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

[Guest guest]

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

I was diagnosed with IBC stage IV last September, I am also triple negative as

well. I just finished 6 months of chemo in March and had a mastectomy in May

(with clear margins) but because the skin wasn't healing after the mastectomy, I

had to have a skin graft. I am due for 4 field radiation next week.

I have noticed in the last couple of weeks since my graft has healed 4 places

outside, inside and near the skin graft that the IBC has started already. I had

a needle biopsy on the largest of the nodules - I already know it is back but

the results will be in next week. I have been on the cancer train for almost a

year now and I want off!

And I am not ready to buy the farm just yet.

I don't know what to ask- help? any thoughts of where to start - IBC is rare and

nasty and my pathology that came back about my cancer was something that the

oncologists have never heard of EVER - I guess I just want to know that there

are

others out there with the same or similar thing as myself and can offer a ray of

hope. I AM doing my best to see the forest for the trees, stay positive and

fight this all the way.

[Guest guest]

I spoke to my doctor from UCLA about this, and I was asking her what they are

treating IBC with. PARP inhibitors as mentioned are currently in trial and are

showing much promise. She did say that for IBC, they were having some success

using herceptin. You may want to find out if they can check your her2 status.

Where in the country are you?

Best wishes

Fern

Also visit breast cancer.org and visit the forums, there are IBC survivors who

have a section.

From: Incigul Sayman

Sent: Friday, July 16, 2010 1:43 PM

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

together

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

I was diagnosed with IBC stage IV last September, I am also triple negative as

well. I just finished 6 months of chemo in March and had a mastectomy in May

(with clear margins) but because the skin wasn't healing after the mastectomy, I

had to have a skin graft. I am due for 4 field radiation next week.

I have noticed in the last couple of weeks since my graft has healed 4 places

outside, inside and near the skin graft that the IBC has started already. I had

a needle biopsy on the largest of the nodules - I already know it is back but

the results will be in next week. I have been on the cancer train for almost a

year now and I want off! And I am not ready to buy the farm just yet.

I don't know what to ask- help? any thoughts of where to start - IBC is rare

and nasty and my pathology that came back about my cancer was something that the

oncologists have never heard of EVER - I guess I just want to know that there

are others out there with the same or similar thing as myself and can offer a

ray of hope. I AM doing my best to see the forest for the trees, stay positive

and fight this all the way.

[Guest guest]

Herceptin is not an option for triple negatives.

>

> I spoke to my doctor from UCLA about this, and I was asking her what they are

treating IBC with. PARP inhibitors as mentioned are currently in trial and are

showing much promise. She did say that for IBC, they were having some success

using herceptin. You may want to find out if they can check your her2 status.

Where in the country are you?

>

> Best wishes

> Fern

[Guest guest]

Hi Karin,

Just wondering if you're following an Alkaline Diet so that the cancer has very

little if anything to feed on. After my BC diagnosis I went on the Alkaline diet

(it's easy) and took alot of supplements known to fight cancer (no doubt too

many). I also had an herbalist who helped me alot with what to take. There is so

much more you can do and there are those here that are way more knowledgeable

than I. It helped alot to visualize myself well and to know I was and am being

completely cared for. I'm praying for you and I'm here for any assistance I can

provide. When a negative thought comes if you can replace it with a positive

statement it would help (negative thoughts and feelings create an acid

environment). I didn't think about what the Dr's were saying and kept telling

myself (My best good is getting better, or I am being completely cared for and

healed). Praying for you best good,

________________________________

From: karin uu <delightyear@...>

Sent: Fri, July 16, 2010

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

I was diagnosed with IBC stage IV last September, I am also triple negative as

well. I just finished 6 months of chemo in March and had a mastectomy in May

(with clear margins) but because the skin wasn't healing after the mastectomy, I

had to have a skin graft. I am due for 4 field radiation next week.

I have noticed in the last couple of weeks since my graft has healed 4 places

outside, inside and near the skin graft that the IBC has started already. I had

a needle biopsy on the largest of the nodules - I already know it is back but

the results will be in next week. I have been on the cancer train for almost a

year now and I want off! And I am not ready to buy the farm just yet.

I don't know what to ask- help? any thoughts of where to start - IBC is rare and

nasty and my pathology that came back about my cancer was something that the

oncologists have never heard of EVER - I guess I just want to know that there

are others out there with the same or similar thing as myself and can offer a

ray of hope. I AM doing my best to see the forest for the trees, stay positive

and fight this all the way.

[Guest guest]

She is not a triple negative, she has IBC, which is not related to being a

triple negative.

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

together

Herceptin is not an option for triple negatives.

>

> I spoke to my doctor from UCLA about this, and I was asking her what they

are treating IBC with. PARP inhibitors as mentioned are currently in trial and

are showing much promise. She did say that for IBC, they were having some

success using herceptin. You may want to find out if they can check your her2

status. Where in the country are you?

>

> Best wishes

> Fern

[Guest guest]

Fern,

Go back and reread the original message. She is triple negative. IBC, like

other types of breast cancer, can be hormone positive or triple negative.

ar

>

> She is not a triple negative, she has IBC, which is not related to being a

triple negative.

[Guest guest]

No , I haven't been following an alkaline diet but I realize that I need

to. What supplements are you on? I am thinking of talking to a naturopath and

seeing what info they can give me. Thank you for your prayers.

best

karin

>

> Hi Karin,

> Just wondering if you're following an Alkaline Diet so that the cancer has

very

> little if anything to feed on. After my BC diagnosis I went on the Alkaline

diet

> (it's easy) and took alot of supplements known to fight cancer (no doubt too

> many). I also had an herbalist who helped me alot with what to take. There is

so

> much more you can do and there are those here that are way more knowledgeable

> than I. It helped alot to visualize myself well and to know I was and am being

> completely cared for. I'm praying for you and I'm here for any assistance I

can

> provide. When a negative thought comes if you can replace it with a positive

> statement it would help (negative thoughts and feelings create an acid

> environment). I didn't think about what the Dr's were saying and kept telling

> myself (My best good is getting better, or I am being completely cared for and

> healed). Praying for you best good,

>

>

>

> ________________________________

> From: karin uu <delightyear@...>

> Sent: Fri, July 16, 2010

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

>

> I was diagnosed with IBC stage IV last September, I am also triple negative as

> well. I just finished 6 months of chemo in March and had a mastectomy in May

> (with clear margins) but because the skin wasn't healing after the mastectomy,

I

> had to have a skin graft. I am due for 4 field radiation next week.

>

> I have noticed in the last couple of weeks since my graft has healed 4 places

> outside, inside and near the skin graft that the IBC has started already. I

had

> a needle biopsy on the largest of the nodules - I already know it is back but

> the results will be in next week. I have been on the cancer train for almost a

year now and I want off! And I am not ready to buy the farm just yet.

>

> I don't know what to ask- help? any thoughts of where to start - IBC is rare

and nasty and my pathology that came back about my cancer was something that the

oncologists have never heard of EVER - I guess I just want to know that there

are others out there with the same or similar thing as myself and can offer a

ray of hope. I AM doing my best to see the forest for the trees, stay positive

and fight this all the way.

>

[Guest guest]

Karin,

Please look at Vitamin D, iodine, and melatonin as additions to your treatment.

http://www.breastcancerchoices.org talks about iodine for breast health.

ar

>

> No , I haven't been following an alkaline diet but I realize that I need

to. What supplements are you on? I am thinking of talking to a naturopath and

seeing what info they can give me. Thank you for your prayers.

>

> best

> karin

[Guest guest]

hi ar - i have been on Vit D for a long time now and not a 'regular dosage'

either my GP has me on a big one. I will check out the link you sent - what does

melatonin do?

best

karin

> >

> > No , I haven't been following an alkaline diet but I realize that I

need to. What supplements are you on? I am thinking of talking to a naturopath

and seeing what info they can give me. Thank you for your prayers.

> >

> > best

> > karin

>

[Guest guest]

Low levels of melatonin are linked to breast cancer.

ar

>

> hi ar - i have been on Vit D for a long time now and not a 'regular dosage'

either my GP has me on a big one. I will check out the link you sent - what does

melatonin do?

>

> best

> karin

[Guest guest]

Hi Karin,

I take 5000 iu of vitamin D3 a day, and also melatonin at night, melatonin is

produced when we are sleeping, and if we do not get enough sleep or as we age,

we make less of it. Taken a half hour before bed, it will make you sleep

better. I was advised to take upto 20mg, but I found it gave me a headache. I

now take 6mg a night, and that seems to be my comfort zone. Those are the only

two supplements I now take. I have however, pretty much tried them all. I also

like licorice root for stress. It is also very helpful for stomach irritation

during chemo. I never took the Nexium I was advised to take during chemo, I

just took licorice root. I would dissolve the powder from the capsule in my

mouth. These are the things I found worked for me. You may also want to up

your selenium intake.

Best wishes

Fern

From: karin uu

Sent: Saturday, July 17, 2010 11:36 PM

hi ar - i have been on Vit D for a long time now and not a 'regular dosage'

either my GP has me on a big one. I will check out the link you sent - what does

melatonin do?

best

karin

[Guest guest]

Hi Fern,

Licorice root is used for adrenal fatigue. Unfortunately, it makes me NOT

sleep, so I cannot take it. I think I threw away a bottle of it, I wish I had

known, I would have just sent it to you.

Some people say the melatonin headache goes away after a few days. How long did

you try it at 20mgs? 20 is the therapeutic dose for breast cancer. However,

I'm sure that daily use of whatever amount you can handle is fine.

ar

>

> Hi Karin,

>

> I take 5000 iu of vitamin D3 a day, and also melatonin at night, melatonin is

produced when we are sleeping, and if we do not get enough sleep or as we age,

we make less of it. Taken a half hour before bed, it will make you sleep

better. I was advised to take upto 20mg, but I found it gave me a headache. I

now take 6mg a night, and that seems to be my comfort zone. Those are the only

two supplements I now take. I have however, pretty much tried them all. I also

like licorice root for stress. It is also very helpful for stomach irritation

during chemo. I never took the Nexium I was advised to take during chemo, I

just took licorice root. I would dissolve the powder from the capsule in my

mouth. These are the things I found worked for me. You may also want to up

your selenium intake.

>

> Best wishes

> Fern

[Guest guest]

Hi Fern

It's weird but I sleep well - I have had a few rough nights but then I fall

asleep - do you think i still need melatonin? I will look into selenium as you

suggest.

I had mentioned it in one of my notes back to - but having help and

thoughts of those on a similar journey makes a difference and helps me keep on

with my one foot forward mentality. I appreciate all the advice and thoughts and

prayers.

Best

karin

>

> Hi Karin,

>

> I take 5000 iu of vitamin D3 a day, and also melatonin at night, melatonin is

produced when we are sleeping, and if we do not get enough sleep or as we age,

we make less of it. Taken a half hour before bed, it will make you sleep

better. I was advised to take upto 20mg, but I found it gave me a headache. I

now take 6mg a night, and that seems to be my comfort zone. Those are the only

two supplements I now take. I have however, pretty much tried them all. I also

like licorice root for stress. It is also very helpful for stomach irritation

during chemo. I never took the Nexium I was advised to take during chemo, I

just took licorice root. I would dissolve the powder from the capsule in my

mouth. These are the things I found worked for me. You may also want to up

your selenium intake.

>

> Best wishes

> Fern

>

>

> From: karin uu

> Sent: Saturday, July 17, 2010 11:36 PM

>

> hi ar - i have been on Vit D for a long time now and not a 'regular dosage'

either my GP has me on a big one. I will check out the link you sent - what does

melatonin do?

>

> best

> karin

>

[Guest guest]

Hi Karin,

I only suggested Melatonin as I have been told, and have read that it is

extremely beneficial against breast cancer. That said, I believe that if

something isn't broke, then don't try fix it. If you are sleeping well,

melatonin may or may not be beneficial. As Steve mentioned regarding his teeth,

I too removed root canals, and mercury from my mouth, and I do believe that this

made an enormous difference in the positive outcome I have had. There are

numerous books written on the subject and I can suggest some reading, as may

others if you are interested. I know it helped improve my adrenal function, and

most importantly my immune system. So this is another area you may want to look

at. It is a subject all of its own and there are groups you can join which

focus on this area alone.

Best wishes

Fern