ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
My sister is meeting most of the criteria for this form of cancer. Some testing still pending. I believe Lyme can weeken the immune system and allow cancer to grow, but does anyone have experience with this rare type of cancer? Where is the best place to seek treatment? Any help is appreciated?
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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I've always said to myself that if I got cancer, I would want to go to the Cancer Treatment Centers of America.
God bless her. I hope she can get the help she needs.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I have tried LDN but she hasn't. I will tell her about the Cancer Treatment Centers. On Youtube Mayo had a video and said they see one new case of this a week. About 1,100 people are diagnosed each year. It is more common in men and those over 65. I think having undiagnosed Lyme for 30 years has played a part. Thanks!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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Your sister is so fortunate to have your support! I have not heard of that type of cancer.
Is she also located in Perrysburg? Not so far away is Cleveland Clinic. It has a very high rating, in the top 10.
Other top cancer centers in the US are: M.D. Anderson, in Houston Memorial Sloan-Kettering, in New York Johns Hopkins, Baltimore Dana-Farber Cancer Institute, Boston
Where is she currently being tested? I highly recommend getting at least a second opinion.
Yes, Lyme can certainly weaken the immune system, making it easier for cancer to develop. Also, chronic inflammation (which chronic Lyme can cause) can also play a part.
Best wishes to you and your sister. Hoping she gets some answers soon.
Posts: 873 | From WA | Registered: Dec 2005
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
She is in Florida. Mayo is seeing one case a week and they are the only institution I have found so far that have lots of info on it.They are anti-Lyme so I'm not sure how that would work. Right now it appears to be in her spleen as it is swollen. She has all the blood work to support it but hasn't seen an oncologist yet. Thanks hopeful4!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
Here is a list of top centers in Florida: Cornerstone Cancer Center, Florida
H. Lee Moffitt Cancer Center
Shands Hospital at the University of Florida, Gainesville
Sylvester Comprehensive Cancer Center, Miami
Another suggestion is to contact the American Cancer Society, or the Lance Armstrong Foundation. Tell them the type of cancer that is suspected, and see if they know of a great place to contact.
You may also speak to them about the complications regarding Lyme disease and your concerns over finding the best treatment for your sister.
Also, try contacting the Cancer Treatment Centers that were mentioned by someone else here. Maybe they are more Lyme-friendly. They should be able to tell you what they know about their capability of treating Waldenstorm's as well.
There's a reason why people say they are "fighting" cancer. It is a fight! Don't ever give up! I've been there. I'm still here because I fought, and because of people like you who supported me and walked the journey with me. And there are many wonderful and dedicated doctors who do know what to do, and care about their patients...you can reach out and find them.
Another question: Is your sister being treated for lyme? Does she have an LLMD? If so, can her LLMD refer her to the right oncologist?
Sisters are special. Best wishes.
Posts: 873 | From WA | Registered: Dec 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
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Wow, I hope your sister finds the truth soon. I remember 6-8 yrs ago my spleen being so painful. It felt like I was a boxer and my opponent had taken it out on my spleen.
Of course my liver and gall bladder were also under attack. My PCP finally ordered ultrasound and the finding was all normal size and shape yada yada.
Well if that was normal then I must have been crazy because there was nothing normal feeling about them.
How can an organ hurt so bad but look normal?
I guess the same way I look normal, but nobody can see my pain unless I wince or limp or cry. It sucks when you must get used to pain, tx as you can or quit living life.
I hope your sister gets the best help there is.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Thanks everyone!
My sister sees an ILADS doc in Tampa. He has been very good to her since she started treatment. He was the one to pick up on all of her odd labwork and has ordered more testing. It is such a rare type of cancer that I thought I would put my feelers out for her. He may have a recommendation.
Hopeful4: You have a lot of good info that I will copy and paste in an email. Thank you!
Can you be in treatment at the same time for Lyme and cancer?
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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