Member Since: July 27, 2006
Last Login: August 17, 2008
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Connecting With Others Who Have a Similar Diagnosis + Recurrence and Metastatic Disease, Created: Aug 17, 2008 01:54 am
Is anyone getting help from Komen?IBCspouse...I opted for the same plan as your wife. Couldn't afford a wig, until given a gift certificate by family, by which time I was done with Chemo. I asked the social worker about donation of hair from volunteers and she said that there are organizations that gladly accept donations (Locks of Love)but that the wigs made are reserved for children. Don't know if this is absolutely true-so am interested in what others know. |
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Connecting With Others Who Have a Similar Diagnosis + Recurrence and Metastatic Disease, Created: Aug 16, 2008 12:03 am
Is anyone getting help from Komen?I had complications after surgery and then other un-cancer related health issues and was never able to return to work as an LPN even though I had only planned to be off for 2 weeks after my mast. I had insurance through my employer for 1 year, thanks to accumulated sick leave, vacation time and donation of time from work mates.After 1 year, I had to officially resign. I qualified for SSDI, but not medicare ( which takes a couple of years) My health premiums were $600.00 per month plus co-pays, which used up my income from SSDI for a year.The Komen foundation did give me a grant for "rent" of $1000.00. I had gone to a Social Worker because I felt so overwhelmed and burdened financially and was literally living on credit cards. It never occured to me that any funds would be offered. That thousand dollars was really appreciated, but I too have wondered if many women actually get enough financial help to be able to get the care they need or lift the burden much. I have 5 daughters and a niece that have participated in the 3 Day numerous times and together have raised 10s of thousands for the Komen Foundation. I too would like to know more about how the money is divided up and think this should be researched a little more and the results posted as I am sure it is Public Info. I will see what I can find out...unless someone reading this already has the info. |
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Connecting With Others Who Have a Similar Diagnosis + IDC (Invasive Ductal Carcinoma), Created: Aug 11, 2008 11:51 pm
vascular invasionI was stage III IDC 9/2004 with 30+ positive nodes and extreme vascular invasion. I am doing GREAT! Have had other serious health issues in the past year, but NOT BC! I am still NED except for lymphedema. Prepare for the worst but hope and plan for the best. BC can sometimes make us stronger in other ways and is just one of the side trips that life sometimes takes. |
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Recovery, Renewal, & Hope + Moving Beyond Cancer, Created: Aug 10, 2008 06:12 pm
John EdwardsI am usually not vocal about politics even though I was an Edwards silent supporter. However, this whole thing just makes me sick! I try to be positive and look for the GOOD in people and situations.But I believe that Americans as a group are evolving better CHARACTER over the generations and years and that we need a President and Politicians who also have GOOD Character. Be they Repiblician, Democrat or other...we need someone in the white house with the INWARD motivation to do what is right, even when no-one is looking. Yes, many presidents have been unfaitful to their wives and still been respected presidents. But, I believe that our own expectations and standards are higher now. The general public is more aware and participatory. I am so sad for EE, but also bewildered. I think I agree with Member of the Club. When people of high political or economic standing are willing to "cover and/ or pretend" in order to not loose their "stuff" (material or otherwise) it is a slap in the face to us all. My heart aches for her and it makes me wonder what I would have done in her shoes? Just a guess that this was not the 1st time, the only time or the last time. But now she undoubtly knows his character. And, what does it matter if he did or did not father a child. The point is that he was deceitful. The poor child will have "issues" no matter who her father is, because of who her mother is! Run EE...run.... I feel the same for Hillary. That is my 2 cents! |
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Connecting With Others Who Have a Similar Diagnosis + IBC (Inflammatory Breast Cancer), Created: Jul 15, 2008 12:30 am
Biopsy Results: Inflammation. Is this good?My case sounds a lot like yours as far as symptoms. PAIN, reddnes, swelling with flu like symptoms. Neg mammogram. Neg ultrasound. Punch biopsy showed only inflammation. Antibiotics didn't help. I pursued for 3 months. Was treated like a "nut case". Finally had an MRI which showed 1 "tiny, tiny" tumor. However I had 31 positive lymph nodes!!!! They say it was IDC but I still think it was IBC and rad onc did rads as if that were so. Please be persistant and take care. I am now 3.5 yrs NED. |
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Tests, Treatments & Side Effects + Radiation Therapy - Before, During and After, Created: Jul 15, 2008 12:14 am
Skin Cream during radiationThis will sound crazy and would not be recommended by MDs. My burns were horrible! Being a retired nurse, I KNOW I broke every rule in "the book", but I tried doing what I was told...which was to use Aquafor or keep the area clean and dry. Phooy! I had exit burns on my neck and back and open, oozing raw blisters from the neck to belly in front and under my arms and down my sides for 3 months!!! Burns were so bad that they had to stop radiation 1 treatmeant earlier than plan. I made a concotion of the Green Banana Boat Sunburn relief gel(poured out of spray bottle), a big glob of antibiotic ointment and a gob of Diaperine Baby Diaper Ointment. Stired it up in a clean jar and slathered over my burns (took Vicodan or tylenol 1/2 hr before.Covered each open area with a vaseline dressing that I got from radiation onc.) Then wore a clean camisole and let it stick to me.. I had 3 camisoles for the purpose that I washed daily with a little bleach in the wash and then dried them in the dryer. Pain was unbelievable for the 1st 5 min after application but it always got better because the Banana Boat had a numbing agent. Never got any infection and eventually healed up, much to my surprise. Its been 3 1/2 years and I hardly even have scars! I know my Onc would have "locked" me up if he'd known what I was doing! Billiegirl
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Not Diagnosed but Concerned + Not Diagnosed but Worried, Created: Jul 14, 2008 12:50 am
Mastitis or Breast CancerPlease insist on a Breast MRI immediately. I was told for 3 months that I had Mastitis / Dermatitis. Surgeon finally did a punch biopsy and it just showed inflammation, but no malignant cells. Antibiotics didn't help. Mammo was negative.Ultrasound was also negative! I was to Dr 1-2X week for 3 months+. I KNEW it was Cancer from the "get go". I felt sick and the pain was horirble! Dr acted as if I was being abnoxious.Said Breast Cancer doesn't cause those kind of symptoms!!! Finally got a friend who was an OB/GYN to order MRI( I worked as a nurse)By the time I had surgery I was stage 3C IDC with 31 positive lymph nodes.Had mastectomy, chemo and rads. Please Don't give up until you get answers. I hope it is not Breast Cancer...but better to be proved wrong than to over-look until it is too late. Good Luck, Billie
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Tests, Treatments & Side Effects + Help Me Get Through Treatment, Created: Jun 8, 2008 01:34 am
Read This if You Have Dense BreastsME Too! Maybe there should be a column for Dense Breasts! I was actually physically symptomatic ( swollen breast, red, heavy,warm & painful with flu-like symptoms) I thought I had IBC. Mammo and US were neg other than showing dense breasts. I was back and forth between family Dr & surgeon 1 or 2x week for 2 months! Had antibiotics with no relief. I was sure I had BC from the "get go" but the Dr acted like I was a nut case. Finally got an OB/GYN to order an MRI. Surgeon reluctantly did a punch bx-which only showed "dermatitis" MRI did find 1.5 cm tumor. I opted for Mast and had 30+ positive nodes!!!!! On a positive note, I have my 4 yr dx anniversary coming up. |
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Connecting With Others Who Have a Similar Diagnosis + Recurrence and Metastatic Disease, Created: May 9, 2008 04:12 pm
friend with collapsed T8I Had that exact surgery 10/07!! Your friend is lucky to have your support. This surgery is very BIG deal.Please encourage her to not be discouraged. I will have your FRIEND to my prayers. Billie |
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Day to Day Matters + Research, News, and Study Results, Created: Apr 14, 2008 01:02 am
vaccine for her2-nue galsI was dx 9/04 with Very Aggressive IDC stage III with 31 positive nodes that were all totally matted and overtaken with cancer. My BC was very physically symptomatic for 3 months before that but I was told by several doctors that it was "DERMATITIS"! I didn't believe them and was persistant in continuing to seek help. In my case it presented like IBC...with pain, redness, swelling.Nothing showed up on my mammogram besides skin thickening-but no lump (until a very small one was found when they finally agreed to do an MRI). After mast, chemo, rads, herceptin I was given 2 or 3 TRIAL Vaccines (can't remember how many-just know it was more than1) through study with the U of W Medical Center in Seattle. Currently I am still NED!
Yea. I have seen others with less aggressive pathology not do so well. Some who joined BC.org after me and who originally were dx at lower stage have passed me by to become "Angels" already. I sure hope this VACCINE does turn out to be the answer, although it currently is only being tried on HER2NEU+ women that have already been treated for breast cancer...not as a treatment, but to see if it prevents a recurrance or prolongs life.This vaccine is NOT yet expected to be used to prevent the 1st breast cancer in a women, for instance like most vaccines we hear about.I would like to hear from others who have been in the TRIAL |
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Not Diagnosed but Concerned + Not Diagnosed but Worried, Created: Mar 22, 2008 01:06 am
Obese of morbidly obese?I wish you were here so I could wrap my arms around you and give you a hug and take care of you for a couple of weeks (at least)!
I am a VERY large woman (250+).Had a mastectomy, rads, chemo in 2004. My weight has been a factor in options for tests & treatments, but NEVER in the way I have been treated by medical persons.Although it does make surgery and after care more of a challenge from the surgeons and nurses perspective.Everyone has always been kind and respectful to me. I had multiple medical issues before this started in 2004 and then they found 30+ positive nodes during surgery. I was devestated and terrified (sure I was a goner, but I am still here plugging along, 3 years later). All you can do is take 1 day at a time and try to think of it as an adventure.I would have a PLAN B in case you need more time.Put yourself 1st for a while. The rest of the world still goes on. When you are in the hospital you can ask to meet with a social worker. I did so, and was offered a grant from the Susan G Komen Foundation to help with rent while I was off of work. Everything just worked out even though it wasn't what I had expected. I too had planned 1 week, but it has been 3 years and I was never able to go back but get SSDI. If I had known the future a week before surgery I would have FREAKED...but it has all worked out and i am happier and more content than EVER in my life and feel like I can handle anything God has in store for me. |
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Tests, Treatments & Side Effects + Help Me Get Through Treatment, Created: Jul 19, 2007 06:35 pm
insomniaI never in my life suffered with insomnia until treatment.Insomnia started with chemo and stayed with me! I was dx 9/04 and still have insomnia almost every night. You name the therapy,I've tried it! Diet restrictions, natural supplements, sleeping pills OTC and RX, melatonin, hypnosis. Now I just routinely take an herbal sleep prep and 2 Tylenol PM 30 min before bed. Still takes me about 1 hr to fall asleep-however, I usually can sleep well close to morning and then I have to FORCE myself to get up before 8 or 9. Used to be that all I had to do if I couldn't sleep was to start reading-now I can stay up ALL night and read! Its the pitts, isn't it?
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Posted in:
Recovery, Renewal, & Hope + Moving Beyond Cancer, Created: Jul 19, 2007 06:19 pm
OT/ Who does MySpace? |
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Tests, Treatments & Side Effects + Lymphedema After Surgery, Created: Jan 4, 2007 11:54 am
washing/ironing bandagesI bought a yard of plain fleece at the fabric store and cut it into 4" wide strips so they are 4" x 36". Works great instead of cotton under-wrap and it washes nicely in a lingerie bag in both washer and dryer. I only wash outer night wraps every couple of months.
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