“You were kind enough to print my letter (puzzled in Pa). Can our HMO insurors really cancel our HMO insurance if we opt for another plan. What about all the choices in plans they say we have? Who can we appeal to?”
Dear Puzzled: Every health insurer has to have a clear appeals process. But no matter what, they are regulated by your state’s insurance commissioner. I would call them and speak to a health insurance counselor who can help you understand your rights. If all that fails, there are lawyers who love to fight the health insurers, but that will cost you some bucks, and I’d suggest this only as a last resort. However, just a letter from a lawyer can sometimes move mountains.
strong>Re: VIEW ON THE NEWS: Why don’t we take our medicines?
“I think an even bigger issue are the people who fail to take a prescription because they can’t afford to pay for the medicine. They end up taking less to economize or don’t take it at all.” –jajohn
Very true. Please note that it does you no good not to take the medicine as prescribed. A better plan would be to call one of these numbers the drug companies are now advertising and tell them you are on their medicine but struggling to afford the proper dosage. Ask for their help. They do have assistance programs. If this applies to you and you go this route, let us know how they respond.
strong>Re: When did you last get your eyes checked?
“While on Lymphoma ‘watch + wait’ I finally encountered some odd habits like walking into things, tripping. No tests showed anything abnormal and I felt pretty good. As this worsened I had MRIs, hearing tests, and the like. Until one day I mentioned to my oncologist that I think I need glasses (was 20-20 till then). He RUSHED me to the ophthalmologist who saw my retinas in hemmorage. I had hyperviscosity syndrome brought on by the lymphoma. The small blood vessels behind my eyes told the story. The quick action by both doctors saved me from a sure stroke as my bloodflow was nearly stopped. After therapy my blood was restored to normal and I am here today. Morale: The eyes do more than just see!” –Rony
Wow, thanks for sharing that story – it’s a lesson for us all. Speak up and mention even seemingly unconnected symptoms to your doctor. In your case, it may have saved your life!
Re: When did you last get your eyes checked?
“I would like to know what you know about the eye problems that go with ulcerative colitis and if Lasik will still be possible now that I have that diagnosis. Also, what you can share with me about the connection of some arthritis conditions with IBS, hair loss, nail loss, joint pain and eye problems. I’m not sure where to go for help. I’ve just completed 8 months of chemo for colon cancer and now have all of the above symptoms!” –Becky
Whoa! You do have a lot of health concerns, with colon cancer certainly being #1 and most serious. I don’t know why getting a procedure for better vision would be prohibited because of your digestive issues. But, as it is important to note, I am not an expert in this at all.
As for joint issues and the like, my understanding is that ulcerative colitis is an autoimmune condition. So is rheumatoid arthritis. You should ask your gastroenterologist whether the joint pain and digestive problems could be connected. These are the kinds of questions you should be raising with your doctors who, I would imagine, you see regularly for your colon cancer and your UC right? Don’t be shy. We wish you all the best.
“I was diagnosed with CLL in 2002 at the age of 47. I am still in the ‘watch and wait phase.’ I would like to go see a specialist to learn what my options are. If so, can you recommend someone in or near the Bend, OR area, or do you feel that would it be better to travel to one of the CLL Research Consortium hospitals? I was considering either M. D. Anderson in Texas or UCSD in California. Thank you for your inspiring site! It’s good to know we are not alone on this journey.” –Dawn
Dawn, I think it is wise to consult with a CLL sub-specialist. At the very least, your local doctor should consult with them for you, but that is second best. There are some great CLL doctors out there. Dr. Neil Kay is at Mayo in Minnesota and Dr. John Byrd at Ohio State in Columbus are highly recommended. And there are others. Looking on the CLL Research Consortium Web site will direct you to specific docs who are up on the latest. Also, be sure to listen to our latest interview with Dr. Kanti Rai, one of the foremost experts in the treatment of CLL, to help put everything in perspective.
“Greetings from Africa. I was diagnosed with multiple myeloma in September 1990, and this is my 16th year of survival. I am 61 years old, and I am now on chemotherapy sessions every three weeks and would like to discuss treatment options and many other issues with other survivors. Please advise me how I should do this. Thank you so much.” –Maureen
There are some great myeloma patient organizations that can connect you with others. One is the International Myeloma Foundation in Los Angeles and the other is the Multiple Myeloma Research Foundation in Connecticut. Both are great â€“ far away geographically but as near as your e-mail.
“I was diagnosed with CLL in May 2004. On my second visit, my doctor suggested that my only treatment might be a stem cell transplant as I have some unfavorable markers (ie CD38, ZAP70 at 80% or higher and also BM2 at 2.7). I have tried to research as much as possible on the Internet, which is fantastic. To date, I have had no treatment. My WBCs are increasing quite a lot. Recently, they were 156K; however my Red Cells are holding so my doctor feels I need no treatment.
“I do have critical issues related to treatment, as I lost both of my sons to cancer. One at age 16 in 1984 to Ewing’s sarcoma, and one at age 26 to acute myelogenous leukemia in 2001. I am wondering what type of clinical treatment you had and if you also had bad markers. I was referred to the Seattle Cancer Center for a second opinion, and they felt I was a candidate for a stem cell transplant if I had a match. I have two sisters, and neither was a match.
“I was really angry that my sons did everything that the doctors said to do and they still died horrible deaths. I could have easily checked out, but I have a daughter and two beautiful grandchildren and I’d like to be here to see them grow up. Do you believe that CLL patients should be seen by a CLL specialist?” –Robbie
I am so sorry your family has been so devastated by cancer. You have suffered quite a lot!
Yes, I think you should consult with a CLL specialist. The best centers that do a lot more than transplants would be at M. D. Anderson and Ohio State. They may have more options for you to consider than just a transplant. See Dr. Keating at M. D. Anderson, or Dr. O’Brien or Dr. Wierda. At Ohio State, there’s Dr. John Byrd. I think it’s important for you to get an opinion from one of these top doctors. I really believe that strongly. Good luck, and write again!
“I have been following your webcasts on and off since my wife Carolyn was diagnosed with CLL a little over two years ago. CLL was discovered as a result of tests she was having when she had a mole removed as well as several lymph nodes. She is in very early stages and has had no change since the discovery. She is 57.
“I would like your opinion on two things if you could share it:
“Carolyn really doesn’t want to take an active role in researching CLL. Scared, I guess, of what she might find out. I try to be informed and give her good advice. I guess I wish she would stay more informed, but can understand why she doesn’t. Do you think this is a good way for us to proceed?
“Carolyn was diagnosed at and doing follow-ups at University of Michigan Hospital in Ann Arbor. It is not a member of the CLL Research Consortium. What are you thoughts about this. Thanks for you time and sharing.” –John
In the end, it is up to the patient, in this case Carolyn, to call the shots, unless she asks you to do it for her. While you and I may believe knowledge is power, it’s up to her whether she does. I would suggest to her that there may be choices to make down the road, and you’d like her guidance on how to handle that. Then proceed accordingly. You can certainly tell her how much you love her, and that that is what motivates you to seek information on her behalf.
As for the University of Michigan, it is a top institution – just like the University of Washington is where I live. But they may not have a leader in CLL. So that may mean treatment initiated there is more standard than leading edge. That may not always be a bad thing. I don’t have personal experience with them, but I imagine they offer quality care. But if you want to be sure Carolyn and you are exposed to the very latest, even experimental options, than yes, you should consult with a member of the consortium.
“I’ve been living with CLL for five years. So far, I have had only one course of chemotherapy, which was easy for me. I would like you to be frank with me and tell me exactly how you feel after 10 years!” –Irma
Right now I’m feeling good, but I find I have more trouble fighting a common cold than the typical person.
I had 2-3 years of winter sinus infections, but felt good other than that. Nowadays, I usually feel great. However, right now, I am in the midst of my second cold this winter. Do I think it’s because my immune system was “nicked” by the treatments years ago? I don’t think so.
I think you may be stuck with feeling good down the road. In the meantime, make sure you are getting all the “supportive care” medicines to help you through cycles of chemo (if you have more): medicines for nausea, fatigue and to lower your risk of infection. You deserve that!
strong>Re: Holiday blues
“Having been diagnosed with colon cancer in February, enduring 9 months of intensive chemo with some long-lasting side effects and now being found to be cancer-free, I feel like I should be more joyous at this Christmas season, but, having lost my job in all that and now faced with financial problems and with no family to help, the season is really getting me down. Friends get very busy at this time of year and forget about you sometimes. That made me think of the elderly who are in rest homes who are also alone and I am hoping to do something for someone there which might bring a little joy to someone, and, perhaps give me a bit of a boost too, but, does anyone have any other ideas? Cancer has so totally changed my life from what it was a year ago that I am having trouble finding a way to re-start, I find a fearfulness I’ve never known. Anyone else? ” –becky
And you should know that we are here for you, too.
Happy New Year!