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GKH
Posts: 288
Joined: Jul 2012

Prior to getting lymphoma I had never been in the hospital and in fact tried to avoid Doctors. I am a bit naive about how to handle this jumble of Drs., symptoms and treatments. The big picture is missing. I need what we would call in my profession a good "systems engineer" to find exactly what is going on. I went to MD Anderson in April hoping to get some of that kind of help. The place was a madhouse, like Grand Central Station. I may just need a good internist. Can you comment how/if you overcame this flood of info and got down to causes for symptoms and determined if they were caused by lymphoma, R or something else? This implies a generalist. I am thinking an internal medicine specialist or a smaller less hectic cancer center. I would appreciate other patients views on my predicament and how to deal with it. I have NHFL Stage 4 grade 2A/2B
In R maintenance - 13 infusions to date. Main Symptoms are severe fatigue, joint and muscle pain, night sweats and occasional dyslopia (double vision).

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1022
Joined: May 2012

GKH,

My experience is that, unfortunately, most Internal Med docs know very little about cancer. I would say that generally all non-oncologists know little about cancer. That leaves oncologists or Oncology NPs as your most likely source for informational help. Plus, bluntly put, I think that few oncologists are going to care what is causing your pains and discomfort. For example, although my oncologist was a very humanitarian guy, I developed severe breathing issues during chemo, caused by bleomycin, which causes lung toxicity in 10% of all users, and kills 2% of all users, by going into lung fibrosis. He ran some tests to rule out fibrosis, but his position regarding the breathing problem and related toxicity was (he did not say this directly) "you can have chemo and side-effects, or you can have cancer, and die." Those are really the options. Oncologists are somewhat like surgeons: they feel that they are going to make your hurt, but that this is unavoidable.

I was ejected out of a car 25 years ago, and the car rolled over me. I had 18 fractures and my chest cavity completely caved in on the right side. My knee cap was found in my pants leg and reattached. My back is shaped like a pretzel. Two years later, I could walk again. Physical therapists are the worst: they deal with hurting people all day, and have to make them do painful things to get better. Their minds become harsh and they seem to have to blot out the sympathy part of their personalities, at least when dealing with patients. I had a lot of different therapists, and this mentality was present among all of them.

I believe that oncologists MUST be a little similiar. Among all doctors, they have a very high ratio of patients who are going to die, and die relatively quickly after receiving them into treatment. The oncology group where I was treated has about 28 doctors and ten NPs. My NP was a MSN, with over a decade of experience in the field, and a long list of certifications. I went in for an appointment expecting to see her one day, but learned that she had quit: She could not deal with cancer any longer, and was going to re-train in some other nursing field that would be emotionally less difficult.

I am surpried that a place like Anderson would not provide you with a patient manager. Our local hospital, which is not famous, does this for all oncology patients, and allows the patient to meet with a group of care givers periodically. I have always been of the opinion that Sloan and Anderson are no better than most other, smaller practices, although I have no formal evidence to back this up. I think that if I were you, I would directly and explicitly explain my issues with your doctor, and if he cannot promise specific fixes, then I would in fact go elsewhere. They want a million dollars, but do not have the time to talk to you ? That is what it boils down to.

I have heard of Cancer Centers of America, which advertise that they have a very holistic treatment approach, and are always thinking of the patient's welfare. I have never dealt with them, and the commericals may be just slick advertising, or it may be true. I do not know if you have considered them. I believe that have four or five location in the US.

As regards your symptoms, I was on r-abvd for six months. I developed breathing problems, severe neuropathy (lost feeling in my hands and feet), lost my sense of taste, lost my appetite, felt like I had the flu all the time, and (like you) had severe fatigue. I slept about 18 hours per day, and could only walk about 100 feet without sitting down. Rituxan is famous for the joint and muscle pain -- classic. The fatigue could be the disease or the med, since one of the hallmarks of lymphoma is fatigue. I was so tired before diagnosis that after a good night's sleep, by 10:00 AM I was having to pull off onto the shoulder of the Interstate and sleep for 30 minutes or more (I drove a company service car). The double vision sounds neurological. I would ask the doc about that one.

I do not know if any of this is helpful, but I do hope that you get the answers and sort of treatment that you are searching for. You may have to get pushy to get what you want. Demand answers to your concerns. It is easy to get lost in the shuffle.

max

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GKH
Posts: 288
Joined: Jul 2012

Thanks for the very thoughtful and helpful reply. I have a good onc but he shuts down when I ask about the other symptoms. His nurse talked to me and basically said he thought I should take it somehere else, maybe a neurologist. I believe that few non cancer doctors know much about cancers but that the inverse is also true - few oncologists know or care about other symptoms. As far as Anderson goes, they are good but frankly I felt cheated. I spent four days there and doubt I spent more than 10 minutes with the physician. Well maybe a total of 12-15 minutes for the first and last days combined. I walked away with a $47,800 bill of which the insurance covered everything but $650 + about $1,400 in travel. I am going to write my patients advocate and see if I can come back for a more interactive exam. They wanted me to come back for a PET scan as my insurance would only pay for a CT in April. The CT scan showed 9 small suspicious spots which they wanted to follow. However the insurance refused to pay for a PET again in September. Their policy was 1 per year max. I just went on medicare so I plan to get Anderson to run that through and see if it will pay for a PET.

Thanks again and best of luck to you. I really appreciate you taking time to write me.

Garry

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1022
Joined: May 2012

Always glad to contribute !

It is pretty sad that your carrier has a one-Pet per year rule, if the doc recommends that you need another. But, I have heard of worse. I have sat for infusion next to folks who were refused even Enmed for anti-nausea by their insurance company. And folks who were refused neulasta, which can be life-saving.

I read below that you will stay with Anderson for now. My cousin's brother-in-law went there for years with late Stage IV prostate, and they said that he survived many more years than expected due to the fine treatment there.

I am a very quiet person. But, making your dissatisfaction known and demanding fuller time from a doc should get results. Insist on it. At my first visit with my oncologist, he gave me a stack of data sheets about an inch thick: Detailed reviews of my strain of lymphoma, data sheets on every drug, side-effects, statistics, you name it. My group was a branch of US Oncology, which has 1,400 MDs participating nationwide. They focus on community-based clinics, almost a "franchise" sort of thing, but it gets them into their clinical trials and databases. I was very well pleased.

Good luck with all of this stuff. All of the members are here regularly. I check in about every other day or so.

max

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jimwins's picture
jimwins
Posts: 1984
Joined: Aug 2011

Hi Gary,

Gosh, between you and Max my mind is flooded with so many thoughts right now
and I'm just waking up and having coffee so forgive me if I'm not very organized
in my response(s).

You and Max are similar in that you are logical type of people and you state
you "prefer facts to emotions" in your profile. In addition to the flood of info
that comes with all of this, you are also processing (consciously or sub-consciously)
a wave of emotions from this experience. Coupled with the "flood", is the diminished ability to "process" due to the disease symptoms and/or treatment side effects.
It's frustrating to say the least.

I lived in Houston for many years and MD Anderson has an excellent reputation.
I took a quick look at their website and there are many resources there. You might look into "patient advocacy" (looks like it may be staffed by well screened and trained volunteers). Where I was treated and continue to visit, they have staff to help navigate patients through their system so something like that might help also.

Regarding your symptoms and from what I've read, they could all be side effects
of Rituxan but the info suggested many of these side effects usually occur early
in treatment or during first infusion and diminish or disappear. The vision issue
could be cause for alarm if related to Rituxan.

To simplify things, it might help to have one major source you trust with your questions
and concerns (your oncologist preferably but PA's and NP's are good sources too).
It may help to keep a list/diary of your symptoms, concerns and questions and organize this for your appointments. Do the symptoms improve in between treatments? If so,
it points more strongly toward the Rituxan - right?

In general, we are in an "information overload" society thanks to wonderful technology. When I'm confronted with this overload, I usually step back and away for a bit and strategize. I try to simplify and pick a few targets and focus on those and narrow my sources to hopefully the best/most trusted to avoid distraction and confusion (not always easy).

I'm not sure if anything I've written is of much help - I'm having a difficult time
waking up this morning :). I do hope you get answers and get your issues resolved.
Keep us updated.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)

GKH
Posts: 288
Joined: Jul 2012

Your recommendation of Anderson is one I value. I am going to give them another go. My first grandchild is due next week so its going to have to waith for a while. Think I will shoot for early December.

All my best, Garry

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1022
Joined: May 2012

Jim,

The coffee you drink will clear any fog ! (Well, except perhaps chemo fog.) I rode submarines for about six years, and the submariners' diet consists of three staple items: Coffee, beer, and cigarettes. I have been on ops during which I know I averaged 30 cups per day. I saw a study released this week which says that coffee can delay or reduce the symptoms of Azlheimer's, and many studies over ther last several years have indicated that it can do the same for Parkinson's. I follow those studies, since I have REM Behavior Disorder, a sleep condition that has a very high linkage to developing Parkinson's. I would have never know of the REM issue if I had not had a sleep lab/ CPAP evaluation.

Now, I just need to hear of how beer helps !

max

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jimwins's picture
jimwins
Posts: 1984
Joined: Aug 2011
Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1022
Joined: May 2012

Info I shall study and treasure !

miss maggie
Posts: 929
Joined: Mar 2010

Dear Gary,

I see right now you don't have an internist. It might be a good idea to find such a doctor.
I am not saying he would be able to help you right now with your symtoms. I think the
suggestions others pointed out would be the way to go right now.. I am sorry I couldn't offer the help you need.

I have been going to my internist since 1991. He knows me inside and out. By having an
internist, or even a doctor in general practice is such a good idea to have. You develop
a relationship through the years. Hopefully he would be able to spot when something isn't
quite right with your body. He would also advocate for you when needed. In my case, my
iron levels were a bit low. I was sent for not one, but two tests to rule out internal bleeding.

It's never too late to find such a doctor. Perhaps a family member, or a dear friend would
be able to put you in touch with such a doctor. Rather then go through the yellow pages.

Good luck on your endeaver. Love Maggie

NANCYL1
Posts: 225
Joined: Jun 2012

I went for a routine checkup to my Internist in January of 2012, and had a blood test. She discovered that my white blood cells were high in number and sent me immediately to an Oncologist at a nearby Cancer Center. She is my First Line of Defense, but of course, not the doctor to take care of Lymphoma. I am on Rituxan.

Nancy.

GKH
Posts: 288
Joined: Jul 2012

Good advice.

Garry

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