Re: Don't really know how to start this........

[Guest guest]

Zena,

I know I've said this to you before but you have all the love and good thoughts and prayer I can possibly send coming your way. It's just so horrible that you are going through this and so impossibly unfair.

Please keep us posted as you want to and know that you are loved!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Friday, September 11, 2009 12:12:03 PMSubject: Don't really know how to start this........

So I shall dive right in.

I have cancer of the vulva.

I've only known for a few weeks. I've seen my oncologist today and was hoping for some definite answers, but unfortunately because of all my other conditions it's taking longer for them to decide what my best treatment would be.

Originally I thought I was looking at further surgery followed by radiotherapy, but they're thinking of chemo/radiotherapy to either reduce the size of the tumours or possibly to remove them altogether. However the chemotherapy may interract with my current meds.

What has been a blow is that I have been suspended from the tx list. They wouldn't normally accept someone on the list for 6 years after cancer treatment, but this isn't written in stone. They may make exceptions, but they are rare.

I should know more of what's happening a fortnight today.

Whether I have developed this as a direct result of being immune suppressed or whether I would have developed it anyway is of course something that I'll never get an answer to.

Love Ze xx

[Guest guest]

Ze,I am sorry you got hit with another whammy. Please don't be too depressed. My mother fought to be put on a lung transplant list back in 1995 or 1996 and when they found breast cancer she was of course unlisted. It broke her heart and she passed away 2 months later after 5 years with IPF. I was diagnosed in Jan 2002 with IIP and in October 2002 (BC month of course) with breast cancer myself. Luckily I only had to do radiation but fighting everything I had and dealing with lung cancer in my dear husband made me a stronger person. 8 years later still fighting. I tell my kids they will have to carry me out kicking and screaming cuz I won't go easy. Be positive and know that you have all our love and wishes.Dyane Phoenix ipf 02>> > So I shall dive right in.> > I have cancer of the vulva.> > I've only known for a few weeks. I've seen my oncologist today and was> hoping for some definite answers, but unfortunately because of all my> other conditions it's taking longer for them to decide what my best> treatment would be.> > Originally I thought I was looking at further surgery followed by> radiotherapy, but they're thinking of chemo/radiotherapy to either> reduce the size of the tumours or possibly to remove them altogether. > However the chemotherapy may interract with my current meds.> > What has been a blow is that I have been suspended from the tx list. > They wouldn't normally accept someone on the list for 6 years after> cancer treatment, but this isn't written in stone. They may make> exceptions, but they are rare.> > I should know more of what's happening a fortnight today.> > Whether I have developed this as a direct result of being immune> suppressed or whether I would have developed it anyway is of course> something that I'll never get an answer to.> > Love Ze xx>

[Guest guest]

didn't read; the whole post yet, but don't know what to say, just had to respond

my thoughts are with you

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Don't really know how to start this........To: Breathe-Support Date: Friday, September 11, 2009, 12:55 PM

Zena, What profoundly sad news! You are a very strong girl and no matter what is decidedyou will beat this latest bump in the road.I know that you wanted the TX but now,..one step at a time is theway to go.I'll have you in my thoughts.

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah and Sara

“I’m gonna be iron like a lion in Zion†Bob Marley

Vinca Minor-periwinkle is my flower

bty12827590 wrote:

So I shall dive right in.

I have cancer of the vulva.

I've only known for a few weeks. I've seen my oncologist today and was hoping for some definite answers, but unfortunately because of all my other conditions it's taking longer for them to decide what my best treatment would be.

Originally I thought I was looking at further surgery followed by radiotherapy, but they're thinking of chemo/radiotherapy to either reduce the size of the tumours or possibly to remove them altogether. However the chemotherapy may interract with my current meds.

What has been a blow is that I have been suspended from the tx list. They wouldn't normally accept someone on the list for 6 years after cancer treatment, but this isn't written in stone. They may make exceptions, but they are rare.

I should know more of what's happening a fortnight today.

Whether I have developed this as a direct result of being immune suppressed or whether I would have developed it anyway is of course something that I'll never get an answer to.

Love Ze xx

[Guest guest]

Zena,I am not the best at phrasing things, but my thoughts and prayers are with you. Take one step at a time, it gets to overwhelming to thing of it all at one time. Keep fighting, we are here for you. (I tend to lurk more than respond, but I am always around.)Take care.IPF/NSIP 08 NCSubject: Don't really know how to start this........To: Breathe-Support Date: Friday, September 11, 2009, 12:12 PM

So I shall dive right in.

I have cancer of the vulva.

I've only known for a few weeks. I've seen my oncologist today and was hoping for some definite answers, but unfortunately because of all my other conditions it's taking longer for them to decide what my best treatment would be.

Originally I thought I was looking at further surgery followed by radiotherapy, but they're thinking of chemo/radiotherapy to either reduce the size of the tumours or possibly to remove them altogether. However the chemotherapy may interract with my current meds.

What has been a blow is that I have been suspended from the tx list. They wouldn't normally accept someone on the list for 6 years after cancer treatment, but this isn't written in stone. They may make exceptions, but they are rare.

I should know more of what's happening a fortnight today.

Whether I have developed this as a direct result of being immune suppressed or whether I would have developed it anyway is of course something that I'll never get an answer to.

Love Ze xx

[Guest guest]

Hi Zena,So sorry to hear your bad news. I'm praying that God will give you the strength you need to endure. Your facing a huge mountain to climb not knowing what's on the other side. But what you can know for sure is that you have love and support from your PF friends. I would say live one day at a time, but sometimes all we can do is live one moment at a time. Just never let go of hope. C_53_Familial IPF_5/09WashingtonFrom: bty12827590 <zeasman (AT) btinternet (DOT)

com>Subject: Don't really know how to start this........To: Breathe-Support@ yahoogroups. comDate: Friday, September 11, 2009, 12:12 PM

So I shall dive right in.

I have cancer of the vulva.

I've only known for a few weeks. I've seen my oncologist today and was hoping for some definite answers, but unfortunately because of all my other conditions it's taking longer for them to decide what my best treatment would be.

Originally I thought I was looking at further surgery followed by radiotherapy, but they're thinking of chemo/radiotherapy to either reduce the size of the tumours or possibly to remove them altogether. However the chemotherapy may interract with my current meds.

What has been a blow is that I have been suspended from the tx list. They wouldn't normally accept someone on the list for 6 years after cancer treatment, but this isn't written in stone. They may make exceptions, but they are rare.

I should know more of what's happening a fortnight today.

Whether I have developed this as a direct result of being immune suppressed or whether I would have developed it anyway is of course something that I'll never get an answer to.

Love Ze xx

[Guest guest]

Oh Ze, our Princess Warrier..I am so saddened by your newest hurdle.  You will be in my prayers and I"ll ask for strength and determination for you as you fight this battle too. Remember you have thousands of hugs, ears, and shoulders here at your air family.Mama said the lord will never put more on your shoulders than he knows you can handle.Roxanne, 59, South Carolina

2006 Asthma/ PF

2008 PF/ Sarcoidosis/Gerd

Lady Slipper OrchidSubject: Don't really know how to start this........To: Breathe-Support Date: Friday, September 11, 2009, 12:12 PM

 

So I shall dive right in.

I have cancer of the vulva.

I've only known for a few weeks.  I've seen my oncologist today and was hoping for some definite answers, but unfortunately because of all my other conditions it's taking longer for them to decide what my best treatment would be.  

Originally I thought I was looking at further surgery followed by radiotherapy, but they're thinking of chemo/radiotherapy to either reduce the size of the tumours or possibly to remove them altogether.  However the chemotherapy may interract with my current meds.

What has been a blow is that I have been suspended from the tx list.   They wouldn't normally accept someone on the list for 6 years after cancer treatment, but this isn't written in stone.  They may make exceptions, but they are rare.

I should know more of what's happening a fortnight today.

Whether I have developed this as a direct result of being immune suppressed or whether I would have developed it anyway is of course something that I'll never get an answer to.

Love Ze xx