Individual To-Do & Remember list/calendar

sas-schatzi · December 2012

This topic is for instructions on how to create your own information storage place. I have a private topic box and a public topic box. Wish I had them from day one. Hope this is useful to you.

How to use: 2 methods

First method: Read the instructions and do it. Type message in topic box:" Hi, this is my own personal storage space, I would appreciate it that no one posts here. Thanks.(or whatever you decide)"

Second method

1. Copy instructions from this box by highlighting the section and then click on clrl -C,

2. Then go to the top of this page and click on " All topic>Forum: Recommend your resources" click on new topic--title topic by your screen name & type title i.e. "My personal storage area, Sas-Schatzi".

3.Then put the cursor in box and hit ctrl-v to paste instructions in box. After you have created your own topic box you can delete the instructions. This step is only here if you aren't used to creating your own topics.

4. From drop down box at bottom click on "Add to your Favorites without email updates".

5. First post : Hi, this is my own personal storage space, I would appreciate it that no one posts here. Thanks.(or whatever you decide).

6. For complete privacy (or near privacy) always click on "EDIT" and re-enter your first post. Continue using the same first post for all entries. Within a day the topic will fade away into the computer netherworld.

7. If you don't care about privacy post at will.

sas-schatzi · December 2012

This topic is for instructions on how to create your own information storage place. I have a private topic box and a public topic box. Wish I had them from day one. Hope this is useful to you.

How to use: 2 methods

First method: Read the instructions and do it. Type message in topic box:" Hi, this is my own personal storage space, I would appreciate it that no one posts here. Thanks.(or whatever you decide)"

Second method

1. Copy instructions from this box by highlighting the section and then click on clrl -C,

2. Then go to the top of this page and click on " All topic>Forum: Recommend your resources" click on new topic--title topic by your screen name & type title i.e. "My personal storage area, Sas-Schatzi".

3.Then put the cursor in box and hit ctrl-v to paste instructions in box. After you have created your own topic box you can delete the instructions. This step is only here if you aren't used to creating your own topics.

4. From drop down box at bottom click on "Add to your Favorites without email updates".

5. First post : Hi, this is my own personal storage space, I would appreciate it that no one posts here. Thanks.(or whatever you decide).

6. For complete privacy (or near privacy) always click on "EDIT" and re-enter your first post. Continue using the same first post for all entries. Within a day the topic will fade away into the computer netherworld.

7. If you don't care about privacy post at will.

12/21/12 discussion re:tamox and effexor, cytochromeP450--storage for teaching

http://community.breastcancer.org/forum/78/topic/770796?page=44#post_3345747

Surgical stress response

https://community.breastcancer.org/forum/64/topic/824365?page=2#idx_47

12/21/12 diet and genetic testing re:Coumadin/Warfarin--storage for teaching

http://community.breastcancer.org/forum/104/topic/766521?page=169#idx_6775

1/2/13 list of threads for newbies-originally written to TSK-storage for teaching

http://community.breastcancer.org/forum/102/topic/767259?page=177#post_3360045

pg 165 FRR--eczema and CA-MRSA and bleach baths-storage for teaching

http://community.breastcancer.org/topic_post?forum_id=102&id=778836&page=165

pg 161 FRR medication--titration-storage for teaching

http://community.breastcancer.org/topic_post?forum_id=102&id=778836&page=161

pg 160 FRR "hows of med admin."-storage for teaching

http://community.breastcancer.org/topic_post?forum_id=102&id=778836&page=160

reposting of Linda_ranches story on Hospice to FRR,pg 160, original on Ma's thread.--storage for support

http://community.breastcancer.org/topic_post?forum_id=102&id=778836&page=160

Essa's description of Lily -of-the-Valley--favorite flower.

http://community.breastcancer.org/topic_post?forum_id=102&id=778836&page=191

pre-existing condition insurance

http://community.breastcancer.org/topic_post?forum_id=102&id=778836&page=190

Frr page 169---how to take a Blood pressure

http://community.breastcancer.org/topic_post?forum_id=102&id=778836&page=170

white coat syndrome--stfupge267

http://community.breastcancer.org/forum/31/topic/797503?page=267#post_3639634

circadian rhythm, melatonin--pub med evidence based research

http://www.ncbi.nlm.nih.gov/pubmed/21476953

Agometaline is approved for Europe/Australia r insomnia . It is NOT approved in the USA

http://en.wikipedia.org/wiki/Agomelatine

How to naturally reset circadian rhytm with food

http://www.wisebread.com/how-to-naturally-reset-your-sleep-cycle-overnight

Flrdldy.s description of hypoglycemia/hperglycemia to review for future use in neuropathy topic

http://community.breastcancer.org/forum/79/topic/730007?page=1#post_1253059

Neuropathy info from neuropathy thread

http://community.breastcancer.org/forum/6/topic/720482?page=1#post_1049316

Pm RE: allergy testing and scientific method --not spell checked

In science when a novel or new idea is tested, it classically has to be proved three times before it is accepted. In the application of this scientific method to drugs/products/devices, testing is done first on possibly cell cultures, then animals multiple times , then moves to human clinical trials. There are required three phases of human clinical trials. At each level (animal to human) the scientific method is RIGOROUSLY applied and documented. It must be submitted to the FDA for peer review before testing can advance from the beginning of testing through each clincal human trial. Upon completion, a final scientific document is presented to the FDA. The the FDA puts the final document through another RIGOROUS peer review to assure that all the required science is met. Final approval is then given by the FDA for production of the drug, product, or device.

Once approved a drug, product, or device can be used. Therefore, in an allergy situation a test by skin, blood, or patch testing is used. A test need only be run once because the previous scientific criteria has been met. So, a positive intradermal skin, blood, or patch test is positive you are allergic. If test shows no response, the test is negative. Repeat testing is sometimes used to confirm initial testing as in HIV/AIDS testing because of the serious consequences of a diagnosis.

The exceptions to this are i.e an immediate drug reponse that causes a systemic response consistent with the known cascade of the allergic response. A systemic response includes localized signs of redness, swelling, and body wide signs of rash, hives, angioneurotic edema(throat swelling), nose itching, palmar itching, Cardiovascular/respiraory collapse. This is known as Anaphylaxsis. Systemic response does not have to be anaphylaxsis for the Doc and Pharmacist to conclude "Allergy" diagnosis. But significant physically signs body wide, or certain signs will cause a declaration of allergy. For example, angioneurotic edema (throat swelling), body wide rashes, and hives. These signs individually or together identify a serious response to a drug. These system wide signs indicate if the drug is used again a strong likehood of anaphylaxsis may occur. Further allergy testing by standard allergy testing may or even should be done (see below re:Keflex) with skin testing likely not done if anaphylaxsis was the presenting situation.

A localized response i.e.redness at an injection site or up the length of the vein may only signal that there has been a histamine release because a drug has been given to rapidly or in a too concentrated state, or both. This type of response is commonly managed by Benadryl and in the case of intravenous injection flushing with IV fluids.

Science is not, "I think it's the Keflex". If your doc says to add Keflex to your allergy list without appropriate testing, this precludes the use of all 2nd generation cephlosporin antibiotics, and likely in your case 3rd generation also, because you have a penicillin allergy. What does this mean to you. There may be a future time that the only sensitive antibiotic is a cephlosporin. Your sensitivity in that situation can be tested, but may delay treatment enough to cause the treatment to be ineffective because of overwhelming bacterial invasion.

jillthuts thread on rectal issues for teaching and referral

http://community.breastcancer.org/topic_post?forum_id=8&id=792169&page=1

wound care thread--skin/capillaries look bad to surgeon. not my thread , but allot of work by me on it

http://community.breastcancer.org/forum/44/topic/754935?page=3#idx_90

PM regarding AARP citations--store for teaching

Good Morning-friends, have been working on an issue with a member. Wanted to share with you all the note below b/c of it's importance. Hope you find it useful Sassy

(members name deleted) Glad the link helped. If you get the AARP magazine this months issue (probably dated may 2013) , there is a story about the safest hospitals and what safety procedures that are in place that cause them to be safe. The article cites that 180,000 people die a year due to medical/surgical errors AND 400,000 drug errors are made a year. The articles states that these numbers are likely higher b/c these are the ones that are reported. I agree. I know you've seen where I've said on the threads "Sorry etc for too much info, just want too make you(BCO memebers) safer". Guess I should stop apologizing for writing stuff in this regard. These numbers are higher then the last set of numbers that I had known. The problem is either getting worse OR there is better reporting. I'll go with better reporting.

It cited that one of the safety items was having an ICU Intensivist. It cited that only 35% of hospitals had Intensivist. I was dismayed at this percentage since residencies for Critical Care Medicine have been available since the 1980's. Truly thought by now that the "industry" would have been driven by demand for better care that this statistic would be 70 to 80%. ICU medicine is absolutely in need of a specially trained doc. Just as in all subspecialties of the American Medical Association(AMA), the knowledge and skills of this subspecialty are critical to survival when a patient is at this level of need.

I'm going to post this on the threads, I'll take off identifiers. My hope is those seeing this will locate a copy of the AARP article. Read it throroughly. Then question there local hospitals on each item. Based on what they elicit re:safety of each facility, they can choose the safest hospital near them for care. It can mean the difference between life and death, and or avoidable complications. Spreading the word to others regarding this may save lives.

Your description of where your friends daughter is now is typical. So, the care may have been fine or she recovered in spite of them. I'll go with the care b/c of your description of how she appears now. What was truly lacking here was the communication in lay terms to the family of was what was going on with the patient. All the lay person then can do observing is assume, as in this patients case, there appeared to be fractured care delivery and choas. What can the untrained person concluded observing this. As in all care, communication is the center of it all. Very often even the care givers question what the recovery will be. AND then the patient pulls through. Continuing with evaluating the records will lend a lot to the understanding of this event.

Postop hydration, Ileus, Diet advancement and s/s

http://community.breastcancer.org/forum/6/topic/781867?page=8#idx_238

opinion on port value pg 10 port thread

http://community.breastcancer.org/forum/6/topic/781867?page=8#idx_238

Discussion on Genelex and my history of use

http://community.breastcancer.org/forum/31/topic/797503?page=127#post_3549224

supers list from pg 118 STFU

http://listverse.com/2008/06/28/9-extraordinary-human-abilities/

Joan's thread on Angelina Jolie, My scenario for PMX.

http://community.breastcancer.org/forum/47/topic/804660?page=3#post_3552673

post PM between chickie and myself rod serling affect

http://community.breastcancer.org/my/messages/read/754663

discussion on oversight committee paper re: drug shortages

http://community.breastcancer.org/forum/31/topic/797503?page=284#post_3651414

To all, we all have discussed chemo/ anethesia brain. We now can call it anesthesia/chemo/drug brain. This article is in AARP magazine. It discusses the drug classifications that can cause memory loss. It describes why each drug class can cause memory loss. It gives specific names of drugs. It gives alternative drugs that can be substituted. I would suggest reviewing it with your prescribing doc if you have concerns regarding any of your meds. I also suggest you put it in your favorite places on your computer. Also, printing it off for future referrence if you have a printer. Please, pass this on to other BCO friends, friends etc. sassy

www.aarp.org/health/brain-heal...

Haven't been here much in alongggggg time, but this artcle is a MUST SHARE type with those I care about

Estrogen in milk in Usa

http://community.breastcancer.org/topic_post?forum_id=78&id=770796&page=22

surgical stress response definition

http://community.breastcancer.org/topic_post?forum_id=78&id=770796&page=20

two posts, Lindan3 about serotonin syndrome and mine on usage---originally on HF forum

http://community.breastcancer.org/topic_post?forum_id=78&id=770796&page=18

SHERLOCK HOLMES ANALYSIS OF UNUSAL S/SOF CYCLEPATH PAGE 16 & 17 ON hf FORUM

http://community.breastcancer.org/topic_post?forum_id=78&id=770796&page=16

tube socks description for arm care prevention of bruises HFF pg 13http://community.breastcancer.org/topic_post?forum_id=78&id=770796&page=13

list of SSNRI's, SSRI's Trade and generic names

http://community.breastcancer.org/forum/7/topic/769408?page=35#post_3676321

Description WASHOUT PERIOD REVISED FROM hOTFLASH FORUM NO ON STFU&CHEESED

http://community.breastcancer.org/forum/7/topic/769408?page=35#post_3676470

LE response from Kira and Binney4

http://community.breastcancer.org/forum/7/topic/763848?page=154#post_3747660

Greg's passing and visitations after death --three

http://community.breastcancer.org/topic_post?forum_id=38&id=738190&page=95

insomnia thread---mental staus change explanation and what to do

http://community.breastcancer.org/forum/102/topic/767259?page=179#post_3806841

genetic registry and testing site from savigrl

https://www.23andme.com/ancestry-only-notice/?redirect=pgeiUqJPEvzRZ2FXn_3J7SVKBEIocFyeRgQHDKYpqLo=

Optic migraine info re:origin treatment-on STFU

http://community.breastcancer.org/topic_post?forum_id=31&id=797503&page=419

Articles related to HTN and NSAIDS post from Insomnia thread 12/17/13

http://community.breastcancer.org/forum/102/topic/767259?page=185#post_3822873

Cindy's blog about the 4 r's of radiation damage, she also post her on the thread on ribp that you have saved in Favs.

http://survivingsurvivorship.blogspot.com/2014/01/cancer-survivor-calamities-ribp-ripn_2.html?showComment=1388766165113#c8532585343534244503

Hi I'm sas-schatzi---sassy from the Insomnia thread. These are all links that I keep in my Favs, b/c they are related to stuff that happens to us. Some I've worked on. Others I haven't. I keep them in case someones has a question about a particular topic that is fairly common. Some are my threads, LOL like Constipation.

Just put them in your Favs and read later or as needed. You can always delete them if you find no value. Don't let this list overwhelm you. It's a resource list.

Click on them, look at the name, click on Favs.

The one you should start with is Just Diagnosed-- Get Prepared. -sassy

http://community.breastcancer.org/forum/5/topic/74...

http://community.breastcancer.org/forum/69/topic/7...

http://community.breastcancer.org/forum/93/topic/7...

http://community.breastcancer.org/forum/62/topic/7...

http://community.breastcancer.org/forum/67/topic/7...

http://community.breastcancer.org/forum/102/topic/...

http://community.breastcancer.org/forum/90/topic/7...

http://community.breastcancer.org/forum/64/topic/8...

http://community.breastcancer.org/forum/8/topic/77...

on the above link a synopsis is on page 25 and 26

http://community.breastcancer.org/forum/6/topic/78...

http://community.breastcancer.org/forum/8/topic/79...

http://community.breastcancer.org/forum/64/topic/7...

http://community.breastcancer.org/forum/44/topic/7...

http://community.breastcancer.org/forum/78/topic/7...

http://community.breastcancer.org/forum/69/topic/7...

http://community.breastcancer.org/forum/73/topic/7...

http://community.breastcancer.org/forum/79/topic/7...

http://community.breastcancer.org/forum/44/topic/7...

http://community.breastcancer.org/forum/8/topic/77...

There are oodles of other forums and topics, but these may help get you started---sassy.

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badger's "pink glove dance"

. http://www.youtube.com/watch?v=OEdVfyt-

In case you don't have this link. It's a drug site that is great even though it was done by the government. Why is it GREAT! 1. after putting the drug name in the search box and the list is pulled up the first drug manufacturer is the one that originated the drug. 2. importance---all the pre-approval clinical trial documentation is there 3. all post marketing data is there 4. hyperlinks throughout to connect within the report for easy referencing between topics.

http://dailymed.nlm.nih.gov/dailymed/about.cfm?CFI...

tips on how to talk to a cancer patient

http://www.cancercenter.com/community/caregiver-ti...

Hi reposting this on some threads, may be old news to some, but to good of info not to pass this on,Sassy

Bluebird144…NJJoined: Apr 2013Posts: 393

13 hours agoBluebird144 wrote:

Knitted Knockers Charities is a non-profit that exists to provide free patterns for knitters and crocheters to be able to make knockers and help mastectomy patients get freeKnitted Knockers made by volunteers.

I love my Knitted Knockers! They are light and soft and warm. Unlike my silicone prosthetic which is heavy and cold when first worn, then it later causes me to sweat.

I wear my knitted knockers inside a regular bra or tucked in the pocket of a mastectomy bra. They are beautiful, and a godsend to those of us with an uneven mastectomy scar.

Knitted knockers website:

http://www.knittedknockers.info/

Fall down seven times, stand up eight.

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How to change avatar Chevyboy: Save the pic to your device with a right click or holding finger down on the pic until you get the save option. Different for different devices. Go to your BCO.org profile, click settings, go to your avatar setting, click on choose existing option, then pick our sweet bluebird.

APRIL15TH 2012 WRITTEN AFTER CRANIOTOMY

-the other thing I learned from the crainiotomy. Cancer WILL NEVER TAKE MY PEACE AND CONTENTMENT AGAIN----EVER. Whatever may happen in this life, I will not EVER give it that power AGAIN. It robbed us , as a thief, of 3 years of our lives. Cancer may try to be a thief again, I may ultimately feel cancers hatred, it may kill me, but it will never be let into my soul and spirit again. (EDIT MAR 18TH 2014----INTERESTING I SHOULD FIND THIS AGAIN -NOW WITH THE THYROID)

Thyroid contract:

http://www.livingwithgravesdisease.com/forums/topi...

Originally posted on 05-09-2002, 05:27 PM

Originally posted on 05-09-2002, 05:27 PM:

Hi all,
The last couple of weeks I keep reading more and more from newly diagnosed graves patients, or old timers who now experience the problems after RAI, who were pushed, rushed, bullied and or lied into RAI. One young woman was told one day she had graves, 2 days later she was given I-131, another woman is now being bullied into RAI by a doctor who will not treat her any other way, another not given ANY risk factors of RAI and on and on and on...

Well I got ragey over this today and decided to write a contract for new people to take to doctors who refuse to work with them unless they do RAI without giving them a chance to heal, to research, to decide for themselves...hey, if anyone can get a doctor to sign this, more power to them! If I had this back when I was diagnosed, and the doctor signed this, *I* would have done RAI without hesitation. We all know Doctors are not going to sign it, but maybe presenting the bullies with this will make them stop and think.

I can't help but get the impression *we*, groups like ours, are making a difference in what choice people make in their treatment decisions. I get the feeling doctors are either getting angry over groups like ours, or feeling threatened because of groups like ours, they are trying to rush patients into this much much quicker from what I am reading.

Anyhow, no sense in writing something like this if it isn't shared. (have shared it with graves_support also)
Jody

Contract For An RAI Pushy Doctor

1 - You agree to accept 100% responsibility for any adverse side effects I may suffer if I take I-131 at your request with your assurance that this treatment is 100% safe, for the duration of my life, especially if I am kept in any hypO state because of lack of proper treatment from yourself. This will include:

A - loss of work because of hypo symptoms that may become so debilitating I can't function properly or without pain;

B - weight gain, you will accept responsible for any and all new wardrobes I will have to buy in the duration of my life should I experience weight gain because of being in a hypo state with lack of proper treatment, proper labs and proper replacement hormone;

C - You will be available 24 hours a day, giving me access to your home phone number, your cell phone numbers, your pager number, your e-mail address, and take any phone calls I place into your office, your home, your cell phone or your pager; should I become depressed and need to talk; should I not be able to sleep, and need to talk; should I just need to talk or ask questions.

D - Should I be continuously cold, because of being left in a hypO state, it will be your responsibility to see that I have whatever I deem necessary to keep warm.

E - You will accept responsibility for all hair appointments, hair and nail treatments should I suffer from hypO symptoms that will cause my hair to become brittle, break or continue to fall out or affect my natural nails;

F - You will accept responsibility for any and all fertility treatments should I not be able to conceive caused by your treatment keeping me in a hypO state for my individual set point;

G - You agree to work diligently with me to make sure I do NOT go hypo in any form...this will save time and effort for both of us, and money for you. This will include working diligently to find my set point, where I feel my best.

2 - you will accept responsibility for ALL ophthalmologist visits and any surgeries that may occur as a result of I-131 bringing on or worsening my eye disease.

A . - Should I get the eye disease or my existing eye disease worsens after treatment with I-131 you will accept financial responsibility for all eye drops, eye gels, tape to keep my lids closed over night, steroid treatments, eye radiation and surgeries.

B . - If my eyes become so bad I can no longer drive and must use public transport or be driven, you will assure me that I will get to wherever I need to be day or night.

3 . - You will monitor me for the duration of my life using the Free T3 and Free T4 lab tests so we both have a clear picture of what is going on with the actual thyroid hormones. You may run the TSH for YOUR benefit but it is not to be considered in any adjustments of my hormone replacement medications I will have to be on for the rest of my life. The TSH will become your financial responsibility

4 . - You will NOT treat me as a lab value but will adjust my hormone replacement meds based on symptoms more so than lab values.

A . - You will be open to using Armour Thyroid or a combination of T3 and T4 supplements, a compound prescription using a time released T3 with T4 hormone replacement so that I may remain balanced throughout the day should *I* deem it necessary that T4 replacement is not enough for me.

4A . - You will keep close watch on ALL thyroid autoantibodies until they disappear. This will include TSI, TPO, Thryoglobulin, TRAb, both blocking and recepting, as well as the standard antibody tests in the standard thyroid antiautoantibodies panel. Should these remain high 3 months after I-131 treatment, you will then prescribe and pay for the antithyroid drug that I may be able to take, until these antibodies are no longer registering in my labs. This will assure me that you are willing to also address the autoimmune nature of this disease, rather than just ablating my thyroid and considering this enough.

5 . - You will accept financial responsibility for all necessary treatment, for the duration of my life, should I ever get any of the cancers associated with the use of I-131, this will include, cancer of the thyroid, breast, ovarian, (or testes) cervix, uterus, pancreas, and parathyroids or any others that may be deemed at a later date to be an outcome of radiation ablation of my thyroid gland.

A . - You will accept full responsibility should my pancreas, pituitary, adrenals become incapacitated for the duration of my life.

Should there be, at a later date, any other symptoms, reactions, consequences of the use of I-131 on my body released from the Department of Energy's currently sealed files, from Medical Associations, and from Independent Research that are not listed above, you will accept full responsibility in medical bills, free medical treatment and lost wages for the duration of my life.

Should I die because of an adverse reaction to the use of I-131, because of any future complications, because I became hypo and depressed and have taken my own life out of desperation, you will, willingly, without bias, pay numeration to my family, or the person I decree a sum total of Ten million dollars ($10,000,000.00) within 5 working days of my demise.

Should you expire before the end of this contract, you will designate your estate to continue with full financial obligations through the duration of my life.

If you will agree to sign this contract, after reading and initialing each item in front of a notary or your attorney and return this signed agreement to me and my attorney we will then sit down and discuss I-131 treatment. I will then be able to believe YOU that all is safe with this treatment, that you have no qualms treating me this way, and in the future because you know that none of the above mentioned consequences is a possibility...I can trust you to treat me safely, compassionately, with full medical attention.

However, should you not be inclined to sign this contract, I will fully understand , and we will both understand that I-131 treatment will not be discussed between you and I again, unless *I* choose to bring it up.

Doctors
Name _________________________ Date__________________________

*Witness ______________________
Date _________________________

Patients
Name________________________ Date_________________________

*Witness ____________________ Date_________________________

* Witnesses to be an attorney or at the very least a Notary Public.

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MY story sas-schatzi

Nettie had several requests for my story. Figured you needed to hear it. This is why you keep up with tests. I've been proactive and shit still happens. It's also why I don't much want to keep talking about it. Read it through a couple of times think that it was you. It could drive you crazy. When you ask folks how they felt about what they went through keep in mind it's a hellish as yours. By relating their stories they relive them. Is that helpful to their mental state.

Not trying to make you feel bad, but truly do you want them reliving what they already gone past?

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HI, Sedakans I had a request from another member by pm as to how I felt about my prophy BMX, that BC was found half way through the process. Family stats were 21 women paternal side. 3 aunts/19 first girl cousins. 12:21 with Cancer. 9:12 BC. Braca 1 & 2 neg. Bad gene. Gene unknown yet. I thought I'd just drop off my story in passing through since I just rewrote it. I'll add here my twin had ER+ BC in 1996.

I recommended we have hyster/ BSO. In 1996, Ovary removal was not recommended treatment in that time. I had been following BC at the time in my "set" of topics in journal reading. Then there were four family members that developed BC within 2 years. Tamox was being used then to suppress the ovaries. What my years in nursing taught me was to be aggressive. Tamox was still relatively new. We(twin and I) did a pre-emptive strike. Hysters and BSO's each. She survives today. She had 1 node/38.

I had been thinking since she had her BC in 1996 about doing a PBMX. Intensely thought about it for three years before I took action. The following is the story.

Copy of PM:

member name deleted, sorry for the delay, I was dealing with a new cancer--thyroid. Now in recovery.

Re:PMX I am now convinced based on a recent reread of my 2009 path report, that my BC was not missed or was so small that the mammo couldn't see it, and that my BC found 4 months later by MRI was just that aggressive. This is based on the fact that I went from Grade 2 -6 to Grade 3 --8 from jan 23rd bx to feb 18th bmx. less than ONE MONTH. After BMX I asked for a pathology re-look to see if there was a grading error. There was no grading error. It was just that aggressive.

If I had not been in the prophy pipeline I'd be dead. Because the mammo was clear. I still have the NED letter that says "see you next year". I have NEVER regretted the prophy. I have had pain and physical issues but that was b/c of PS and drugs.

Jan 23rd 2009, I was dx'd with a brain tumor, BC, and lost my career in the space of 4hours. Not a good day.

My DH was dx'd 3 months after me with Lymphoma. He passed in august 2010.

My brain tumor started growing in late 2011. Had it removed mar 2012. It was still benign, but that wasn't known until after removal and pathology complete, but we were pretty sure it hadn't crossed the line yet.

The thyroid cancer dx'd officially Feb28th/mar 10th 2014. would have been removed last summer July 2013, if the pathologist hadn't screwed up and "missed it" on BX. This one I am going to go to court on. !0 months of delay in treatment.

Long story on colon polyps, I've been very aggressive on colonoscopies. Last one July 2013, I had a precancerous polyp in that scope. Next scope summer of 2014. If there is another precancerous polyp. There will be a new plan which may include removal of that section, or just continued frequent scopes. That chapter hasn't been written yet.

The prophy route saved my life. sassy

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notes on Rai!#!OH Maddy, LOL. Fuck it all I may be dead next week , but ain't dead this week.. Totally energized by the fact that all these yuahs with all these degrees over 64 years haven't figured out that the hand and vulva and butt are being contaminated.

The nuclear med gal that has been a friend working in the hospital since I went from the external building to the main building in 1998, licensced since 1970, retiring in Sept. When I talked to her tues and described what I'm describing. is so enmeshed in what has been promulgated for decades, she couldn't get it. She kept saying sheila it's going through your system what difference if it's on your hand.

Well big difference to the hand cells. The highest concentration of the drug is in the thyroid tissue that's left. the isotope is filtered by the kidney. The next highest area of concentration is the bladder. That's why the flushing by drinking lots of fluids, so you pee allot.So, it doesn't sit in the bladder. If that urine comes in contact with the skin of the hand , where is the next highest area of concentration? The hand. This can be avoided by the person wearing gloves.The other area is the vulva and butt. When I was trying to explain this to my friend I could HEAR her thinking " well just pee straight down. Well that's nice , but for allot of folks that just doesn't happen. So using the peri bottle spreading the labia to flush the labial folds then the entire area and buttocks assures some degree(not total) of getting it off the skin. Everything in the literature from the NRC down though all descriptions down to the hand outs given to me as a patient describe that if there is a spill of urine or vomit use gloves to clean it up. Well what is wiping yourself and getting pee on your hand. DUH---there is NO difference. They make this huge deal about flushing the toilet twice, flushing the sink. Isn't the patients skin more important than porcelain. Is the Gamma radiation going to change /alter the DNA of the porcelain NO. Porcelain doesn't have DNA . Does the SKIN--- YES----does the skin of the vulva and butt YES.

Different point of view. If it's so important to wash the hands, which is stressed with every protocol, how can spraying and flushing the vulva /buttocks not be equally important.

Regretfully, I didn't start using gloves till x hrs after the start of this. Not sure when b/c the week is a blurrr. It was soon. What I'm going for is a protocol that teaches 1. a list of things to have on hand 2. how to setup the toilet station. 3. how to use the station. 4 how to use the spray bottle 5. how to dispose of the paper 6.how to take off gloves. 7.how to rinse the toilet.8 how to rinse the sink. 9.how to reset station for next voiding. How to dispose of paper products.

Code of Federal Regulations(CFR) site stated that I should have kept the discarded paper products for 80 days. Not a single protocol that I've read(dozens) stated that.

BTW CFR runs this country. AND in this situation no ones paying attention.

So, I'm sending this to you but going to save it too so I can referrence it when I talk with them

5/15/2014 post re: Social Workers

Hi, popping in. I was posting with another member. I thought sharing the below information may be helpful to you Winking .

The link www.needymeds.org is to a web site started by a Social Worker and a doc. It is a tricky site to use. The first page leads to a several hundred resource pages. But I think this first page, does not project the wealth that lies beneath. Be patient when following the links within the site. There are sections that are disease and drug specific. The specific page then links to lists of organizations that provide monetary or other types of assistance.

Register first and do the request for assistances form. Reason: the request for assistance form is filed. If you apply to 1 or 20 organizations/companies, the forms don't need to be repeatedly filled out. The system is designed to pull information from the original form. There may be a few particulars that need to be added to a companies/organizations form.

All the pharmaceutical companies have patient assistance programs. All the drug manufactures are listed there

The other way to reach drug manufactures is 1. call the manufactuer patient assistance number(goolge keywords: drug name and manufacturer, then to webpage>>>patient assistance. Very time consuming.

There is so much more on www.needymeds.org. It took a bit of time to wander through the whole site. I've shared a telephone walk through with many friends and relatives. I even called healthcare facilities to tell them about this link.

For completeness, there are many ways to get financial assistance for whatever you need. There are organizations that will do things for you i.e volunteers that buy groceries, drive, install handrails, build wheelchair ramps.

How to find the info besides from the link above? FIND the SOCIAL WORKER(SW). It's there job to know these things Talk to all of the following 1. cancer center SW, 2.hospital SW, 3. Insurance companies SW, 4. County SW. 5. church outreach leader.

I requested from my insurance carrier, a consult with a SW. That one appointment with the insurance carrier Social Worker, led to grants totaling $10,550. The meeting with the cancer centers SW, led to coverage of neulasta for $4000.00.

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Posted on: 2 hours ago, edited an hour ago by sas-schatzi

FLJoined: May 2009Posts: 9,927

sas-schatzi wrote:

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