I need hip surgery which STOPS my chemo! - Page 2

Lien · 10-26-2009, 02:14 PM

Dear Chelee,

Are you sure you want to stay with this onc? I haven't heard you say one positive thing about her. Is it at all possible for you to go somewhere else? Or would your HMO be opposed to that?

I hope you find a good ortho doc soon.

I think you are totally amazing! You are dealing with this crisis despite all the setbacks and you do what needs to be done. You're a champ!

Hugs

Jacqueline

Chelee · 10-26-2009, 03:00 PM

Jacqueline, No I do not want to stay with this onc. It is a very longggg story. I have stepped on so many toes at this place due to my sub-standard care that I am not allowed to switch onc. No other onc at this place will see me. It got real messy when I filed a grievance with my HMO...turned into a nightmare.

I contacted every group, association, advocates, Dept of Managed care, several legal groups and even as far as an attorney. Depending on who I talked to things would improve for a short time and then my onc would go back to her old ways. All I can do at this point is wait for open enrollment and change groups. I am literally stuck. HMO's are only for people that don't get sick. Everyone thinks I can just switch onc...I can't...believe me I have tried everything in the book. I can change groups in January 2010 and with that change I LOSE my primary doctor of 30 yrs which I hate to even think of. I also lose all my other doctors in this group that I happen to like and trust. I am stuck and they know it...thats how they continue to get away with this crap. I have to fight for everything. I wish I could just change but it doesn't work that way unfortunetly for me. This is a nightmare for me in more ways then one.

Chelee

Jackie07 · 10-26-2009, 03:26 PM

Chelee,

Do you have a primary doctor now? You should have one because of HMO. If you've got a new one, it might be a good time to ask your primary for the many procedure/test you are needing.

HMO has some funny rules. I gradually realized that my oncologist was just going to ignore many of my complaints. (Perhaps he thought I was lucky enough to be alive this long already? Nah, he always thinks I am hypochondriac.) When I had irritable bowel in January and went to my primary physician, it was probably the first time I went to him (since getting him as primary in 2001?) for any ailment - I was always under the care of either oncology or neurosurgery. And then I started thinking that perhaps my oncologist 'couldn't' prescribe certain things because of the HMO rules (or 'quotas'.)

Anyway, now my primary is sending me to a neurologist (whom I was going to get from my neuropsychologist when my primary was reluctant to give me an MRI after my 'vertigo'.) I believe that my primary simply had no idea of my past brain surgeries. I think he probably 'freaked out' once he saw the huge hole in the center of my brain left by the original tumor and the three bright, shining marbles of recurrence. [Was checking with Neurology department about my referral. They looked at my situation and said I should go to Neurosurgery for appointment. So I called back to the nurse practioner of my primary physician - she left me a message, looks like they are going to get me a referral to neurosurgery. 'Managed care' really means that 'we' need to 'manage' our care, I guess.]

'Communication' is so important, yet our doctors just don't have enough time to listen to us. They constantly forget that we are the best 'informants' of our health condition. After all, we are the 'temple' these 'engineers' are working on.

Try the primary doctor route - they are the power center in the HMO system. If you don't have one right now, ask your hospital to assign you one.

ps. Just re-read your posting. My impression now is that your 'Group' might be hoping for you to change providers so someone else will be footing the medical bills as you have become an 'expensive' patient (as we all have by now.) Talk to your attorney first, as it might let your old provider off the hook too easily if you switch.

Barbara H. · 10-26-2009, 04:37 PM

Hi Cheele,
I would still try to get into the T-DM1 and postpone the hip surgery for two months if that is not considered dangerous. Then you can take a two or three week break from the trial and resume it while you are recovering. Herceptin is not chemo. The small molecule in the T-DM1 trial is a chemo but it is injected into the tumor and very little gets into the blood stream. That's why it has so few side effects. I would not fear having these drugs soon after surgery once I was feeling up to it. I would certainly have an oncologist that you trust look into this issue. Good luck.
You are continuously in my thoughts.
Barbara H.

Nancy L · 10-26-2009, 06:57 PM

Maybe the hip surgery doesn't have to stop your cancer care. I am sure you met Kimberly when you saw Dr. Slamon. I would e-mail her right away and explain the situation. It would seem to me that a non-chemo cocktail like Herceptin and Tykerb could be tried while you are getting your femur repaired. Are they talking about radiation on your bone mets too?

Hugs, Nancy

Rich66 · 10-26-2009, 07:38 PM

If you have a bad relationship with your HMOnc, do you think it would be possible to strike a deal in that the HMOnc would "coordinate" your tx in conjunction with an outside onc of your choosing? With the right onc, you might be able to negotiate a reasonable rate.

Lien · 10-27-2009, 02:02 AM

Oh Chelee, I am so sorry. I live in the Netherlands, where healthcare is so much easier to deal with. We may not have all the trials that you do, although we can even go to another EU country to get it, but we can choose our doctors and medical facilities. And we pay far, far less for insurance than you do. I didn't realize how hard it is for you to change.

I hope you find a solutions that works with a minimum of stress and aggravation. This is very unfair.

Chris is right though about one thing: you can't change the past. So for now, if you can, your best option seems to be to focus on the future and your treatment. You are doing fine getting the best info you can and you have Dr. S's office to help and support you. That's a wonderful thing too!

Hugs

Jacqueline

Chelee · 10-28-2009, 12:08 AM

Jackie, Yes, I have had my primary doc for 30 years...that is one of the things I mentioned I would hate to lose if I change groups. After the nonsense I ran into again today...I have to get into see my primary ASAP. My onc just isn't going to do anything for me...this is very clear. She was suppose to call me with a referral that specializes in orthopedic oncology Monday. Never happened. I made many calls and finally someone from her office calls me today with a orthopedic doctor which I looked up and he specializes in sports medicine...and repairs hands & wrist. His website is full of video's on how to repair different injuries to wrist & hands. (This does NOT seem like the type of orthopedic surgeon I was looking for!) I wanted a orthopedic oncologist that specializes in repairing bone that have mets.

I was down at my cancer center today to get my Herceptin/Zometa infusion. My onc walked in the infusion room twice and pretended not to see me. She knew I was there because she had other office manage come tell me to go see the orthopedic doctor she referred me to and come into see her on November 11th and let her know what he said. (I'm glad she isn't the least bit concerned about my hip and the fact I'm NOT on any chemo or anything to kick the crap out of cancer.) The least she could of done is walked over and talked to me since she is leaving me high and dry with nothing. I have no answers about my hip, chemo or what I should do...just watch time keep going by.

I got a copy of my MRI of femur/pelvic. There is a large heterogeneous mass in the intertrochanteric region of the proximal right femur measuring 6.4 x 4.7 cm. It also notes there are two borderline enlarged lymph nodes within the right inguinal region, measuring up to 1 cm. (The side of mass on femur is news to me...also she never mentioned anything about the enlarged lymph nodes to me.) I have to get my own reports to find anything out.

Chelee

Chelee · 10-28-2009, 12:22 AM

Nancy, Yes I did meet Kim...she is so nice! She was in the room the entire time I was with Dr. Slamon. I called her several times over the TDM1 trials...she always goes out of her way to help if she can....she is a very pleasant person. Today I had to go do my Herceptin/Zometa infusion so didn't have time to call Dr. Slamon's office. I don't have their email as I was just there for a consult. I'm not a patient so I wasn't given anyones email. Kim gave me her card...so I just call and ask for her.

They were all for me doing Herceptin, Tykerb & Zometa...so I would like to see what they say now that this hip issue has come up? My onc and the COH onc were both against it which I don't understand? (Probably cost again since I'm in a HMO...she would never admit it but I can't help but wonder?!) With Tykerb I think the worse thing might be the problem with diarrhea I've heard everyone mention. With a femur repair I'm not sure how fast I can move...could get messy. lol

Chelee

Ellie F · 10-28-2009, 09:50 AM

Hi
Please can someone tell me what a HMO stands for?
Thanks Ellie

Nancy L · 10-28-2009, 10:08 AM

Here is the Wikipedia definition. HMO's have lower premiums and in turn, restrictions on services.

A health maintenance organization (HMO) is a type of managed care organization (MCO) that provides a form of health care coverage in the United States that is fulfilled through hospitals, doctors, and other providers with which the HMO has a contract. The Health Maintenance Organization Act of 1973 required employers with 25 or more employees to offer federally certified HMO options.[1] Unlike traditional indemnity insurance, an HMO covers only care rendered by those doctors and other professionals who have agreed to treat patients in accordance with the HMO's guidelines and restrictions in exchange for a steady stream of customers.

Nancy L · 10-28-2009, 10:26 AM

Chelee,

I am sure cost is a huge factor for the HMO. By the way, are you on Medicare? I calculate that the retail cost of the three drugs is close to $10K per month. Of course, insurance doesn't pay that much to the oncs. I would love to know the wholesale cost of all these drugs but I haven't figured out a way to get that info on the web.

Diarrhea with Tykerb is a problem but can be controlled by taking a Lomotil every morning and a strict diet. There are a lot of things you just can't eat or drink while you are on this drug---when you do, you pay big time.

The DM-1 trial is attractive. Cost is not a factor for the HMO when they put you on a trial---the drug company pays. And I am sure they get paid for all the paperwork, etc. So it should be a win-win to put you on this trial.

How do they plan to attack the tumor---radiation???

I feel so bad that you have a double wammy going here. And from personal experience, I know how difficult it can be when you have issues with a physician but are stuck and can't change. I wish I knew some magic tricks to share but I don't.

Nancy

Ellie F · 10-28-2009, 11:28 AM

Thanks Nancy
Being from England I sometimes struggle to fully understand the complexities of your system for paying for healthcare in the States.
Ellie

BonnieR · 10-28-2009, 11:46 AM

Ellie, to add to the confusion, not everyone has an HMO plan.

Chelee, one thing I noticed was that you said the onc wants YOU to report to HER what the consulting surgeon tells you. Seems to me that should be done between the doctors themselves. That should not fall on the patient's shoulders. Although, of course, "if you want anything done......"

Chelee · 10-28-2009, 03:06 PM

Nancy, I believe "cost" is playing the biggest factor in my so called care if you want to call it that. I did get my Herceptin/Zometa infusion yesterday...but that's it.
As far as my femur goes I am suppose to be seeing an orthopedic surgeon to repair the hip before it breaks. No mention of radiation. (It sure is getting painful though.) My onc gave me a referral to an orthopedic. But I told them yesterday he is a "sports ortho that specializes in wrists & hands"...period.

I called that ortho's office today since there is about 7 other ortho surgeons...but the lady in the office said one of the ortho doc's said they would not touch my hip and referred me USC for a orthopedic oncologist that specializes in repairs with bone metastasis. I will continue making calls...but no one seems to care...who do I call?!!! But in the mean time...I NEED to do something to stop my cancer from spreading. Last time my onc even said that I am SO strongly Her2 I HAVE to get started on something now. But yet she can't even call me back or give me the time of day. I have put calls into everyone today and no one is calling me back. So much time has went by since I've recurred & I'm still not gotten any treatment. I'm at my wits end with all this...I need my hip repaired and chemo now. But I can't even get a doctor or anyone to call me back. This is beyond cruel...since I'm stage IV I suppose they figure I'm costing them too much money so I should just go away and die.

I noticed in my MRI report it says my mass on hip is 6.4 x 4.7...and it also mentioned two enlarged lymph nodes within the right inguinal region. (Rt side is the bone mets side.) So I suppose its spread to nodes now too!!! My onc failed to mention this to me. You think if she cared even a little bit she would be calling me...but she's hung me out to dry. (I think I'll go have a melt down...I can't take this anymore.)

Chelee

Lien · 10-28-2009, 03:12 PM

Chelee, this all sucks. I'm sorry, I'm out of polite language. Is there a patient advocacy organisation in your area? Could Kim refer you to someone who could help? I'm sorry that I can't help you from where I am, the Netherlands, Europe. I just don't know how things work in the US.

Sending you a great big hug and healing vibes and calming energy

Love

Jacqueline