Now is the time to use latest research to develop real cancer treatment.

Checo
  • By Checo · January 14, 2013 at 12:47 am · 16 replies
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I have been recently diagnosed with IBC, stage 3B, only one side was affected. I have started my AC portion of cemo therapy, just completed 1 cycle. Now, I'me not sure how I'll handle the rest of it?, I'll just take it one step at a time.

I heard about some research that can be used to design treatments that can optimally attack the patient specific tumors--based on genetic make up--identified from testing on samples extracted from the patient cancerous locations. This make sense to me-- cancer is normally initiated through mutated genes or default in switching mechanism, and developing drugs to target the cancer instead of the healthy cells as well, would be the only option for less painful treatment for cancer. Once treatment is planned, bio-markers from the patient need to be monitored in real time, to confirm the expected responses and destruction of the tumors in the real patient environment. I'm very optimistic, and hopefully a true treatment customized for each patient will become available real soon.
I understand that this is currently in research, but I can't understand why people working this research, through FDA compliance, can't work with real patients at each patient level, instead of just following the current ways - through initiating clinical trials and come up by statistical figures to approve treatments or drugs across relatively diverse pool of volunteers. For me, I don't like to be just a statistical numer--ginny peg, to prove some one's research point, related to a narrow scope or time for treatment. I would like to have the flexibility to have a knowledgeable researcher track my responses and tune the treatment to my own specific issues as they arise.
Unfortunately, current FDA policy for drug certification, doesn't address specific needs for each patient, Instead rules for approval of new treatments are based on demonstrating some statistics, regardless of variations among all participants involved in clinical trials.

I strongly believe there are enough research done that way, and now is the time to put this research for use, and transition into patient-integrated environment, that focuses on treatments for each patient, and tune treatment based on each patient's response. I'm hopeful this can get us more closer into real treatments for cancer.

I was wondering if any one have gone through this path, or even welling to work with me the details to allow for true solutions for cancer treatment, and work the necessary governmental policies to make this happen.

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16 replies   

langley10101

I am from Canada, I have the same concerns. I felt like just another 'heffer' being corralled into 'the box'. But I made my own attempt to get out of the box. I stepped away from the cancer agency and saw a community onc instead.... I had chemosensitivity done, I researched day and night, I changed my eating and excersise, I got my own pet scan (rarely given in Canada), This all took 4 months as my family nervously watched me refuse conventional treatment for that time. They were sure I would have cancer throughout my body by the time I accepted treatment. But everything I did was worth it. It was something I as a person had to do. I had to have some control to have more confidence in the treatment offered as I felt the treatment offered was only one out of 5 'Wendy's Combos' and I was not satisfied with that. How could I crap shoot the first time? Next time yes may be a crap shoot, but at that point, the pet scan only showed a 1.6cm cancerous node under my pecminor. And I wanted to Blast this thing with what was most likely to work. I didn't get all the treatment I advocated for, but what I did get, I believe saved my life. How did I make these choices? I prayed over them. Thats all I can say. I went from stage3c with mets to clavicular nodes still in my body before treatment, to NED after my chemo. I am not saying everyone should do what I did, but we also shouldn't just say OK to everything they want to do to us either.
All the best and if you find a way to convince the authorities in control to look at us individually, I will help in any way I can.
Lisa

warrior1

Checo,
Rational Therapeutics or Weisenthal Laboratories in Southern California, does live tissue assays. If you have a tumor that can be sampled, RT or WL will actually do chemo sensitivity and resistance testing. This 'live' assay can recommend which chemos will and which will not be of benefit. It cuts out the 'trial by error'..........and the 'guinea pig'/'lab rat' feeling..........that we all have on occasion.

The FDA/CT process is long and tedious.............and, inefficient, most will agree. There are many drugs (non-chemo)coming down the pipeline........and vaccines as well. Extensive profiling is something that needs to be done from the start. It's essential to know a full profile, because so many of the CT drugs are being developed for stopping certain specific actions in the 'turning on' and the 'turning off' of specifics on cell growth.

With the whole 'cure by 2020' campaign, there are so many new drugs being made. There are also, 'fast tracking' of drugs that have shown great success......and this makes options for some of us, who don't have many options left.

Adriamycin is a very effective, first line drug. It's gnarly, but does work well. Hopefully, it will knock all of your IBC out. If you decide to go to RT or Weisenthal, you can get a list of drugs (specific to you, alone) to choose from.
If you aren't stage 4, you can still be successfully treated..............and get to a point of NED (No Evidence of Disease). One step at a time.
Best regards.

timarief

To use RT or WL you must have a fresh live sample... have our doctor agree to it, and realize that insurance will likely not pay for it.
For whatever reason, most oncologists still do not believe in this technology... otherwise all removed tumors would be sent for testing.

Remarkable

I too, have no desire to be this grand science experiment I find myself in. Try asking your MO what his grade has been with other stage iv breast cancer patients!

I also believe in the value of the chemo sensitivity testing vs. the roulette wheel of trial and error, sometimes many errors. I have found it strange that in all this time, with ductal, lobular and inflammatory breast cancers all with their own unique biology and they are treated the same with the exception of hormonal positive. I find this mentality likened to the horse and buggy era and would like to see acceptance of 21st century medicine.

But alas, and I dislike sounding cynical, these tests would act like gate keepers, and that means much revenue would be missed from the paradigm that is currently used. Also, if IPT therapy became main stream, think of the lost revenue by using not only chemo assay testing but also only 5 to 10 percent of chemotheraputic agents. That alone has the potential to make the pharmaceutical industry and many Dr.'s shudder at the mere thought.

Wishing you the very best in your most admirable and ambitious endeavour. It will be people such as yourself that bring so many advances into fruition :)

Checo
  • By Checo
  • Reply 3706627 · In reply to 3703507 by langley10101
  • January 15, 2013 at 12:45 am
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Thanks a lot for all of your encouragements.

Here are my next steps:
- Contact potential research companies such as "Rational Therapeutics or Weisenthal Laboratories in Southern California, etc" to find more about the following capabilities: 1- Analysis of initial tumors, 2- Ability to monitor progress of the patient during treatment, for example if they can receive periodic blood samples, or receive specific data for testing conducted by our MDs, ...etc.

- Study the possibility of applying for research money from the government to fund The project, I'll properly ask for collaboration among the interested researches, our oncology teams, diagnostic radiologist, and interested primary care MDs. The goal is to draft a collective proposal into how we see things would work together We will participate in this research as the real environment to be monitored and be satisfied by the treatments. Of course, each of us need to be educated on treatment options, indicators of our responses during the treatments, expectations and verification of the optimized solutions. (of course this is not as easy, as I make it sound, but having the right people in the right place, we can do anything)

- During this time I'll continue on with my planned treatment as suggested by my oncology, and will work with my team as needed to suggest incremental introduction of additional analysis of the treatments versus my actual responses that would be measured as recommended by our experts.

If you are interested, you may do similar activities as it apply to your unique situations and please let us all share our findings and start to put together a plan. I'll share with you any progress I'll make in those areas, and also looking forward for any other ideas into have to coordinate together, or provide corrections. I'm not sure how fast we will be able to actually benefit from this, but I'm sure it would be a start point to address real issues for cancer patient.

Checo
  • By Checo
  • Reply 3708367 · In reply to 3704309 by timarief
  • January 15, 2013 at 3:39 pm
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Question:
I wounder if there are any labs that can accept blood samples, or urine samples, or...etc just anything that can be tolerable from the patient in real time to analyse for baseline and trends with the objectives to identify the patient-specific "biomakers" for baseline and trending at the start, the end, and during each treatment exercised by each patient. Real time data collection need to be supported by the lab.

timarief

My doctors has my blood tested monthly for CTC... Circulating Tumor Cells, it is a pretty accurate indicator of how well the treatment is going... but it is meant to show what is or isn't working... not what could potentially work best.

Checo

Do you know what kind of equipment they use to measure that. I don't believe that this kind of equipment exist in most clinical locations? Are you still going through Chemo or Radiation? What is the output indicators looks like?

thanks

timarief

The CTC is just a blood test... and it is not sent out, it is done at the hospital. My doctors orders it every month as well as testing for many other things. If you google Circulating Tumor Cells, you will find some pretty good data on it. It is just another way to measure effectiveness of treatments besides your tumor markers. Scans are still the best indicator of how things are progressing...but we don't get them every month.

Basically your CTC count should be less than 5 every month.

I am ER+, Her2- with bone mets so I am on Faslodex and Xgeva. I did have radiation for pain control and to help with a spinal fracture immediately upon my stage 4 diagnosis last October.

I love the idea of the live tissue assay testing, but until I need surgery again I won't have fresh tumor tissue to send. When I had my breast tumor removed, I was only stage 3 and they don't go to the expense of assay testing generally until you are stage 4. And no doctor that I know will do surgery just to get tissue for assay testing.
Hope this helps.
Timarie

langley10101

Thats exactly why chemosensitivity should be done and coordinated with the mastectomy or lumpectomy WITHOUT the patient having to do the research to ask for it! The surgical approach has to be revisited.... they have a very crucial opportunity to be GAME CHANGERS for all women with a new cancer diagnosis.

megk7

I haven't done it yet, but RGCC is a blood test that discovers which chemo/alternative/neutraceuticals will work best for you. Oasis of Hope in Irvine does these tests as do other integrative clinics. It's in my plan later down the line. I didn't learn about it until I had already started chemo - which seems to be working very well so far.

It would be fantastic if these types of services were to become standard of care.

langley10101

I sent my blood to RGCC for chemo testing, did the most effective chemos.... so far I am NED...Had a 1.6cm tumor in node near chest wall before chemo...

Checo

To: MegK7

I'm glad that the chemo seems to be working. I was just wondering how and when did you feel that it is working? how many cycles it took to notice a change ? did the size of the tumor changed based on CT scans?

megk7
  • By megk7
  • Reply 3716202 · In reply to 3716000 by Checo
  • January 18, 2013 at 1:47 am
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We noticed a change after the first dose. Because the mets is in my liver (no where else - according to the PET Scan, CT Scan and Ultrasound) and because of my reactions to taxotere 11 years ago with my first bc diagnosis, my oncologist started me on a 60%-of-normal dose. About day 5 of the first session, I felt a few pains - almost like gas pains - along the top lobe and down the side lobe. I had an image come to mind - that the lesions were scabbing over and falling off. After two weeks, I noticed less distension and tenderness. The blood tests done weekly confirmed that the main three numbers we are watching were improving. The plan is for me to have 6 sessions. I just had number 4 on Wednesday this week. My labs from the day before showed even more improvement: When I was diagnosed in Oct 2012, my alk phos was 442, AST was 113, ALT was 105. Tumor markers were CA 15-3 2615.20 and CA 27.29 2656.38. We have not retested the tumor markers yet - I think the doctor will order that next week. On Monday (before chemo) my alk phos was 109 (normal range is 34-104) AST was 24 (normal range of 13-39), and ALT was 32 (normal range of 7-52). YIPPEE!!

Two of the doctors on my team said that having tumor markers that high meant that the test should be fairly accurate to use in tracking - for many patients it's not - and that my immune system was reacting strongly. My oncologist doesn't plan on doing any more scans for now, because all other indicators say we are moving in the right direction and he doesn't want to expose me to more radiation and toxicity than necessary. On chemo number 4, he put me on a 70% dose - if I do well, he wants to titrate up closer to a full normal dose. Right now, I think that if I continue to improve as I have at these lower doses, I'm going to ask to leave it there.

I'm on taxotere/herceptin/perjeta and will have herceptin and perjeta for a year after taxotere is finished. I have a conventional oncologist for chemo and an integrative/alternative doctor who is guiding me with nutrition, supplements and other supportive therapies. My oncologist has reviewed all of my supplements - some of them are very powerful antioxidants and to alleviate his concern that these can act as protectants to cancer cells too (the integrative doctor doesn't agree and is sending me the science behind her opinion to me) I take them until two days before chemo and start up again after chemo as soon as the side effects have diminished enough for me to swallow them and not upset my stomach/intestines. Once chemo is completed, I will be starting a pancreatic enzyme protocol through my alternative doc.

Hope this answers your questions and isn't too much information...

Checo

To: Megk7

Thank you very very very much. I hope you will keep doing well, it seems that you are in top of the best options for your treatment.

This was helpful to me as it confirms that there are other tumor markers, besides the size, that can be more accurate and timely in evaluating progress of the treatment in destroying the cancer cells. Also knowing that those markers can be measured from blood samples is very promising for discovering easier treatments for cancer.

Checo

I'm little bit disappointed about being able to have much effect in personalizing my own treatment. It seems to me that oncs have to much follow the established essays set by the industry, especially if the patient is not stage 4 yet. I still don't know whom should I be in contact with, in order to allow more flexibility for the patient and their oncs to get some flexibility without breaking the rules. I have heard about the trials for Dr. byrzyenski. His approach to treatments of cancer makes a lot of sense. you can see more about that at the attached link. I was wondering if anyone has worked with him?

http://articles.mercola.com/sites/articles/archive/2013/01/19/cancer-doctor -burzynski.aspx?e_cid=20130127_SNL_MS_1&utm_source=snl&utm_medium=email&utm _campaign=20130127

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