kathyb
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I’m so sorry about your dad. Both my mom and dad have died within the last 10 months. I understand the loss.
In reference to you mom: I do believe in miracles.
Kathy
PCL,
I noticed you said Emend must be taken with other antiemetics and on schedule for the maximum anti -nausea/vomiting. I took Emend during my last chemo and the doctor insisted I also take dexametasone with it. He said it helps the Emend to work.
My question: Is there something else I could take with Emend besides steroids? The combo worked great, but I really do not want to take steroids again with my upcoming trial. I know it should not be that much of a concern, but I don’t want to gain more weight and have the round face.
Hope you are feeling better every day.
God bless.
Kathy
Thanks, Lainy, for looking into this. It seems as knowledge grows and skills improve more options become available. I agree, there are positive changes!
Johanna,
I know from experience that no shrinkage does not seem like very good news, but stable is EXCELLENT news.
Being a candidate for cyberknife seems pretty great to me, too. I don’t know much about as I evidently wasn’t a candidate for that either (I go to Mayo) but Lainy knows a lot about it and I’m sure she will post on this.
God bless.
Take careKathy
Cathy,
I have HMO policies and need to get referrals to Mayo, where I am treated. My private policy is through Blue Cross Blue Shield. They have been wonderful. My secondary policy (husband’s) through United Health Care has been very challenging. Stall and deny seems to be there policy with me, even though it’s a secondary policy and they’ve only have had to pay $10 co-pays for office visits. They really fight to give me any coverage at Mayo and have even actually lied to me. It’s been an ongoing struggle every time I’ve needed a new referral.
On another subject, Mayo wanted me to be able to have a liver transplant but I did not meet the protocol. In the month it took for insurance approval to get a second opinion at Mayo, my tumor doubled in size. That was the only thing that stopped the transplant. We never know about “what ifs” though and how things would have turned out.
I’m very happy you were able to have your transplant and glad you share your good news with others so they know about this possible option. For me it wasn’t meant to be, but I have faith that the plan for me has been just as it should and I am very blessed to feel so well.
Kathy
Charlea,
I too am inoperable, and like you, I also feel very blessed with my now almost 2 years of quality life. It’s very nice to see that someone else feels as I do about surgery that couldn’t happen, etc. We are all so different and that is ok. Just really good to read your post.
Kathy
I’m very interested in cancer center’s acceptance of medicare. I have read that some are now not accepting Medicare Advantage plans
Medicare Advantage plans
Charlene,
About work: Added stress is not good for someone with cancer, but it’s really what your dad wants to do.
I loved my job but applied for SS disability within two weeks of my official diagnosis, unresectable bile duct cancer. I was approved in just two weeks after my appointment with the ss office. It seems bile duct cancer has a special classification.
It takes 5 months before you can start collecting SS disability benefits. This is usually counted from the last day you were able to work (in your dad’s case it would be early June), as long as he has not gone into work.
Some company’s have long term disability policies that start when your work short term disability ends – which can get a person through until SS disability starts.
There is also a Ticket to Work Program available to those on social security, if they become able to work again.
If your dad wants to go on disability, he should make an appointment with the social security office as soon as he receives an official diagnosis. I found it helped to have all of what I could filled out online before the appointment.
http://www.ssa.gov/pubs/10029.html
Take care.
God bless.Kathy
Thanks Lainy!
It took me sort of by surprise because I still feel quite “normal” and was planning on doing another cruise this summer.
I go to Mayo Rochester for all my appointments and treatments. It’s only about two hours from our home in Iowa. It would be neat to meet you in person, though.
The phase I part was a bit worrisome at first. A phase I trial has very few people in it and they are testing the safety of the drugs. Then when I found out I had to have chemo 3 times a month I had a little feel sorry for Kathy time. Outside of the fact that it messes up my schedule, I’ve heard they watch you very closely on clinical trials; and my oncologist will do what he thinks is best for me. I’m sure they are or will learn lots from this trial, and I’m sure the drug companies involved really want it to succeed
The drugs have shown promise in research labs.Don’t know if this is true but my thinking is that the reason no one is lined up to take this trial is that there just aren’t many of us with cc (compared to other cancers) and those with other cancers have lots of phase II and phase III trials along with standard therapy to choose from. Who knows, maybe these drugs will bring new hope to many- like Gleevec did for those with a certain type of leukemia.
Hope you are having a great day.
Johanna,
I know resection is the goal most people strive for in fighting this cancer, but this cancer is so unpredictable. I have lived as long or longer as many who were able to have surgery with inoperable cc. Although I was told 3-14 months max, I’m almost 2 years out now and still feeling good (symptoms of jaundice and itching started June 09, diagnosed July 09).
What I’m trying to say is if you cannot have surgery, hope is not gone. Unpredictability can work in our favor. Since I am not resectable I guess I need to feel this way to have peace about it.
What I have personally done is chosen God for my main physician. I am relying on Him to open up treatments and block treatments. I feel this is why I am still a survivor. Only He knows the best plan for me.
People also tell me how strong I am and what a good attitude I have and they think this is why I am doing so good; but I am also weak and have many times of feeling sorry for myself. I tell my husband that tears are good for they get rid of toxins from the body. Don’t know if that’s fact, but it works for me
Take care.
God bless.
KathyJohanna,
I go to Mayo and I’m very pleased with the doctors, staff and treatment I’ve received. Their professionalism and skills are outstanding. I receive my test results the same day. Testing first and doctor appt. later the same day. Very efficient.
In oncology I do not know Dr. Quevedo as I see Dr. Bleeker who is actually a fellow.
Since you have an appointment, you have a Mayo number. When you are registered you can go online to view statements, appointments and lab work. I especially like to see my labs online (same day). You do have to send them a signed with notary paper to validate online viewing before you can do this, but I think I presented myself to the business office in person for validation. Instructions will let you know. https://www.mayoclinic.org/_portal/html/C/index.html
I’m sure there are doctors there I would not click with, but I’ve not met one.
God bless.
Kathy
Peony,
This may not apply, but I had constant nausea during my first chemo and radiation treatments. Nothings helped. Tried many medicines. Turned out I had developed an ulcer on my esophagus from treatment. After high doses of prilosec for 4 days, the nausea was gone.
Hope an answer/solution can be found soon.
Kathy
