 51
Joined: Oct 2017

Hi, my husband is also stage 4, Mets to liver, lungs and peritoneum. He was in a clinical trial to address the lung Mets (immunotherapy trial) but failed out as his lung mets grew.  He recently hit a very rough time due to a bowel abscess and obstruction.  It was at that point that I went searching for alternate therapies. Best I could come up with was acupuncture which he is now doing weekly and am looking into cannibis oils. Buck and I accept the fact that he will be on chemo of some type for life, and fortunately, he seems to tolerate whatever  meds he has been taking. I am not sure what you are looking for in a spiritual healer. Do you need help accepting the fact that this disease is life long? Buck had trouble with that.  He kept associating it with a broken arm instead of a condition like diabetes.  No doubt it does suck to have this diagnosis, but he is thankful that it happened to him and not one of our kids, that it happened now, he is 63, and not when the kids were little, and that it has given us time to get our affairs in order, unlike some who leave loved ones suddenly without warning. I hope you find what you need to help you continue your fight because I do believe that science is close to an answer. I also believe that a person’s positive outlook and determination to succeed are key components in winning this battle.  Mary

Slow-runner
Posts: 51
Joined: Oct 2017

Hi, my husband is also stage 4, Mets to liver, lungs and peritoneum. He was in a clinical trial to address the lung Mets (immunotherapy trial) but failed out as his lung mets grew.  He recently hit a very rough time due to a bowel abscess and obstruction.  It was at that point that I went searching for alternate therapies. Best I could come up with was acupuncture which he is now doing weekly and am looking into cannibis oils. Buck and I accept the fact that he will be on chemo of some type for life, and fortunately, he seems to tolerate whatever  meds he has been taking. I am not sure what you are looking for in a spiritual healer. Do you need help accepting the fact that this disease is life long? Buck had trouble with that.  He kept associating it with a broken arm instead of a condition like diabetes.  No doubt it does suck to have this diagnosis, but he is thankful that it happened to him and not one of our kids, that it happened now, he is 63, and not when the kids were little, and that it has given us time to get our affairs in order, unlike some who leave loved ones suddenly without warning. I hope you find what you need to help you continue your fight because I do believe that science is close to an answer. I also believe that a person’s positive outlook and determination to succeed are key components in winning this battle.  Mary

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

I think I’m in pretty much the same situation as you. I found a great new Dr that is optimistic and very intelligent. She is Starting me on 5 FU, Leucovorin and Irinotecan Weds. I have the lung and liver Mets. Not a candidate for surgery or immune therapy. She has suggested Hospice twice, even had them call me. Don’t feel ready for that but if chemo makes me too sick I’m stopping it. Want to take another bucket list trip and don’t want to lose all my hair. 

So I truly do feel your pain. My friend from here sent me link to a treatment center in Thailand but it sounds like a major operation to go that far away and could be expensive. However, it sounds wonderful! They use no burning, cutting or toxic chemicals. I have no idea what they do. It sounded intriguing, I will be glad to send you the link if you’re interested. I was going to try a large teaching hospital as a last ditch effort...Duke University, but not sure now. I know lots of folks here seem positive about MSK. 

These are just my thoughts, I hope you are able to figure out your next move! 

Best of luck to you, 

Karen

abita's picture
abita
Posts: 608
Joined: Dec 2017

Think of it as not a candidate for immunotherapy "now". They come up with trials every day. I don't understand why they are suggesting hospice to you at this point. I told my doctor my plan is to hold on long enough for them to find a cure for me.

I too don't want to lose all my hair. I lost 2 thirds of my hair ( I had a lot of hair) the first year and a half. The hair I lost on folfox has already started growing back and is about 3 or 4 inches long. I did realize that I spent more time asking about the rash side effect of one of my new drugs than the more life threatening ones. I don't think we are unique. Because they gave me an anitbiotic to be proactive to miniize the rash. I am told they even have a doctor just for shin issues on staff. 

You and I are in same boat. I have liver mets, which responded to folfox, but had lung mets appear that did not, so on to a new treatment. I didn't get into a trial. But the nurse told me to keep positive, that new trials come up all the time, and I can try for those. 

My thoughts is once I get these mets under control, I can take those vacations. Oncologists understand the need for having a good life too, so will work around these with treatment plans.

I am not saying it doesn't suck. My hairdresser keeps saying how great my hair is growing back and is all positive, but I just see that my hair isn't as beautiful as it once was. I am pretty sure if I get the rash bad, I won't be on this drug for long :) I was so tired last night, but I still managed to get the energy to slather my expensive face cream all over my face to opefully stave off disaster.

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

Basically if there was an expert out there for this disease, it would be fantastic news for all, but none have shown up on the radar yet.  There have been some folks on this site who have gone to extremes in their search...time and money.  Unfortunately, none were successful.

The hope is that if current options can keep you stable, that new meds will come along which offer more.

In looking for professionals to help with emotional issues, how about asking your onc to recommend one...someone who specifically deals with cancer patients or others dealing with "terminal" disease.  What we all need is how to cope with life while we wait for the cure and how to maintain the hope that it is in time for us.

I know you were looking for more than this and I am so very sorry that I don't have that for you.

Hugs,

Marie who loves kitties

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I'm sorry about your frustration, Butt. If you're on here to vent then you know you're in the right place because we all have the same feelings and frustrations. When you mentioned the naturopath/CTM guy and he said it was your immune system that's a huge red flag that he doesn't know what he's talking about. Our bodies don't recognise cancer as soemthing to be fought and doesn't even try so the best immune system in the wold isn't going to fight it. The immunotherapies make the body 'see' the cancer and tell it to fight it, that's how they work.

If you'd like to talk to someone maybe your cancer center can suggest someone. Our center has people on staff for that. They'll even talk to us over the phone. And they're specific to certain cancers. Any 'professional' that would blow you off is not very professional.

I wish there was something other than the traditional treatments that would help but from what I can see there just isn't. Like you, I will be on maintenance chemo for life and just try to keep it at bay. It sucks. There are things that can help you feel better but fight the cancer? Not as far as I can see.

Jan 

Twinzma
Posts: 210
Joined: Jan 2018

Okay let me be frank, I think it's a load of garbage! The guy that has started this wave in the states, is my dear friends brother. Let me tell you this has been none the less the most awkward thing in our friendship! His wife's mother is on it and is a "miracle" she was told she would be dead months ago from pancreatic cancer and is still living. I am sorry but the only reason why she is still alive is that the statistics they go by are not accurate, no one has any idea when a patient will or will not expire and it's just not her time yet! Since she declined traditional medicine, she has not had a single scan either to show if it's working.

Please Butt, I implore you not to slip down that slippery slope of trying these alternative treatments in lieu of treatments that have had real studies, real results and are approved by the FDA. These supplements and alternative medicines are not regulated and there for you have no idea whatsoever what you are putting into your body! If you choose to do it in conjunction with modern medicine, be sure you let your oncologist know. 

Now about the spiritual healer. I think that it may be good for you to see one, not that I believe that they have a cure either, but to help bring you inner peace and much needed stress relief. You have the weight of the world on your shoulders right now, and have been through so much! You live in the right state for it too! Casedega in Central Florida would be the place to head and a simple google search on the town should lead you to find a reputable person to see. I emailed a woman I knew that was a healer, but it was bounced back unfortunately. 

As far as the idiot doctors you have seen. I am proud of you for having put up with it and not having kicked your boot into one of their behinds! I am so frustrated with the way that some healthcare professionals treat there patients and I am seeing it more and more. I am in several support groups and let me tell you it is a disgrace what these pompous arrogant SOB's are doing! I actually told a hospitalist off recently for the way she treated me and when I was done with her I went to her boss, the hospital administrator and even filed a complaint with the state! Don't let them get to you, don't let them inside your head. I realize some are distancing themselves from patients for their own sanity, but really some are just plain old jerks!

You have to hold your faith, I know it's easy for me to say because I am not in your shoes, but maybe Chemo for life may not be for life....maybe tomorrow or next week or next month a new therapy will be found. Look at the cancer vaccine and how successful that was in mice it's very promising indeed! Hang in there Love, you will find your answers! Hugs!!!!! 

Butt's picture
Butt
Posts: 299
Joined: May 2018

 

Thank you for all your responses and they are much appreciated!

 

Let me attempt to clarify a few things……..

 

When I refer to an energy healer I refer to someone who can do an energy work and improve your health matter in this case we are talking about cancer. I used one person who retired who about 8 years ago did an energy work on me because I wanted to lost those extra 30 pounds. Immediately I was able to eat less and I actually never was a heavy eater, the desire to exercise came to suddenly very naturally and I lost exactly what I wanted  over 6 months.

 

I do believe there are a few people out there. I live in the area where we have quite a few wealthy people and as a result we do not have a lack of spas, massage places, psychics, taro card readers, meditation centers, yoga facilities reiki and other related activities. It is clearly in high demand. But spiritual healer is different. I am looking for word of a mouth referral because I don’t want to end with a scam artist. I do believe many people, mostly women, later in life develop spiritual hobbies because now kids are away from home and a hubby makes good money, so they do some readings, take some classes on energy work and now believe they can do it all. In reality I believe it may take a very small percent of people who indeed have some internal gift to do it. I am basically looking for referrals.

 

My oncologist told me that we do not have any good shrinks in the area who know how to work with cancer patients. He heard a lot of complains from his patients on those shrinks. I am sure they can help with a divorce and some other issue but I guess cancer is not their comfortable area.

 

 

 

Yes, there is a bunch of clinical trails going on. I knew someone who used to work in clinical trails and she told me that only 5% of meds they test get approved, of course they are not only cancer meds. They start from phase one and if you look on them there is a rather small percent moved to phase two, not to mention phase three. They are falling out of the race. The 1st one is to look if people develop major side effects. We had a trail for immunotherapy in Moffitt Cancer Center for MSS people. They started having heart attacts and strokes and of course the trail was stopped. The 2nd one looks on determination of the correct dose. The 3 rd one looks one weather it is more effective than the current standard approved care. Cery small percent makes to stage 3! Many of those trails has nothing to do with your specific condition. They work on cancer related things but no necessarily a cure or PFS survival. They can test a nausea medication for people who receive chemo.

 

 

 

My oncologist told me that he was disappointed with ANCO conference results I regard of colon cancer because during the last year they hardly made any progress. I read those abstract because I have an access to a database but I couldn ‘t see anything promising. Those phases take long time. It is not that unusual to investigate one phase for 1.5 or 2 years.

 

Clock is ticking. I simply don’t see anything promising cooking in the kitchen that we available for us stage 4 patients any time soon……..My oncologist told me they need to develop immunotherapy for MSS but nothing promising in the cards.

 

 

 

I already don’t have a good quality of life because of chemo. And unfortunately I anticipate that later one it would get even worst and there is not much they can do. I personally knew people when they couldn’t take under control a pain of cancer patients at the end of life despite a variety of meds they had.  Period.

 

It is a statement of obvious that my life is going downhill and as you understand later on it will get much worst and then you die. Many people will say he went on heaven or he is in a better place but “The gate to Heaven is narrow”.

 

As I said, clock is ticking and that is why I have been aggressively exploring a bunch of options and was ready to think outside of box.

 

 

 

The above are my thoughts. I will appreciate the further input.

 

 Butt.

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I'm sorry that there isn't anything anyone can offer that will help. Being fit helps, taking vitamin D helps, things like that, but they're really just helping you feel better and have no effect on the cancer itself. I think I feel a bit like you do. Most of the people I know have or have had breast cancer. Some people do die of it but it seems like it's usually a pretty positive outcome. I go to a cancer support group here in town and most of the women are in that category. Nobody is as sick as I am or at the stage that I am. It's helpful to go but also kind of annoying. When you see pink ribbons everywhere and nobody seems to care about other cancers, I get really sick of it. A friend sent me a tshirt with a saying on it and a pink ribbon in the background and I don't wear it. From the sound of things breast cancer would have been preferable.

Jan

Diane_K's picture
Diane_K
Posts: 49
Joined: Jan 2019

Butt,

I used the Block Center, Integrative Cancer Treatment. 

http://blockmd.com/

https://www.amazon.com/s?k=dr+keith+block&hvadid=77859218653008&hvbmt=be&hvdev=c&hvqmt=e&tag=mh0b-20&ref=pd_sl_7mso5q0mlt_e

He encourages continued cancer treatment with diet, supplements and exercise changes.  He works with oncologists at his center and a group of researchers to find the latest studies on integrative treatments.  He believes we can slow or stop the growth of cancer with these integrated approaches, and possibly live with dormant cancer in our bodies and in some cases cure our cancer.

I have stage 4 colon cancer which spread to my liver and both my lungs.  The tumors in my liver and lungs were small and limited so they were able to surgically remove them.  Cancer did not recur after my surgeries and I am now 2.5 years out from my last surgery and 2 years off of chemo.

Best wishes,

Diane

myAZmountain
Posts: 258
Joined: Apr 2018

Thanks so much for posting that Diane, I have thought that if my lung mets get growing or spreading i would go to his center I like the way he combines therapies and is open to non traditional treatments. Did your insurance cover the costs? 

Diane_K's picture
Diane_K
Posts: 49
Joined: Jan 2019

Unfortunately my insurance did not cover the cost.  I actually didn't go to his center.  I sent him my medical records and then had three phone consultations. He then gave me a plan for diet, exercise, supplements and stress reduction.  I think it would be more beneficial to visit his center, and if my cancer returns I plan on going out to meet with him.

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