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Finding the resources and information you're looking for is a daunting task. Discovering good, sound and reliable sources can be even more difficult — especially on the Internet.
For those of you living with a past or present diagnosis of cancer, being well informed is one of your best defenses. Some of you have asked recently about finding research updates, the latest in treatment options and how to know what's best for you.
Here are some ideas on how to find the information and education resources that you're looking for:
Get personalized assistance — Go in person to your clinic or health care center and ask if they have a patient library or resource center. Most often the library or education center is staffed with a librarian and educators who can assist in your search for research updates, information and resources. Mayo Clinic Cancer Center in Rochester, Minn., has a Cancer Education Center located on the lobby level of the Gonda building that's open every day (Mon. - Fri.) and can assist with your personal information and educational needs. For more information call 507-266-9288.
Find reliable sources online — Here are a few ideas to help you get started.
Subscribe to a cancer journal or newsletter — a few suggestions include:
Feel free to share other excellent resources that have helped you in your search for information as a cancer survivor.
Sheryl M. Ness, R.N.
Follow on Twitter:
Join the discussion at #livingwithcancer.
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Sherry, In addition to calling your coordinator and speaking with your cancer doctor, call the Cancer Education Center in Rochester Minn. to speak with a patient Navigator for a connection to resources in your area. Call 507-266-9288.
I am wondering why I can get no post cancer treatment guidelines, none of my doctors seem to know what the other is doing. I contacted the Cancer Care Coordinator in Eau Claire, WI and have received no reply. I thought every patient was supposed to be given a treatment plan and post cancer assistance??
My father has been told any more treatments will not help his non-hodgkins lymphoma, stage 4 cancer and we were told it is now all about quality of life. No prognosis on time frames, no information given on what to look for, nothing. I am his daughter and caregiver and I need to know so we can plan Dad's life and work on the bucket list. It seems I cannot get this information on the web either. Does no one want to commit to an answer? I won't hold you to it.... I just need help!
Lynne, During and after chemotherapy, diarrhea can be a side effect. You may want to try Immodium and see if this helps. It may just take time for your GI system to recover from the chemotherapy. Also try eating very mild foods, nothing with high fats or spicy. Rice, potatoes, bananas, crackers, soft puddings. If you can, ask for a meeting with a Nutritionist or Dietitian for more ideas.
I have severe diareah after taking chemo..prescriptions do not help it..would acidopolis help?
My wife Debbie passed away on Sunday.
We had taken her to a Hospice home and were assured that it was free and how lucky Debbie was to go there. I am unemployed so that was good news.
The next day I was called by their business office and I was asked for my credit card info and was told they wanted three days in advance and the rate was $400 per day.
I also had to pay for her cremation $1,500
and an ambulance ride for $1800.
Nobody in this process ever asked if I needed any help with the obituary in the paper so their wasn't any!
The remains will be picked up today by me.
They are ready a day after the service was held by my church.
Nobody in this whole cancer progression ever wondered how I was doing during this time period.
It is a damn shame that there is no concern for the spouse of the cancer patient.
I am so sorry for myself about what my wife went through but it has been no picnic for me either.
Does anyone find the available information provided online useful in order to manage their chronic disease such as Cancer?
My father was diagnosed with a glioblastoma 2 days after Christmas. He is 76 and has a farm of which he has sold all his horses, mules and cattle. he went to MD Anderson and they were able to remove all of the tumor. He has had his initial radiation and chemo and 1 round of chemo (5days on 3 weeks off). He had an MRI before starting the chemo and after the initial tx of radiation and chemo. He tolerated the rad and chem0 very well, but the double strength chemo was much more dificult. he was due to begin the 2nd 5day course, but his memory and speach has gotten so bad. They repeated the MRI and saw something which required a PET scan. No Cancer, but a ring of tissue necrosis.(my mom said she believed that was the term. I just wanted to hear from anyone will his memory and ability to talk, write a complete sentence, etc. improve? He has always worn hearing aids and his hearing is much worse now. The tumor was in his R temporal lobe. Where will this all lead? I can't help but grieve for the inevitable. Is there anything I should say or do now instead of wishing I had later when it is more difficult? Are there services you think Mom and Dad should look into to help ease the side effects or just the constant drain of this terrible cancer? They live in Nashville. I think Dad's main concern is getting the farm sold and knowing mom is settled in a home she can manage. He is concerned about the way he set up his will. He just feels so responsible for the 4of us and of course mom.
This post is for Erin. I can't even imagine how hard it must be to be in your situation. A positive attitude is so hard to keep ALL of the time; so give yourself permission to feel afraid and realistic. It is true that people do not always know what to say. However, you might find support from your close friends if you are honest about how you are feeling. Thank you for having the courage to share your feelings on the blog. You have many people here who can support you and understand your feelings.
going for my 6 month soon i am terrified....but I do not let anyone see it. and all they say is "you have to stay positive" or my favorite!! (which I have heard hundreds of times) "You shouldn't worry ( HA ) you will be the one that makes it!
Thymic Carcinoma stage 4 I don't think so
VERY RARE AND NOBODY "MAKES IT"
I feel guilty because I almost wish they would find it this time ... at least the torture of waiting and doing it alone, because no one really gets it, would be over.
I smile and pray and have a GREAT attitude but I think i have earned the right to also be realistic.
Thank you, so much, for this link. It will be a great source of information for me. I appreciate your prompt reply.
Have a great day, Sheryl.
I recently lost a very dear friend to cancer. I'm finding the grieving process to be especially difficult because I have cancer myself. My friend and I were going through chemo together. Part of me feels guilty because I survived (so far, at least) and my friend didn't. Are there any resources for people in my situation?
This post is for Cindi. A person with Von Willebrand disease will need to plan well with their surgical team for any reconstructive plans because of the increased risk of bleeding with this disease. For a comprehensive overview on Von Willebrand disease from Mayoclinic.com, copy and paste this link in your browser http://www.mayoclinic.com/health/von-willebrand-disease/DS00903
Many of you have been also talking about NCI Cancer Centers in your blog postings. This designation means that the Cancer Center has comprehensive patient services including robust education resources. Mayo Clinic's Cancer Center spans the three sites including Minnesota, Florida and Arizona. In Florida, the Cancer Resource Room is located in the Davis Building, 8th floor lobby and is open Monday - Friday. In Arizona, the Patient and Health Education Library is located on the Concourse Level, behind the fountain, in the Mayo Clinic Building. The Library is open and staffed Monday - Friday; or call 480-301-8946.
Can you give me some information on reconstruction surgery with Von Willibrans disease type 2B? How will this increase the risks of the surgeries? Thank you for any information that you can provide.
For lung cancer fighters I strongly endorse these two sites. For getting information from oncologist's "Cancergrace.org" Doctors will reply to your questions as well as having blogs on various points of interest. The 2nd "www.inspire.com" A wonderful support site that can be really uplifting.
Two suggestions for information;
First- The book; Anti Cancer- A New Way of Life by David Servan-Schreiber, MD, PhD. Great book!
Also, a subject that has limited information is Male Breast Cancer. Visit http://hisbreastcancer.org/
for information and to help bring awareness.
Not to leave out Keith Block's book " Life Over Cancer", Bantam Books. So far, I am a living testament and would recommend it to anyone fighting the good fight. He also runs a clinic in Evanston, IL that I visit in addition to my regular oncologist Dr. Piel.
Sorry, I ran out of writing room. (Always do).
Elizabeth is now near our home, in an NHC
Facility. Hopefully, she can come Home, at
long last, in May, where a Home Health Co.,
under Medicaid - yes, really - will take over.
We will also have Coverage with our main Ins.
carrier. Liz is 63, I am 64. We are retired'
but I won't be able to "handle her" alone.
Liz cannot walk & requires a Catheter & a
"Depends." The 'enemy' shut down her lower-half, but she IS having improvements in her
legs and the "other" functions.
The Lymphoma was diagnosed from a swollen node
on the L side of her neck. She had an infarc-
tion in the R hemisphere of her brain, but
Lymphoma there is unlikely, say her MD's. Her
spine and fluid look good, and the Nodes look good at this time. The BIG culprit is a mass
which developed at her Lumbar, just below the spine, and unfortunately became intwined in
the nerves there, or "horse's tail," hence,
her paralysis issues. We have become a wheel-
Hi, Sheryl. Thanks for all you do to help all of us. My sweet wife, Elizabeth came down with
Non-Hodgkin's Lymphoma in very late June, we
now know (2010). We and my daughter KNEW some-
thing was really wrong with her at that time.
Liz felt like going to the Beach for a few
days with Daughter & grandaughter. She began
to have significant trouble walking, getting
to the bathroom "on time," and with her legs
holding her up. She just couldn't do stairs
very well, also. We had been to the Doctor
before our short trip, and went again on July 19th. About the 15th, she had begun to fall or "slip" to the floor and wet herself before reaching the bathroom. BUT, she COULD NOT get up. We were terribly alarmed! And we had been watching her (Liz & I) very CLOSELY since our return. On the 22nd, we conferred with her Dr by phone, and we went to Vanderbilt Medical Center ER on July 24. She was really sick. And, Liz has not been home yet. Some of the BEST Hematology MD's in the U.S. (a Team of 10 total) and Neurologists worked very hard to get her where she is today, in remission, and getting stronger each day. She has a Port just under her neck (her R side),and also an
Omeya in the right side of her head. Going on
9 months! Liz is still in treatment every
4 weeks: Vinblastine/Velban, and Methatrexate
as her Dr. deems necessary. All her appts. are at Vanderbilt,under Dr. John P Greer and
Neuro-Oncologist, Dr Paul Moots. She has been in 2 Health/Rehab Centers; now ne
A resource that is still available at Amazon.com is the book Fighting Cancer by Richard Bloch (the R. of the H & R Block income tax preparation firm-the brothers changed the spelling to ensure proper pronunciation). He survived a cancer diagnosis after being told he had three months to live.
He and his wife, Annette, have established more than 20 Cancer Survivors Parks in cities in North America. Each provides sculptures and landscaping conducive to reflection and meditation, with the aim being to encourage people to want to live even though they or a loved one have been diagnosed with cancer.
I am fortunate to live half a block from the first park which was opened in Kansas City near the Country Club Plaza in 1990. I walked there on Sunday afternoon, a beautiful spring day, after learning on Wednesday that I may have myelodysplastic syndrome.
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