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Joined: Apr 2005
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Kim, what a kind and caring post- it's obvious that "you've been there-done that" smile Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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Its heartbreaking to hear such critical comments aimed at such an obviously caring and loving person who is doing her best at caregiving. I thought the boards were intended to offer guidance and support. Hang in there Delia and Charlie!! -Susan

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Susan, that is exactly what this board is for AND what it accomplishes. Gary has been here for years, helping others and guiding posters along the right path. You have four posts, please don't criticize him. What he posted was absolutely true, and sometimes the truth hurts.


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
Joined: Apr 2005
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JAM Offline
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Dear Susan, I think you missed the point! When Delia cut that patch in 1\2, she ignored the Drug Manufacturer's very specific WARNING on how to use the patch. She endangered her "patient's" life in the process. Doesn't matter if she did it "unwittingly" on this web site, because OCF is dedicated to dispensing the BEST knowledge available to help cancer patients and caregivers. So her mistake needed to be addressed Loud and Clear in my opinion. If some nurse in a hospital or in Home Heath Care had done that, there would be Hell to Pay eek Gary and others here are trying [over and over again] to disseminate the BEST information possible on the best possible care. I, for one, am so appreciative of the good advice and information I have gotten here. I have ask many questions over the last 18 months and have always gotten good answers. These answers have allowed me to push John's Doc's some, to help eleminate some of his pain and to be a better caregiver. No one is trying to be ugly here- just trying to get the best information out. I have read many posts on other "Cancer Websites" and none of them come close to imparting the real knowlegde athat is available hee. Sometimes that knowledge seems harsh, but it is reality based-kinda like real life! I count my blessings daily for the people on OCF. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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Joined: Feb 2005
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I agree the comments weren't critical of Delia. But what she did (although it might seem sensible and of course she did it with the best of intentions) could have had some VERY bad consequences and it was really important for GARY to put that in big, visible writing!

Information on OCF has been a godsend to me too. The quality of the information available here is more important to me than the careulness of the wording--although in general I think people here are very careful and kind in the way they word posts as well.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Joined: Dec 2003
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Patient Advocate (old timer, 2000 posts)
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One important thing to always remember and keep in front of us throughout this battle is to arm yourself with all the knowledge that will help you as a patient or caregiver to make it through this horrible disease and recovery process. This means we have a tremendous responsibility to know the inherent dangers in all medications and combinations of medications that could prove fatal. As both a caregiver and a patient/survivor, the ony areas we can't be as dilligent as we want is in the sleep and relaxation processes.

I know, Delia, your emotions are raw from all you have been through. That is expected. Try hard to not be defensive but take the time to read all literature on all medications and any changes to what is prescribed is always approved by the trained medical professionals. Keep a list of all medications and review them with the most highly trained medication expert, the Pharmacist. They can tell you anything you need to know about interactions and risks of medication. They have spent countless hours becoming experts.

To end on my usual attempts at humor I have to relay a story. I am about as anal as my wife and between us we read all we have to and memorize way more than we need. I was one of the "lucky" ones that got a bad batch of patches that were recalled. There was a problem with the time release agent that meters out the dose. In one box alone, I got severely burned from the patch and complained it didn't feel like it was working because I hurt so much and fell down several times complaining because my eyes crossed and everything was just spinning. I was so relieved to hear it was the patches when I got a letter from the manufacturer that I had received one of the suspect batches. I got about a 50 page FDA questionaire but I was too medicated to comprehend what the hell they were asking me.

Great to hear from you Kim, by the way! I hope all is well with you and Dave.

Take care, get thicker skin and be thorough in all you do.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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