update - what to do?

[Joan M]

Pam,

I'm sorry to hear that your tumors markers have gone up and that you're dealing with severe mouth sores.

I think your onc did the right thing taking you off everything for a few weeks so that you can regroup physically and emotionally. I also agree with what he said about going either route with the other route being available. The scans will help in making your choice.

I'm glad you have a few choices.

Joan

[Carolyns]

Pam - Chrisy is right. I flew round trip from Florida to Detroit every week for 12 weeks in the study. Prior to that I had to go to Detroit about 6 times to get in the study. In addition to the airfare I paid for daily meals about $60 per trip and transfers back and forth from the airport to the hospital via private car which were $120 per trip. After getting "locked down" in the hospital (long really bad story) over a weekend I never made the trip alone again... so I paid my airline ticket and one for a friend to go with me.

I don't think price alone should make your decision. First of all I am sure that you could do it for much less money than I did. It was just a shock to me what I ended up spending because of all of the complications I encountered.... that was my experience and doesn't have to be yours.

I know you will make the right decision based on what you learn. TDM1 is a great drug and I hope that you decide based on all of the information you gather and not my own personal experience / comments on the cost... there was a bunch that went into those numbers as I tried to explain.

Love, Hope, Peace, Carolyn

[Chelee]

Pam, I'm so sorry to hear your current trt wasn't working...darn it! I sure hope all your side affects clear up quickly. Those mouth sores are the worse...you poor thing...my heart really goes out to you.

It's so hard to make these kinds of decisions on "what next"? But once you get the results back from your scans I have a feeling you will know what to do at that time. I have to agree with Chrisy about the T-DM1. It's really done great in women that have been thru multiple therapies when all else has failed. As far as T-DM1 the distance alone would be very hard on you. I was having a difficult time just thinking about going two hrs each way--that is nothing compared to what your dealing with. I will keep you in my thoughts and prayers...and part of that prayer will be for a "new" site with T-DM1 will pop up some where close to you soon. Let us know how things go. Hang in there...I know it's not easy. Sending you positive thoughts and a really BIG hug!

Chelee

[Chelee]

Pam, I just wanted to add one more thing in case you do get a get a chance or find a way to try T-DM1. I went back to read what Irene said about T-DM1 as I remembered it worked so well for her. (I do agree it might not be a magic bullet for everyone...but so far it seems to have worked really well on most everyone I've heard about.) Here is one paragraph from Irene's post.
__________________________________________________ __
On herceptin/dmi trial

>>>>Since I had my hip surgery, my Bilirubin count has elevated to over 3 (norm being 0.2- 1.2 according to Quest Labs ) It has come down to 2.8 and as low as 2.4 last Monday) The problem is that I may be kicked out of the study because they do not want a liver failure on there hands. I can certainly understand their point, but we are all so dissapointed since I have been NED now for about the last 6 months. I have never responded this well on any drug I have been on.<<<<

I found this sentence in another post from Irene about T-DM1.
>>>>This has been working miracles on me and would like to be given another chance.<<<<
____________________________________________
As you know Irene had been on so many chemo regimens since 1996 thur 2008--so I think that says alot coming from her. For her to say she has never responded that well to any chemo is exciting to me & gives me so much hope for all of us women that need this drug. I just wish they would hurry up so those of us that need it don't have to fly across the country and go broke trying to get to a trial site. I wish you didn't have to deal with any of this. Hang in there.

Chelee

[Nancy L]

Pam

I found this information on the Komen site and you may find one of these resources helpful. Since the info was last updated in 2010, it should be current phone numbers, etc. I know this is a stressful time for you and I hope you can get the best treatment possible for this recurrence. You shouldn't have to also worry about the logistics of getting the right care. I hate this disease and all the human suffering it has brought to so many.

Hugs, Nancy



Transportation and Lodging Assistance

Transportation Assistance

Local Transportation

Some people living with cancer find it hard to get to and from their treatments. If you need local transportation assistance, the American Cancer Society has a program called "Road to Recovery”. For more information, call 800-ACS-2345 (800-227-2345) or visit their website at www.cancer.org.
CancerCare's AVONCares program also helps with transportation to and from treatment. Call CancerCare at 800-813-HOPE (800-813-4673) or visit their website at www.cancercare.org for details.
City, county and state agencies can also arrange for low-cost or free local transportation for people who are disabled. For more information about these services, contact your city, county or state transportation department. The social work and patient relations departments at your hospital may also have information on transportation programs.
Long-Distance Transportation

If you have to travel far from home to get treatment, there are several organizations that can help.
Air Charity Network
A group of similar organizations that offer air travel to people living with cancer and their caregivers.
(877) 621-7177
Corporate Angel Network
Uses empty seats on corporate aircraft to help people living with cancer reach treatment centers.
(866) 328-1313
Lifeline Pilots
Offers air travel to treatment centers for people living with cancer and their caregivers.
(800) 822-7972
Mercy Medical Airlift
Offers air travel to treatment centers for people living with cancer and their caregivers.
(800) 296-1217
National Patient Air Travel HELPLINE
Offers air travel to treatment centers for people living with cancer and their caregivers.
(800) 296-1217
Raquel’s Wings for Life
Offers air travel to treatment centers for people living with cancer and their caregivers.
(940) 627-1050
Lodging Assistance

If your hospital or treatment center is far from home, there may be times when you and/or your family need to find overnight lodging. Many hospitals and treatment centers can arrange a discounted rate at a nearby hotel or motel for you and/or your family. The American Cancer Society has a number of Hope Lodges that provide lodging for families during cancer treatments. To find out if there is a Hope Lodge near your hospital or treatment center, visit the American Cancer Society website or call 800-ACS-2345 (800-227-2345).
Updated 01/27/10