Update on My Health Situation
By claudia413
@claudia413 (4280)
United States
September 6, 2007 7:10pm CST
Some of you may have read my discussion on Inflammatory Breast Cancer (IBC). Those of you who haven't read it ought to at least google it for information.
After two months of fighting doctors and insurance companies, I will finally get my first chemo treatment tomorrow. So, if I'm not around for a few days, please understand why.
A few great videos on IBC that you can check out are at www.komotv.com/ibc. This is a rare and highly aggressive form of breast cancer and is treated with chemo BEFORE any surgery is done. Lucky me!
I'll be happy to give anyone information on IBC as even my own doctor had not heard of it...thus the delay in getting diagnosed. I joined a great support group, and they have a wealth of information...sometimes even more than your doctors. LOL.
6 people like this
11 responses
@craftcatcher (3699)
• United States
7 Sep 07
I'm so glad you are finally going to get the treatments you need. I hope it goes easy on you. It's great you found a support group, it's so important to have people you can relate to in health matters. I have Fibromyalgia and it's something that is so difficult to explain but you always feel the need to complain about. Constant complaining to my hubby gets on his nerves so I limit it as much as I can, so griping to people who understand is wonderful for a change.
Keep us up to date on your progress when you feel up to it Claudia. Best wishes for an easy treatment and speedy recovery. :D
@claudia413 (4280)
• United States
9 Sep 07
Two days after my first chemo treatment, and I'm still feeling fine. No real nausea, but I did take a nap on Friday and Saturday and will probably take one today also. The support group can be a lifesaver in more ways than one. I know exactly what you mean.
My prayers are with you also.
1 person likes this
@cblackink (969)
• United States
22 Sep 07
Your support group has more information than your doctors? Gee, what a shock! I have a hard time in believing what comes out of the mouths of doctors in many cases, considering everything I know about my own problems and about alternative healing. Good luck with your chemo and God Bless.
1 person likes this
@claudia413 (4280)
• United States
22 Sep 07
I know what you mean...LOL. I'm educating the medical profession as I go along, and I'm not kidding either. All of the people in the support group either have IBC or are related or friends with someone who does/did have it. They are an absolutely amazing group, with many of them sounding like doctors when they post. But they are also able to make us newbies understand what our pathology report says and what our other test results mean. They take the time to explain, where the doctors don't.
@LooneyToons (383)
• United States
16 Sep 07
I wish you the best Claudia. I came here to check out your update to see how you are. Know that I am praying for you. XOXOXXOXOX
1 person likes this
@claudia413 (4280)
• United States
16 Sep 07
Thanks so much for stopping by. You've been missed. I sure do appreciate any and all prayers.
@worldwise1 (14885)
• United States
7 Sep 07
Good for you, claudia, in doing what has to be done. I applaud you and want you to know that my thoughts and prayers will be with you for the duration. It's nice of you to want to get the word out about this illness also. Your attitude is so positive that I have no doubt you can lick this thing.(:
1 person likes this
@claudia413 (4280)
• United States
9 Sep 07
Thanks for the kind words. I'm determined to stay positive in my thoughts, work hard at getting to be NED (no evidence of disease) and will continue to get the word out about IBC.
You are also in my thoughts and prayers.
1 person likes this
@pyewacket (43903)
• United States
7 Sep 07
My prayers go with you for your healing claudia413...Its wonderful in a way that you were able to discover your cancer and suspected it even before your doctors did, and was provided with the information about IBC. And yes, of course we'll understand if your not around for awhile--you just concentrate on the healing process ((((hugs)))
1 person likes this
@claudia413 (4280)
• United States
7 Sep 07
Pyewacket, thanks so much for your prayers. It IS wonderful that I was able to discover exactly what my problem was -- thanks to the internet. I will be trying to concentrate on the healing process. (((hugs))) to you also.
1 person likes this
@theprogamer (10534)
• United States
7 Sep 07
My prayers, thoughts, hopes and dreams to you Claudia. I hope you can overcome, I really want you to. Keep at it and fight on. Be sure to take good care of yourself too, please.
1 person likes this
@claudia413 (4280)
• United States
7 Sep 07
Thanks so much for the kind words. I'm a very stubborn Swede, very positive in my outlook on life, love to laugh at life, and a real fighter. I want to receive the designation "NED" one day, which means "No Evidence of Disease"...that's what you get with IBC, not cured. The women in my support group laughing refer to NED as "no expiration date". I love it. They do give me some good laughs at times, and laughter is the best medicine. I've got a good support group at home also...my hubby and my cousin can't be beat.
1 person likes this
@claudia413 (4280)
• United States
7 Sep 07
It sure is an awesome video. Thanks so much for your prayers.
1 person likes this
@Marie2473 (8512)
• Sweden
13 Jun 08
Been gone for a while as you might have noticed adn I see that i have missed some important things.. how did it all go? i really have to get updated on your discussions now...
@Perry2007 (2229)
• Philippines
11 Nov 07
You must be up and above your health by now. Congratulations. I found courage in you. Have the best of your health and God bless.
@Modestah (11179)
• United States
28 Jan 08
oh claudia, I am so glad that you had posted this and it likely helped spare many the same time and anguish that you were subjected to through the general ignorance of this newly found often misdiagnosed cancer.
It has been such a long time since I have "seen" you on mylot, I do hope that you have overcome this dreadful disease
@claudia413 (4280)
• United States
13 Jun 08
I have been away from MyLot for a long time now, but I do have good news to report. After almost 7 months of chemo treatments, losing my hair and having to wear a wig, then having a modified radical mastectomy on my right side, I can now say that I am NED (no evidence of disease) at this point in my treatment. Hooray!
Next week I start my radiation treatments (daily treatments for 6-1/2 weeks). Then I will have a battery of tests to determine where I stand with IBC...hoping to stay NED for a long time, if not forever.
Being an advocate for IBC has taught me a lot, and I hope I've taught a lot of medical professionals and general public to recognize IBC when it rears its ugly head. It's a long and never-ending process and never ceases to amaze me.
