No news, good news, right?

Jodisgoing180

I'm 15-16 weeks post-front line. My oncologist ordered a pet scan, because my CA-125 was 91 at my first post-cancer appointment (it was going down from treatment).  Anyway, I had my pet scan on Friday.  I was told that the radiologist would read the scan on Friday, and my doctor would have the report Monday.  I called today, and got the nurses answering machine and left a message.  I have not received a phone call.  When I was first diagnosed in February, my oncologist called with biopsy results on a Tuesday night as soon as he got the results.  Should I assume that my scan was clear, because I have not heard?  The anxiety has been really hard on me the last few days.  It's monstronous.  Thoughts?

Edited to add:

It appears to be bad news.  I am meeting with my oncologist on Friday to discuss options.  I had dose dense chemo for 18 weeks, does anyone know if I will have the same regimen again?

Thanks

LorettaMarshall

Jodi~N the world of cancer, silence is not always "golden"!

 

Hi Jodi -

One would think that the oncologist would try another chemo regimen since the one you were on did not produce the desired results.  I read your first entry on the 13th, but really couldn't tell you what the answer might be.  As probably others thought as well,  when you have cancer you can't ASSUME anything.  We hope that the doctors can come up with an alternative chemo regimen that will be much more effective.  As we all know, chemo doesn't always respond in the same way for all the people who are subjected to it.  I'm sure all of us who read your letter, as I see "73" have as of this Saturday morning, have said a prayer for you and your team of doctors.  We're all in this together and when one hurts, we all hurt, knowing that it could be us next to hear "bad news". 

Love Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

P.S.  By now, you've had that Friday "option discussion".  Keep us posted as to what your old meds were vs. the new ones. 

 

Jodisgoing180

Friday meeting happened. I am

Friday meeting happened. I am recurrence . Good news is my doctor is very optimistic, we are going for a clinical trial at MD Anderson. He is sending me, and I am one of 10 people he sends annually. We are at an affiliate hospital. He said 1 in 5 of reaching remission. Good chance of reaching stable disease. Am very hopeful. I set up a go fund me site to help with travel expenses. 

i caught the recurrence early!

LorettaMarshall

Jodi-Wishing U well on your trip & your "GoFundMe" endeavor!

 Hello Jodi –

 “That sounds like a great plan!”  Perhaps this “cloud” will have a “silver lining.”  It’s always good to find out that things are not quite as bad as they could have been.  Let us know when you get there, and what the clinical trial will be.  One thing I do know.  People in clinical trials get very close observation and testing.  And whatever you’re going to participate in, we hope it will turn out to be something that will prove so effective that it can be approved for general use real soon.  Those of us that have only been on traditional chemo are surely hoping that the people now undergoing immunotherapy clinical trials for our particular cancer will show great results.  They have worked great for some types of cancers, and that gives us hope that something will soon come our way. 

 Wishing you all the best in every way,

 Loretta

 Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

 P.S.  I’m putting a reference here for you.   I’m also going to post a link on a “separate topic” so that other people will be aware as well.  I don’t know that this is a well-publicized fact.  It is an organization that provides air travel, free of charge, for people who need treatment in another city and can’t afford the travel expenses.  I will post it in its entirety here for you as well.  While this particular benevolent organization seems to operate in the Northeastern part of the United States, it may not be something you could take advantage of, since I believe you life in Florida.  There might be something similar that is available in your area.   Perhaps it would be worth a call to see if they have a “sister service” similar to theirs in your neck of the woods.  Wouldn’t that be nice? 

1.  http://www.palservices.org/

 “Changing Lives, One Flight At A Time

 Patient AirLift Services arranges volunteer medical flights and free air transportation for needy individuals throughout the greater Northeast region, from Virginia to Maine, Ohio to Massachusetts.”

  2.  http://www.palservices.org/for-patients/

 “For Patients------Free Medical Flights & Patient Air Transportation

 The Patient AirLift Services’ network of volunteer pilots provide free medical flights and air transportation services, receiving no compensation, using their own or rented aircraft. No fees of any kind are charged for these services.

 Generally, the individuals who turn to PALS for air transportation are receiving diagnosis, medical treatment or follow-up for acute or chronic healthcare conditions and cannot afford commercial or charter flights.

 To qualify for a PALS flight, you must:

 1.      Have financial or compelling need. Our volunteer pilots donate their time, aircraft, and expenses at great cost. Please exhaust all other transport possibilities first.

 2.      Reside in the Northeastern U.S. and more than a two-hour car drive from treatment.

 3.      Provide notice at least 5 business days prior to desired flight date. PALS occasionally arranges a flight on short notice, but only in special circumstances.

 4.      Be medically stable to travel. Your physician or social worker must complete a Medical Release Form.

 5.      Be mobile. You must be able to sit upright in a standard aircraft seat, wear a standard seatbelt and get in and out of a plane with limited assistance.

 6.      Children over the age of two must be restrained in a DOT-approved aircraft seat or child restraint system.

 7.      Be able to fly in a small aircraft. PALS pilots fly non-pressurized general aviation aircraft with limited seating and cargo space. Our planes cannot accommodate a stretcher and are not air ambulances.

 8.      Be prepared for flight delays or cancellation. Ensure you can reschedule a medical appointment, or have alternate transportation available, in case of flight cancellation due to weather, pilot need or other circumstances.

 9.      Be responsible for your own medications.

 10.  Not have a communicable disease.

 11.  Provide supplemental oxygen and medical assistance, if required. Must be approved by the Department of Transportation.

 12.  Sign a waiver and release of liability form and provide Photo I.D.”

 _________________________________________________________________________________

Also Jodi, is this your entry on the “Go Fund Me” link?  It certainly matches all you’ve told us. 

 https://www.gofundme.com/jodisgoing180?ssid=740748267&pos=5&pc=

 “I'm Jodi Vetter.  I was diagnosed in January with Stage IV Ovarian Cancer.  I went through initial treatment at Sacred Heart Cancer Center in Pensacola, but the first line treatment did not kill all the cancer.  I'm being sent to Houston, TX for a clinical trial.  I live in Niceville, FL.  My husband, an Air Force guy, is currently stationed at Maxwell AFB, AL.  And the nearest relative lives in Orlando, FL.  I have two children-- Ryan and Sophie.  Ryan is severely autistic.  I'm raising money to help pay for trips to and from Houston (airline tickets/car travel and lodging), for my husband/mom to travel to help care for my kids, and any medical expenses that may not be covered by insurance.  

While my husband is employed, the sheer amount of travel for everyone involved will be expensive, and I have not been able to get a job.  It would mean the world to my family if I could get the best care available, and beat this cancer.”

__________________________________End of references____________________

 

Jodisgoing180

LorettaMarshall said:

Jodi-Wishing U well on your trip & your "GoFundMe" endeavor!

 Hello Jodi –

 “That sounds like a great plan!”  Perhaps this “cloud” will have a “silver lining.”  It’s always good to find out that things are not quite as bad as they could have been.  Let us know when you get there, and what the clinical trial will be.  One thing I do know.  People in clinical trials get very close observation and testing.  And whatever you’re going to participate in, we hope it will turn out to be something that will prove so effective that it can be approved for general use real soon.  Those of us that have only been on traditional chemo are surely hoping that the people now undergoing immunotherapy clinical trials for our particular cancer will show great results.  They have worked great for some types of cancers, and that gives us hope that something will soon come our way. 

 Wishing you all the best in every way,

 Loretta

 Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

 P.S.  I’m putting a reference here for you.   I’m also going to post a link on a “separate topic” so that other people will be aware as well.  I don’t know that this is a well-publicized fact.  It is an organization that provides air travel, free of charge, for people who need treatment in another city and can’t afford the travel expenses.  I will post it in its entirety here for you as well.  While this particular benevolent organization seems to operate in the Northeastern part of the United States, it may not be something you could take advantage of, since I believe you life in Florida.  There might be something similar that is available in your area.   Perhaps it would be worth a call to see if they have a “sister service” similar to theirs in your neck of the woods.  Wouldn’t that be nice? 

1.  http://www.palservices.org/

 “Changing Lives, One Flight At A Time

 Patient AirLift Services arranges volunteer medical flights and free air transportation for needy individuals throughout the greater Northeast region, from Virginia to Maine, Ohio to Massachusetts.”

  2.  http://www.palservices.org/for-patients/

 “For Patients------Free Medical Flights & Patient Air Transportation

 The Patient AirLift Services’ network of volunteer pilots provide free medical flights and air transportation services, receiving no compensation, using their own or rented aircraft. No fees of any kind are charged for these services.

 Generally, the individuals who turn to PALS for air transportation are receiving diagnosis, medical treatment or follow-up for acute or chronic healthcare conditions and cannot afford commercial or charter flights.

 To qualify for a PALS flight, you must:

 1.      Have financial or compelling need. Our volunteer pilots donate their time, aircraft, and expenses at great cost. Please exhaust all other transport possibilities first.

 2.      Reside in the Northeastern U.S. and more than a two-hour car drive from treatment.

 3.      Provide notice at least 5 business days prior to desired flight date. PALS occasionally arranges a flight on short notice, but only in special circumstances.

 4.      Be medically stable to travel. Your physician or social worker must complete a Medical Release Form.

 5.      Be mobile. You must be able to sit upright in a standard aircraft seat, wear a standard seatbelt and get in and out of a plane with limited assistance.

 6.      Children over the age of two must be restrained in a DOT-approved aircraft seat or child restraint system.

 7.      Be able to fly in a small aircraft. PALS pilots fly non-pressurized general aviation aircraft with limited seating and cargo space. Our planes cannot accommodate a stretcher and are not air ambulances.

 8.      Be prepared for flight delays or cancellation. Ensure you can reschedule a medical appointment, or have alternate transportation available, in case of flight cancellation due to weather, pilot need or other circumstances.

 9.      Be responsible for your own medications.

 10.  Not have a communicable disease.

 11.  Provide supplemental oxygen and medical assistance, if required. Must be approved by the Department of Transportation.

 12.  Sign a waiver and release of liability form and provide Photo I.D.”

 _________________________________________________________________________________

Also Jodi, is this your entry on the “Go Fund Me” link?  It certainly matches all you’ve told us. 

 https://www.gofundme.com/jodisgoing180?ssid=740748267&pos=5&pc=

 “I'm Jodi Vetter.  I was diagnosed in January with Stage IV Ovarian Cancer.  I went through initial treatment at Sacred Heart Cancer Center in Pensacola, but the first line treatment did not kill all the cancer.  I'm being sent to Houston, TX for a clinical trial.  I live in Niceville, FL.  My husband, an Air Force guy, is currently stationed at Maxwell AFB, AL.  And the nearest relative lives in Orlando, FL.  I have two children-- Ryan and Sophie.  Ryan is severely autistic.  I'm raising money to help pay for trips to and from Houston (airline tickets/car travel and lodging), for my husband/mom to travel to help care for my kids, and any medical expenses that may not be covered by insurance.  

While my husband is employed, the sheer amount of travel for everyone involved will be expensive, and I have not been able to get a job.  It would mean the world to my family if I could get the best care available, and beat this cancer.”

__________________________________End of references____________________

 

Travel Expenses

Thank-you for the information!  The biggest travel expense is for my family.  My husband is an active duty military member, and he is stationed at a different base than where I live, and I have two children (one who is severely autistic).  Right now, my mom is traveling to take care of him, but I may need to find alternate care while I'm at MD Anderson, because my husband probably will not be able to travel with me extensively.  I also am considering asking for friends to come with me (for a second set of eyes/ears), and I would have to pay their way.  My former classmates have been amazing-- my go fund me, is at around $1000 in under 24 hours!