Re: Scared - well terrified and trying to keep it together--Responding Well

July 16, 2010

One of the most important discussions a patient needs to have with a physician,

and that includes any Oncologist that suggests a " good response " and

specifically what they mean by that.

Too often we have learned that " response " is relative to Tumor Shrinkage, not

Survivability. I have read study after study regarding 'response' and in the

same study, the admission that no benefit towards longevity is seen.

One needs to 'pin' those kinds of statements down and to do it, ask exactly what

'they' consider 'Good Response'? If another term is 'thrown at you', the one

that uses " Relative " in their positive talking, ask them what the 'Absolute'

benefit is. Conventional practitioners and researchers often use the

" relative " term which might be, for example, a 2% benefit and make it look like

it is 40-50% but in reality is just the 2% figure that is real while the other

is manipulation.

Joe C.

Incigul Sayman wrote:

I am sorry about your diagnosis. I am triple negative as well, though not IBC.

One thing that is emerging as therapy for triple negatives (and others) is the

PARP trial. I know of several women with stage IV triple negative who are

responding well. Have you asked your onc. about this? Also, I would seek out IBC

experts for your treatment. You need knowlegable oncologists who are familiar

with this challenging diagnosis. A major cancer center or hospital can help

direct you to the proper doctors. My best to you.

Mimi

July 17, 2010

The good response has to do with arresting the progression of the disease and

extending life. The PARP trial is so far promising in this area.Â

I am sorry about your diagnosis. I am triple negative as well, though not IBC.

One thing that is emerging as therapy for triple negatives (and others) is the

PARP trial. I know of several women with stage IV triple negative who are

responding well. Have you asked your onc. about this? Also, I would seek out IBC

experts for your treatment. You need knowlegable oncologists who are familiar

with this challenging diagnosis. A major cancer center or hospital can help

direct you to the proper doctors. My best to you.

Mimi

July 17, 2010

If an article is going to herald " arresting Progression " and " extending life "

then what needs to be shown is the evidence of that. Admittedly I did find one

reference where PARP, compared to Chemotherapy alone, is claimed to have

resulted in three months more survivability. Additionally the study I read

about claimed that 41% of the women in the trial showed a " positive " result.

What " positive " means in this situation was not easily determined. Assuming one

was going to use Chemotherapy, and many on this list will not, or any longer, I

am sure they would want the additional three months of life that PARP

treatments indicated might be possible. No attempt here to minimize living

longer.

The advice to 'pin the practitioner down is as valid now as it always has been.

Too often the figures are skewed to show a non-existent benefit or one that is

so minimal that if known, would often preclude accepting the treatment. What

needs to be shown are the trials showing the Real successes, not just a

statement about them. Often the time between 'remission' and disease

progression is extremely small and often doesn't show up in initial tests. What

I did read in some of the information about PARP, and there are many methods

using it, is a lot of words such as " potential " , " may " and statements that

more testing needs to be done. So, if your Oncologist is recommending anything

in the way of treatment, make them provide you with the answers. If they balk

at giving you straight answers, find another physician.

Here's a simple example how numbers can be presented and in a way that would

fool the average person:

The following assumes a doctor talking to a patient:

Dr. White-Coat took as an example the prescription of the bisphosphonate drugs

in the treatment and prevention of osteoporosis...but identical issues apply to

the use of anticancer drugs. The journal in question had written that one of

those drugs produced almost " a 50 percent decrease " in the risk of new

fractures. Addressing himself to a hypothetical patient, Dr. McCormack

reinterpreted this statement in terms of absolute risk: " Mrs. , your risk

of developing a...fracture over the next three years is approximately 8 percent.

If you take a drug daily for the next three years, that risk can be reduced from

8 percent to around 4 percent, or a difference of just over 3 percent. " Of

course that sounds far less impressive than saying that taking the drug will

decrease the risk of fracture by almost half, even though technically both are

mathematically accurate ways of expressing the benefit to be gained by the

therapy.

Unfortunately some doctors would have said it: " Mrs. , this reduces your

chance of fracture by about 50% " 3 vs. 8 right? NO, it's still only 3%.

Ask and do not settle for voodoo numbers.

Joe C.

From: Incigul Sayman

Sent: Saturday, July 17, 2010 2:47 PM

Subject: Re: [ ] Scared - well terrified and trying to keep it

together--Responding Well

The good response has to do with arresting the progression of the disease and

extending life. The PARP trial is so far promising in this area.

I am sorry about your diagnosis. I am triple negative as well, though not IBC.

One thing that is emerging as therapy for triple negatives (and others) is the

PARP trial. I know of several women with stage IV triple negative who are

responding well. Have you asked your onc. about this? Also, I would seek out IBC

experts for your treatment. You need knowlegable oncologists who are familiar

with this challenging diagnosis. A major cancer center or hospital can help

direct you to the proper doctors. My best to you.

Mimi

July 17, 2010

Joe,

My stage 4 friends on the PARP trial have had all their bone pain go away and

some are now NED. That sounds pretty damn good to me.

Does it really matter how long the remission is? If it means they have better

quality of life, is that not important?

I know you think that there have been no advancements in the western medicine

world, but you are incorrect. I don't know what the future holds for PARPs, but

my friends are living their lives. Their progression has stablized or they've

become NED.

ar

>

> I am sorry about your diagnosis. I am triple negative as well, though not IBC.

One thing that is emerging as therapy for triple negatives (and others) is the

PARP trial. I know of several women with stage IV triple negative who are

responding well. Have you asked your onc. about this? Also, I would seek out IBC

experts for your treatment. You need knowlegable oncologists who are familiar

with this challenging diagnosis. A major cancer center or hospital can help

direct you to the proper doctors. My best to you.

>

> Mimi

>

July 17, 2010

ar, I agree with you. I tried natural treatments, and I still believe that diet

is extremely important, but it did not stop my stage II breast cancer from

progressing over a period of a year from 3rd to 4th stage cancer. On the other

hand, the chemo and herceptin stopped the cancer dead in its tracks after just

two treatments (6 weeks). My bone pain is gone and I can breathe again (the

cancer was in both lungs). So, I know now, to keep my mind open to everything.

I also followed a macrobiotic diet, which I believe made me strong enough to

deal with getting better.

Best wishes

Fern

From: arlynsg

Sent: Saturday, July 17, 2010

Joe,

My stage 4 friends on the PARP trial have had all their bone pain go away and

some are now NED. That sounds pretty damn good to me.

Does it really matter how long the remission is? If it means they have better

quality of life, is that not important?

I know you think that there have been no advancements in the western medicine

world, but you are incorrect. I don't know what the future holds for PARPs, but

my friends are living their lives. Their progression has stablized or they've

become NED.

ar

July 17, 2010

Testimonials are fine and what I suggested was that practitioners or people

making claims, provide the evidence, from the people that work with a particular

treatment. There was no denigrating of PARP or any other treatment and it

isn't me that " thinks " there is no advancement in Western Medicine but from the

mouths of their own practitioners that as regards cancer, the advances are far

behind what is often claimed and certainly for the outlay and that because the

money is being skimmed off the top by the fund-raisers. Without qualifying

what I am about to say,

except for a very few cancers, there has been little progress in how people are

treated. Of course we are not speaking about comfort.

Does it matter how long one is in remission? Of course it matters and if many

people were given the facts (truth) about some of the protocols for cancer and

given the horrendous facts about how long they might be in remission, or live, I

suspect a lot of people would be thinking differently as to whether or not to

proceed with a treatment that offers little in the way of benefit.

Of course quality of life is important and I dare say that most chemotherapy is

not designed to give a better quality of life........on the other hand, is

designed, out of necessity, to offer much less quality of life or it would not

work. It is a powerful poison.

You cannot lump all conventional medicine into what I wrote about making an

Oncologist show you exactly what he/she is saying.

As for my belief in what Medicine in general is all about...........I venture to

say that my thoughts on the subject dovetail with most people seeking

Alternative measures or, at least, those that have studied it long enough.

It is not me that has condemned the Cancer Industry but professionals, both

Conventional and Alternative.

To sum it up:

Yes quality of life is important. VERY. Most conventional treatments for

cancer provide very little.

Does how long one is in remission matter? VERY MUCH. Especially to know

whether to proceed or not OR if it would offer relief for someone in an

irreversible situation. Irreversible by conventional standards.

Remember, none of the original discussions on this subject spoke to Bone Pain

Going Away so there was no need to jump to the defense of The Cancer Industry.

You responded to a question or comment that was never made. I do not think you

are questioning the wisdom in making a physician commit themselves to what they

are saying. If you are and you don't think that is necessary then I take

exception to that.

That was pretty much my point in both e-mails besides my doing a little

searching on PARP. Note I said 'little'. I did not see anything about Bone

Pain so perhaps doctors need to start publishing things we we outsiders can

learn more. Perhaps you can find reference material (links) so we can learn

more.

Joe C.

From: arlynsg

Sent: Saturday, July 17, 2010 5:59 PM

Subject: [ ] Re: Scared - well terrified and trying to keep it

together--Responding Well

Joe,

My stage 4 friends on the PARP trial have had all their bone pain go away and

some are now NED. That sounds pretty damn good to me.

Does it really matter how long the remission is? If it means they have better

quality of life, is that not important?

I know you think that there have been no advancements in the western medicine

world, but you are incorrect. I don't know what the future holds for PARPs, but

my friends are living their lives. Their progression has stablized or they've

become NED.

ar

>

> I am sorry about your diagnosis. I am triple negative as well, though not IBC.

One thing that is emerging as therapy for triple negatives (and others) is the

PARP trial. I know of several women with stage IV triple negative who are

responding well. Have you asked your onc. about this? Also, I would seek out IBC

experts for your treatment. You need knowlegable oncologists who are familiar

with this challenging diagnosis. A major cancer center or hospital can help

direct you to the proper doctors. My best to you.

>

> Mimi

>

July 17, 2010

Hello All

Thank you for the responses and the valid subjects and testimonials that have

been brought up.

I live in Canada btw - Alberta - and the Onc Doc I have is very progressive in

regards breast cancer and to my weird cancer and the pathology is truly weird. I

however am not giving up and I will start the Budwig Protocol.

My cancer is very aggressive and it is both IBC as in Inflammatory Breast Cancer

- mind you my Onc said that just basically means 'Red Hot Breast' and well, mine

was before my mastectomy - the tumors are coming back however - I still have

radiation to go. I think a combo of things is what I am looking at to help me.

And I am not dwelling on 'how much time I have or how many months etc'. I am

concentrating on quality of life and getting to that magic of remission!

As for the Parp inhibitor trials I am not eligible for them. It was one of the

first things I asked my Onc Doc. I was tested for the BRCA1 and BRCA2 genes and

I don't test positive for either therefor it makes me ineligible for the trials.

I am very realistic about all of this and I again thank you all for the

suggestions - I have a lot of research to do I think!

July 17, 2010

Karin,

I LOVE the Budwig mixture, but I'm allergic and can't eat it. I see you are

looking for a combination of treatments. Please double check, but I think with

Budwig, it is best not to combine it with other protocols. I have no idea how

it would work with radiation.

Best of luck to you.

ar

>

> Hello All

>

> Thank you for the responses and the valid subjects and testimonials that have

been brought up.

>

> I live in Canada btw - Alberta - and the Onc Doc I have is very progressive in

regards breast cancer and to my weird cancer and the pathology is truly weird. I

however am not giving up and I will start the Budwig Protocol.

>

> My cancer is very aggressive and it is both IBC as in Inflammatory Breast

Cancer - mind you my Onc said that just basically means 'Red Hot Breast' and

well, mine was before my mastectomy - the tumors are coming back however - I

still have radiation to go. I think a combo of things is what I am looking at to

help me. And I am not dwelling on 'how much time I have or how many months etc'.

I am concentrating on quality of life and getting to that magic of remission!

>

> As for the Parp inhibitor trials I am not eligible for them. It was one of the

first things I asked my Onc Doc. I was tested for the BRCA1 and BRCA2 genes and

I don't test positive for either therefor it makes me ineligible for the trials.

>

> I am very realistic about all of this and I again thank you all for the

suggestions - I have a lot of research to do I think!

>

July 17, 2010

Hi ar - what I meant was I am still going ahead with the radiation that is

scheduled for me and I am gong to go on the Budwig Protocol. I am not planning

to mix a bunch of protocols - the Budwig one is probably all I can handle! I

believe I have read that people can be n radiation and are also on BP. I am sure

that there are others that will correct me if I am wrong. Thank you for your

note.

Best

karin

> >

> > Hello All

> >

> > Thank you for the responses and the valid subjects and testimonials that

have been brought up.

> >

> > I live in Canada btw - Alberta - and the Onc Doc I have is very progressive

in regards breast cancer and to my weird cancer and the pathology is truly

weird. I however am not giving up and I will start the Budwig Protocol.

> >

> > My cancer is very aggressive and it is both IBC as in Inflammatory Breast

Cancer - mind you my Onc said that just basically means 'Red Hot Breast' and

well, mine was before my mastectomy - the tumors are coming back however - I

still have radiation to go. I think a combo of things is what I am looking at to

help me. And I am not dwelling on 'how much time I have or how many months etc'.

I am concentrating on quality of life and getting to that magic of remission!

> >

> > As for the Parp inhibitor trials I am not eligible for them. It was one of

the first things I asked my Onc Doc. I was tested for the BRCA1 and BRCA2 genes

and I don't test positive for either therefor it makes me ineligible for the

trials.

> >

> > I am very realistic about all of this and I again thank you all for the

suggestions - I have a lot of research to do I think!

> >

>

July 17, 2010

Hi,

I do know people here in the U.S. who are not BRAC positive who are on the PARP

trials. I would pursue this further and perhaps taking treatment elsewhere if

possible. None of this is easy and I'm sorry that you are faced with these

decisions. Let us know how you're doing.Â

Mimi

July 18, 2010

Would you search and try on Immunocal - it's made in Canada and Paw Paw Reg Cel

made in USA (Healthy Sunshine Inc)

Vishwajith / Sri Lanka

From: karin uu <delightyear@...>

Subject: [ ] Re: Scared - well terrified and trying to keep it

together--Responding Well

Date: Saturday, July 17, 2010, 5:14 PM

Â