Karmanos Cancer Institute, Detroit

Carolyns · 07-27-2009, 06:08 PM

Hi All,

I stopped my treatment last Thursday due to progression. I am trying really hard to get into the new TDM1 trial. The closest place offering it is in Detroit and I am in South Florida. This new trial will require visits on Day 1, 8 & 15 for the first 3 cycles. So, if I qualify, then I will need to go to Detroit 9 times within the first 2.5 months. I still work full time and I am a single mom head of household. Even so, I feel that this is my best shot "if" I can qualify for the trial.

I am going to try to contact the airlines to see if I can get a break on the airfare. I am not in bad financial shape, yet, so I can do this. It will be stressful to try to do my job and get my 10 year old son taken care of but this is such a great opportunity, "if" I can get in. I don't want to put the cart before the horse here... so I have to keep mentioning that before any of this matters I must first qualify to get into the study.

Has anyone been to this cancer institute? Any tips for me in any direction... I am just putting one foot in front of the other and hoping like heck that I can get in to the trial.

Thanks for all of your support!

Carolyn

Laurel · 07-27-2009, 06:43 PM

No information from my end, Carolyn, but I will pray that "if" becomes a solid "when."

Barbara H. · 07-27-2009, 07:10 PM

Hi Carolyn,
Dana Farber has not been mentioned as a trial site and I know that they are starting a new TDM1 trial. There will be other sites in the country. I would call them and find out about the new trial they are starting and where the other locations will be.

Best wishes,
Barbara H.

Mary Anne in TX · 07-27-2009, 07:12 PM

I'm praying that each little piece fits into the completion of the entire puzzle for you. You're thinking so good and I'll join you in believin' you'll get into the trial. ma

runtolive · 07-27-2009, 07:13 PM

their are tdm1 sites all over florida. at least 4 in central . to south florida.. irene in tampas site would be much closer. call them.. they can request to be in the trial you want..

or send me the info on which trial you are looking at..
i might be able to help..

run to live

Joe · 07-27-2009, 07:52 PM

http://clinicaltrials.gov/ct2/result...=t-dm1+florida

Regards
Joe

Carolyns · 07-27-2009, 08:13 PM

Hi All,

Thank you so much for your quick responses. The only TDM1 trial that I qualify for is: http://clinicaltrials.gov/ct2/show/N...rm=tdm1&rank=4

I have had more than 9 lines of treatment already...

It is only open in Idaho and Michigan. Other sites will open but I need to get back on treatment asap and can't afford to wait longer than necessary.

There will be centers that open the trial in South Florida so far none have it. I am checking daily. Any ideas or new information is appreciated.

Thanks, Carolyn

Ellie F · 07-28-2009, 04:14 AM

Hi Carolyns
I have no words of wisdom but just wanted to say I share your frustration about trials but for a different reason. I know that due to lack of availability in England it is likely I would have to travel to the States if I found one that would accept me.
That in itself is scary being in a country I do not know well. But I reassure myself that God will find me a way and that I would not be alone as I have all my her2 sisters for support and advice
Ellie

TerriC · 07-28-2009, 09:28 AM

Hi Carolyn:
My sister has dealt with at Karmanos in Detroit. It is an excellent hospital, the staff are wonderful. Send me a pm with any specific information you are looking for. Good luck.
Terri

Patb · 07-28-2009, 12:49 PM

I can only wish you the best of luck that everything
will fall into place and I pray that it will so you can
start the trial soon.
patb

Missyw · 07-29-2009, 11:53 AM

Hi Carolyn,

When I flew to Seattle (from DC) a couple of years ago Southwest Airlines had a medical free flight program. You could only get one free flight, but since I was traveling alone they let me have two. I think Continental also had a program, but I did not qualify. In addition, the American Cancer Society had a free/reduced fee hotel room program. I stayed in a number of very lovely Seattle hotels for free. The program depends on availablity and you can't pick your hotel so you have to be flexible.

Good luck!!
Missy

Carolyns · 07-29-2009, 03:48 PM

Hi All,

I got a call from the study nurse and she said that I have an appointment on the 6th. It was too late to call her back so I don't know when to fly in. I checked the prices and it seems like it will be over $300 if booked within the week. I hope to be able to plan further in advance if I get in the study and need to go back at least 9 times. I will call the airline to see if I can get a discount. It may sound silly but I HATE to tell my story to someone and ask for favors. When I hear me tell my own story it makes ME sad. Stage IV cancer going for a trial drug (then I start to cry), blahh, blahh, blahh... Please don't get me wrong I am sooo excited to have the chance to go to Michigan to see if I can get into this trial ... but my own personal story still makes me sad. I wish this cancer would just GO AWAY!

I will keep you posted. Thanks for your support.

Love, Hope, Peace, Carolyn

Joe · 07-29-2009, 04:12 PM

Carolyns,
I highly recommend Southwest Airlines. They fly into several cities in Florida and also Detroit.

The cities are:

Fort Lauderdale
Fort Meyers
Jacksonville
Orlando
Tampa Bay
and
West Palm beach

Christine and I use them whenever possible and their fares are most reasonable.

Where in Florida do you live?

Warmest Regards
Joe

Carolyns · 07-29-2009, 06:18 PM

Hi Joe,

I am in Hollywood Florida, near Ft. Lauderdale and I am also a big fan of Southwest Airlines. I am hoping to be able to find flights without connections to save time. I will continue to work as much as I can on the road and find baby sitters for my son while I am gone. It will be 9 trips to Detroit within 2.5 months - three times per month. I have almost all of my vacation time and sick time remaining so I can use that.

I hope I get in the trial and if I do this should be an interesting juggling act... talk about having a lot of balls in the air... but us single working Moms are used to that.

I have to keep my eye on the prize and getting into the trial is the most important thing. Everything else will take care of itself I must have faith.

Love, Hope, Peace, Carolyn

Lori R · 07-29-2009, 06:32 PM

Carolyn,
I am in awe and your aggressive pursuit of this treatment is an inspiration. The pieces are falling into place!!

I would think the first appointment will be the most stressful as the location, logistics etc. etc. are all new. After a couple of trips it will be a comforting routine.

Here's to getting into the trial and MUCH success.

Wishing you god's speed in this process.....Lori

Sheila · 07-30-2009, 06:02 AM

Carolyn
I too am humbled by your tenacity to get into this trial....shed those tears...you are fighting for your life...and if it gets you in at a reduced rate, that is great....I call it using the cancer card! Have you looked into angel flights...I know they transport people across country....it seems to mme that MichelleU on our site had angel fight transport her from Nebraska to Seattle for the Vaccine Trial...its worth a try!

Carolyns · 07-30-2009, 12:51 PM

Hi All,

Update, I bought my ticket on Delta to fly in and out on the same day. No discount. I seems as though I might have been able to get a discount if I was going to see me but not as the patient. The reservation's supervisor was nearly crying along with me because she was powerless to help me. She kept giving me names of discount websites and cancer organizations that might be able to help me... It almost felt like I needed to console her. Anyway, no cancer card with Delta unless it is to go to a funeral.

Now, I have done what I can do and I just have to rest and get on with my life until Thursday. Then after I get through Thursday's new patient in-take visit the clinical trial board will be the next step. On the following Tuesday they meet to decide if I get in the trial. So I hav done all I can do for now.

My mind is racing... I am excited to have come this far.

Thanks for all of your support!

Carolyn

Cathya · 07-31-2009, 03:50 PM

Carolyn;

Sheila is correct. Angel Flights will fly you to your destination free. I just recommended it to a friend's daughter in Canada and they are taking her to the Mayo with no charge. Do call them. Their website is www.angelflight.com

All the best,

Cathy

tricia keegan · 07-31-2009, 04:22 PM

Carolyn, I don't live in the States so not sure how this works but Maryanne (madebois) had some good discounts (or free) with the Angel airline I think it's called to her tx.
maybe this could help you??

ElaineM · 08-01-2009, 12:39 PM

Check with your local American Cancer Society or see if you can get a American Cancer Society brochure. There is a program listed in the brochure about discounted airline fares and reasonable hotel charges for cancer patients who have to travel somewhere for treatment.
Also your doctor's office might have brochures about corporate jets that help get patients around at low cost.
If I still have the brochure I will look it up, but I don't remember where I put it---------probably in my pile of unfinished business. Maybe the American Cancer Society website might have a link where you can get information on that.
Good luck. I hope you get into the trial. Take care. Keep putting one foot in front of the other. I have my fingers crossed for you.