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So quiet here now...

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

If you're new here and need help... please PM me. If you're lurking... don't be afraid. We can't help you if we don't know you're here. Time is of the essence with EC! I know... my Dad was diagnosed Stage IV.

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Bringing your post to the top. No response to your post for two days, shows just how quite it is. It's sad, but we are still needed on this site. Even though we're trying our wings on other sites, just means more people can be reached. The ones that are gone wishes us well. They want this site to survive. So many of them came here seeking help and got it. By supporting other sites as well, means we can get the word out, that EC is a killer, but there is hope.

Is there any hope CSN will reverse their decisions ? I hope so!

Sandra

GigiJR
Posts: 4
Joined: Sep 2012

Just found out a dear friend has Stage IV EC. No TMN information available yet. Would appreciate recommendations for a cancer center preferably near Eastern North Carolina. Also any ideas of things I can do for him and his family that would be more helpful instead of saying 'let us know what you need'. Am giving them time and space but would like to do more to help and provide some comfort if possible without getting in the way.

Thanks,
Gigi

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

I messaged you "privately."

jaycc
Posts: 130
Joined: Jul 2012

I have someone in Georgia Stage IV, would you like that info ?

GigiJR
Posts: 4
Joined: Sep 2012

Yes, please. Thank you!

jaycc
Posts: 130
Joined: Jul 2012

Gigi,
I sent you in an email Marcus's phone # and email, he is Stage IV, 9 year survivor.

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

I went to Emory , with very good results. Cancer center of America just opened in Newnan Ga. This is near Atlanta. I don't know anything about it, but it takes advanced, hard to treat patients. If I was stage four, I would look into it. Has anyone on here had any experience with this hospital? I know they have several around the country.
Sandra

ptom
Posts: 33
Joined: Jun 2012

Sandy,

The Federal Trade Commission fined them in the late 1990's for false advertising. The CTCA could not prove their "superior success rates". If their treatment protocols were that good I would think all of the major cancer centers would be doing the same thing. I don't know if they have cleaned up their act since they were fined but I sure wouldn't go there. I've heard too many stories about how they will treat you like royalty until your money runs out and then you are on your own.

Here is a link to the FTC report. (You'll have to cut and paste it because I don't know how to set it up to open automatically.)

http://www.ftc.gov/opa/1996/03/cancer.shtm

ptom

ellamenno's picture
ellamenno
Posts: 142
Joined: Aug 2010

CTCA have not earned NCI Comprehensive Cancer Center certification.

I think that "Buyer Beware" may apply here.

Please research before trusting your care to any cancer treatment facility.

Peace, Laurie

NLMCEM
Posts: 52
Joined: Aug 2010

Had a relative who went to Cancer treatment of America in Philadelphia when no other hospital could or would help him any more. He was at the UPMC hospital where I know many here had great results finally told him there was nothing else they could do for him. The Cancer treatment of America paid all his expenses hotel,food,travel and he paid nothing for his treatments. He was there off and on from 2011 till this August in 2012 he did pass away from complications. He was given another year of many good days till he had his set back. Remember though this was his last resort.

bawa
Posts: 40
Joined: Sep 2012

My younger sister (33) is suffering from EC since June 26th this year. She was diagnosed with met in liver, brain and lungs. She is in a lot of pain and we thought if we could try CTCA as Stanford had given her two months and had given up. We thought at least CTCA will combine alternative and mainstream as they claimed. Yes they are very good in comforting you, very good nursing staff and facility. But the problem is that all the alternativ stuff that they claim is namesake. They use these alternative stuff in some cases they deem fit to be used on. Otherwise they do normal chemo and nothing new or diff. So all the claims they make are useless. We flew all the way to Arizona from San Jose in America for my sis. She was in a lot of pain and we los ta week due to these false promises. bad experience.

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

Did you try?

paul61's picture
paul61
Posts: 1105
Joined: Apr 2010

There are three NCI certified Cancer Centers relatively close to eastern North Carolina. One I am familiar with is Hollings Cancer Center at University of South Carolina in Charleston, South Carolina. I had my esophagectomy surgery done there. The second is Emory Cancer Center in Atlanta, Georgia. I have heard both good things and not so good things about Emory. I think in many cases treatment outcome tends to influence how people feel about a specific hospital but Emory does have an excellent reputation.

Click Here for information about Hollings Cancer Center

Click Here for information about Emory Cancer Center

There is of course Duke Cancer Center in Durham, North Carolina

Click Here for information about Duke Cancer Center

Things that can help include:
- Helping with errands like groceries and trips to the drug store
- Offering to help clean the house or do yard work if that is required
- Just being available to listen without pushing them to do anything specific
- Offer to provide transportation to treatments
- Doing the research you are dong to provide them with information they may not be aware of

He is very lucky to have a friend that can support him during this difficult time.

Best Regards,

Paul Adams
Grand Blanc, Michigan

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

GigiJR
Posts: 4
Joined: Sep 2012

Thank you Paul. Much appreciated.

Gigi

NLMCEM
Posts: 52
Joined: Aug 2010

sharing your helpful links with others thank you so much for sharing what you know.

topaz1947
Posts: 24
Joined: Mar 2011

I went to Duke in Durham for my surgery and treatment. My team of drs. was super. The care I have received is super. They go well above just treating the disease. I would not hesitate for a moment to go there again. Take care and God bless.

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Thanks Ptom and Laurie, It seems I had heard a similar story about them. All definately need to do their home work before believe the ads on TV.
Sandra

GigiJR
Posts: 4
Joined: Sep 2012

Thank you all. Headed to Duke next week.

-Gigi

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

Gigi, just checking in on you. What's the status? Keep us posted!

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

Same message... if you need help, pm me!

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