Any tips on alternative to MD Anderson?
I plan to go to a major NCI affiliated cancer center this fall for a checkup/PET/2nd opinion. My two daughters live in Texas so MD Anderson comes to mind, killing two birds with one stone so to speak. My concern is that when I went to MD Anderson April 2012 I was extremely unhappy with the experience. I found it to be a very confusing, hectic, almost frantic “hurry up and wait” sort of place. Like a tower of Babbel and not unlike Grand Central Station in NY at rush hour. For example they emphasized strongly that I bring copies of all my CDs from scans I had. There were a bunch so it was difficult but I spent many hours collecting 10 CDs and all the written reports. My “social worker” took me to the radiology department the first day to deposit them so “they won’t get lost”. Well after my scans the report said there were no reference scans available. I was quite upset and went to the radiology department to find them. Everyone there including the lady I surrendered them to denied any and all knowledge of their existence. To say the least I was upset. This was not the the only incident, but for brevity I will mention only one more - my departure. I was told in person and then later by a phone call to my hotel how important it was that I be there no later than 7 AM for my case review and results. I arrived at 6:45 AM. At 11:30 I was finally called. The “Rock Star” oncologist was not available so I was debriefed by a lady cardiologist (I have no heart issues) who was, that very day, leaving for her first job in Michigan. After finally getting my name right, she simply read me a short letter stating there was NED but recommending a follow-up regimen of Rituxan, which I was already on. She spent the last 20 minutes of her time with me talking about herself and her move to Michigan. She gave me her contact info and said to be sure to call if ever in need of a cardiologist. Yuck!. But the bright side is this “only“ cost me $58,000 not including travel expenses. Never again will this happen. Never will I respond to their weekly mailings asking for donations.
Sorry for the rant. I am considering this time going to the UVA Cancer Center in Charlottesville Virginia. Also my sister had good luck at Duke in NC. Another one I have heard is good is Vanderbilt in Nashville. I would much appreciate anyone sharing their experiences with these or any other good places for a second opinion. I wish there was a place in the Dakotas. Just wind and cold, no commotion. Paradise. Also I love Alaska. Does anyone have experience with cancer treatment there? It has no NCI affiliated centers. I am also looking into the Czech Republic But fear the language barrier. Those guys are really sharp. Thanks for any comments.
Comments
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SCCA
You could try the treatment arm of the Hutch in Seattle. Seattle Cancer Care Alliance. #1 nationally in adult specialty care.
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Centers
Shady, among cancer centers in the southeastern United States, Emory is among the best. It's were President Carter went for his brain tumor a few years ago. You mentiond Duke, also outstanding. But I'd way rather be treated in the Duke area than in Atlanta, which is an endless ghetto sprawl.
The closest thing to a world-class oncology center near the Dakotas is probably The Mayo Clinic in Rochester, Minnesota.
The Moffitt Cancer Center, Tampa, is also world-class and a leader in research.
It is in Los Angeles, but City of Hope is also an elite resource; they are the people who developed Rituxan.
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Thanks POpo18guy said:SCCA
You could try the treatment arm of the Hutch in Seattle. Seattle Cancer Care Alliance. #1 nationally in adult specialty care.
Seattle is one of the places I am looking at. May ask your help gathering info if that is ok. I looked up your Dr Shustov. He was educated in Crimea. I have had great relationships with several people from that part of the former Soviet union. Put into the right environment they produce world class doctors and do cutting edge research. No idea how the Russian seizure of Crimea will affect that, if at all.
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Thanks MaxCenters
Shady, among cancer centers in the southeastern United States, Emory is among the best. It's were President Carter went for his brain tumor a few years ago. You mentiond Duke, also outstanding. But I'd way rather be treated in the Duke area than in Atlanta, which is an endless ghetto sprawl.
The closest thing to a world-class oncology center near the Dakotas is probably The Mayo Clinic in Rochester, Minnesota.
The Moffitt Cancer Center, Tampa, is also world-class and a leader in research.
It is in Los Angeles, but City of Hope is also an elite resource; they are the people who developed Rituxan.
I am pretty much aware of those places except for Moffit. a former relative is an MD and is checking out something at Vanderbilt.What I would really prefer is just to pay a good doctor to spend a a couple of hours going through my mountain of records and looking for something not so obvious. I am not interested in a bunch of tests followed by a 10-minute office visit. I am in quite a bit of pain and cannot sleep which my doc says is probably from overdoing it with travel and outdoor activities. My last chemo was in late June so I am assuming its not that. Anyway, Virginia has an early 3-day bear season October 1-3 and my grandaughters birthday is tomorrow. I plan to participate in both rather vigorously. Getting a bear is not important, getting outdoors is.
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As to Alaska, I know of oneShadyGuy said:Thanks PO
Seattle is one of the places I am looking at. May ask your help gathering info if that is ok. I looked up your Dr Shustov. He was educated in Crimea. I have had great relationships with several people from that part of the former Soviet union. Put into the right environment they produce world class doctors and do cutting edge research. No idea how the Russian seizure of Crimea will affect that, if at all.
As to Alaska, I know of one Alaska native who came to SCCA for leukemia treatment, and a fellow who comes to Seattle for skin lymphoma treatment. Dr. Shustov specializes in T-Cell Lymphomas, but treats all types. In addition, if your case is challenging, it would be good to look up clinical trials and the centers they are being held at. SCCA is one such center. www.clinical trials.gov can help there. Let me know what you need and I will try to find it.
EDIT: Typos corrected.
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Gators
Shady,
The first gator season in NC in 40 years is about to end. So far, not one gator taken. The hunters say there aren't any. NC DNR is not sure why, but the hurricane is suspected to have had some sort of effect; maybe they are just not active.
SC is swarming with gators, just exploding.
I'm a serious Second Amendment guy, but not much of a hunter. I don't think I could or would ever kill a bear. Enjoy that time in the forest. Three Dog Night's Out in the Country is one of my favorite songs, ever. Look it up and play on YouTube if interested. Two of the lead, founding members died of cancer, one of Lymphoma, in the last few years -- sort of increased my bond with them.
max
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Yeah, no gators!Gators
Shady,
The first gator season in NC in 40 years is about to end. So far, not one gator taken. The hunters say there aren't any. NC DNR is not sure why, but the hurricane is suspected to have had some sort of effect; maybe they are just not active.
SC is swarming with gators, just exploding.
I'm a serious Second Amendment guy, but not much of a hunter. I don't think I could or would ever kill a bear. Enjoy that time in the forest. Three Dog Night's Out in the Country is one of my favorite songs, ever. Look it up and play on YouTube if interested. Two of the lead, founding members died of cancer, one of Lymphoma, in the last few years -- sort of increased my bond with them.
max
Hope to be sitting on a beach in NC very soon and quite happy to not see any gators. Unless of course they eat these guys: https://www.usatoday.com/story/news/2018/09/28/north-carolina-mosquito-outbreak-florence-hurricane-floodwaters/1460237002/
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MDA
Hi Shady,
Just wanted to say that if you end up having no choice but to go to MD Anderson, I would hope you will see a big change. In our 4 visits there we did not experience anything like you did. True the first time was a little ominous but there was always someone to ask, in fact several times ones we asked stopped what they were doing to escort us to where we needed to go. We found everyone to be very professional and caring. I am sorry for the nightmare you went through, but I’m hoping that if that becomes your only option, you will find a whole different scene. You have gotten some good suggestions and another one is Weil Cornell in NY.
My best, Becky
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Bears are safe with me hunting!Gators
Shady,
The first gator season in NC in 40 years is about to end. So far, not one gator taken. The hunters say there aren't any. NC DNR is not sure why, but the hurricane is suspected to have had some sort of effect; maybe they are just not active.
SC is swarming with gators, just exploding.
I'm a serious Second Amendment guy, but not much of a hunter. I don't think I could or would ever kill a bear. Enjoy that time in the forest. Three Dog Night's Out in the Country is one of my favorite songs, ever. Look it up and play on YouTube if interested. Two of the lead, founding members died of cancer, one of Lymphoma, in the last few years -- sort of increased my bond with them.
max
Tons of bears around. They are very pesky at my place in the mountains. Back in May I had one climb into the bed of my pickup. They have broken into my screened in porch twice. They recently broke into the pen and ate 9 of my neighbors rabbits. We have two 3-legged dogs in the area from bear encounters. As my wife says, at our place when things go bump in the night, its probably NOT your imagination. Some of these guys are biiiiig! However my feeble attempt at hunting was in a different state, Virginia (https://www.dgif.virginia.gov/wma/highland/). VA and NC have the largest black bears in the world. They are especially large in coastal NC. I normally don’t hunt bear. Since Virginia had a special early 3-day season to try thin them out I decided to go out. Except for Alaska I hunt only muzzleloader and always hunt alone so I only shoot close to the truck. So imagine a cancer patient with 1/2 inch long hair and armed with a single shot muzzle loader sitting in a folding chair on the side of a mountain waiting for a bear to walk by. As I said the bears are relatively safe! Serious bear hunters own dogs. Could have easily gotten a deer though but the season is closed. Please forgive the off topic rambling. In the future I will PM this type of conversation.
edited for typos
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Duke
Hi Shady,
During my treatments with R-CHOP, I had a PET scan which showed new lymphoma activity, suggesting my disease may be refractory. My doctor wanted me to go for a consultation. He recommended Vanderbilt, UNC-Chapel Hill, or Duke. I chose Duke and couldn't have been more pleased.
It was at Duke that my diagnosis changed. I didn't have any testing or scans there. My local oncology office sent all my medical records, including CD's of scans and pathologies. I knew as soon as the doctor came in that he had studied my case--he was well-informed about me. He was with us for over an hour and we felt very confident when he recommended I complete the R-CHOP treatments. (There were discussions of SCT if the R-CHOP failed).
When my pathologies were studied at Duke, they diagnosed me with Follicular Lymphoma rather that the Marginal Zone Lymphoma I was originally diagnosed with. Because they had a different opinion, they did additional tests (FISH) and stood by their diagnosis. My local doctor went back to the original pathologist, who restudied my pathology and agreed with Duke.
My lymphoma did go into remission and I didn't need to go back to Duke. But I wouldn't hesitate if I things change.
Rocquie
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Thanks RocquieRocquie said:Duke
Hi Shady,
During my treatments with R-CHOP, I had a PET scan which showed new lymphoma activity, suggesting my disease may be refractory. My doctor wanted me to go for a consultation. He recommended Vanderbilt, UNC-Chapel Hill, or Duke. I chose Duke and couldn't have been more pleased.
It was at Duke that my diagnosis changed. I didn't have any testing or scans there. My local oncology office sent all my medical records, including CD's of scans and pathologies. I knew as soon as the doctor came in that he had studied my case--he was well-informed about me. He was with us for over an hour and we felt very confident when he recommended I complete the R-CHOP treatments. (There were discussions of SCT if the R-CHOP failed).
When my pathologies were studied at Duke, they diagnosed me with Follicular Lymphoma rather that the Marginal Zone Lymphoma I was originally diagnosed with. Because they had a different opinion, they did additional tests (FISH) and stood by their diagnosis. My local doctor went back to the original pathologist, who restudied my pathology and agreed with Duke.
My lymphoma did go into remission and I didn't need to go back to Duke. But I wouldn't hesitate if I things change.
Rocquie
my sister had nothing but praise for Duke. However I have decided to go to Vanderbilt, partly because my son and grandchildren live near there. I get R on Monday, infusion #32. I would like to find an alternative. Can you OD on Rituxan? A big issue with me is difficulty in getting a biopsy.
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ODing on Rituxan
Shady next Monday I will be having my 54th dose of Rituxian. Have not found an answer to your question on overdosing with this drug. I have been receiving it since January 2008, first for my NHL and recurrance in 2009, and since I finished chemo in 2010 receiving 4 doses a year for my RA. I'm thinking my body can't handle it any more as although it controls the RA it makes me feel ill and I have joint pain from it for about a month after the infusion now. The manufacturer hasn't got a clue at this point.
Feeling ill could be caused by my 2 new diseases this year. Polycythemia Vera, a bone marrow cancer, and just recently diagnosed with ulcerative colitis. So beween the blood letting for PV because i'm refusing chemo, the steroids for the UC and the Rituxian I've been feeling like crap. But my lymphoma is still in remission.
The Rituxian has done a number on my immune system. All the Ig numbers are super low, I can not get tyders on any immunizations at this point. I receive the shots, do more tyders and shows I have no immunization. Good thing I don't get sick, just feel sick all the time.
Hoping for the best for you Shady in where ever you decide to go and what ever you finally chose to do.
Leslie
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Rituxan
Shady,
I don't think it is possible to OD on Rituxan, since it is a chimaeric monoclonal antibody produced by cultured hamster cells, not per se a "drug". As you well know, it targets CD20-expressing lymphocytes. It does not differenciate cancerous/non cancerous cells - it just attaches to the CD20 on the surface of all CD20-expressing lymphocytes and assists in their destruction. In so doing, it helps improve and prolong response to chemotherapy- which is why it is so precious for indolent lymphoma patients: it delays relapse.
However, repeated infusions/injections can end up causing immune system imbalance, which is why it is rarely administered ad infinitum. As with "traditional" chemotherapy drugs, doctors have to arbitrate between benefits and risks for the patient.
I have not had nearly as many Rituxan doses as Leslie (or yourself, if I remember correctly), but each dose was immediately followed by painful skin symptoms, and my IgG level was too low, making me prone to shingles - for which I was kept on Valacyclovir for many months while on post-R-CHOP maintenance.
Now, six months after my last maintenance Rituxan injection, my IgG level is rising, and I have hopes that it will become normal at some point; my skin issues are subsiding; and I remain in remission from my Follicular Primary Bone Lymphoma.
Not all is rosy, since my original lesions are still pretty much the same on imaging, and I am still struggling with pain and fatigue. But I believe it was worthwhile to go through the two-year maintenance, if only to consolidate treatment response and afford me some time to regain strength before the next round.
Kind regards.
PBL
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BiopsyShadyGuy said:Thanks Rocquie
my sister had nothing but praise for Duke. However I have decided to go to Vanderbilt, partly because my son and grandchildren live near there. I get R on Monday, infusion #32. I would like to find an alternative. Can you OD on Rituxan? A big issue with me is difficulty in getting a biopsy.
Hopefully, Vanderbilt can get a good biopsy for you.
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Thanks allPBL said:Rituxan
Shady,
I don't think it is possible to OD on Rituxan, since it is a chimaeric monoclonal antibody produced by cultured hamster cells, not per se a "drug". As you well know, it targets CD20-expressing lymphocytes. It does not differenciate cancerous/non cancerous cells - it just attaches to the CD20 on the surface of all CD20-expressing lymphocytes and assists in their destruction. In so doing, it helps improve and prolong response to chemotherapy- which is why it is so precious for indolent lymphoma patients: it delays relapse.
However, repeated infusions/injections can end up causing immune system imbalance, which is why it is rarely administered ad infinitum. As with "traditional" chemotherapy drugs, doctors have to arbitrate between benefits and risks for the patient.
I have not had nearly as many Rituxan doses as Leslie (or yourself, if I remember correctly), but each dose was immediately followed by painful skin symptoms, and my IgG level was too low, making me prone to shingles - for which I was kept on Valacyclovir for many months while on post-R-CHOP maintenance.
Now, six months after my last maintenance Rituxan injection, my IgG level is rising, and I have hopes that it will become normal at some point; my skin issues are subsiding; and I remain in remission from my Follicular Primary Bone Lymphoma.
Not all is rosy, since my original lesions are still pretty much the same on imaging, and I am still struggling with pain and fatigue. But I believe it was worthwhile to go through the two-year maintenance, if only to consolidate treatment response and afford me some time to regain strength before the next round.
Kind regards.
PBL
like Leslie I am almost always having joint pains, mostly knees and wrists, and fatigue. Some days are better than others but I keep pressing on, as my wife says “overdoing it”. I had my first ever bout with shingles two weeks after my last Rituxan infusion. Fortunately I had both vaccines a few years back and it went away in about 2 weeks. Pretty minor really when compared to what my Mom had. It was on my chest and left arm. Doc gave me a 10-day dose of famcyclovir. My lymphoma lesions are deep in my chest near my aorta and biopsy is tricky and dangerous. Right now I would feel much better if I could sleep. I have severe insomnia which contributes to fatigue. I will just deal with it. What other choice do I have. Thanks for the inputs. I really appreciate it.
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CorrectPBL said:Rituxan
Shady,
I don't think it is possible to OD on Rituxan, since it is a chimaeric monoclonal antibody produced by cultured hamster cells, not per se a "drug". As you well know, it targets CD20-expressing lymphocytes. It does not differenciate cancerous/non cancerous cells - it just attaches to the CD20 on the surface of all CD20-expressing lymphocytes and assists in their destruction. In so doing, it helps improve and prolong response to chemotherapy- which is why it is so precious for indolent lymphoma patients: it delays relapse.
However, repeated infusions/injections can end up causing immune system imbalance, which is why it is rarely administered ad infinitum. As with "traditional" chemotherapy drugs, doctors have to arbitrate between benefits and risks for the patient.
I have not had nearly as many Rituxan doses as Leslie (or yourself, if I remember correctly), but each dose was immediately followed by painful skin symptoms, and my IgG level was too low, making me prone to shingles - for which I was kept on Valacyclovir for many months while on post-R-CHOP maintenance.
Now, six months after my last maintenance Rituxan injection, my IgG level is rising, and I have hopes that it will become normal at some point; my skin issues are subsiding; and I remain in remission from my Follicular Primary Bone Lymphoma.
Not all is rosy, since my original lesions are still pretty much the same on imaging, and I am still struggling with pain and fatigue. But I believe it was worthwhile to go through the two-year maintenance, if only to consolidate treatment response and afford me some time to regain strength before the next round.
Kind regards.
PBL
i understand what rituxan is and what it does to lymphocytes expressing CD20. The question to me is what else does it do? There is no clear answer that I have seen to that question.
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Unclear - to say the least
Of course, this is a very interesting question. I do not know if anyone out there would be 100% able to answer that question...
Being produced from cells from another mammal species, Rituxan causes allergic reactions (and occasionally deadly ones) - that much, everybody knows. Patients' bodies are "forced" to accept those foreign proteins, with antihistamines to keep the reaction to the lowest possible level. They become habituated to Rituxan. But there still seem to be some signs of reaction.
So, we might say that Rituxan doubly tampers with our immune system: by killing off certain types of cells and thus weakening our immune defenses; and by "irritating" the part of our immune system that causes allergies and/or autoimmune-like reactions.
In my personal experience, repeatedly pointing out the symptoms that pretty clearly seemed to be resulting from the Rituxan infusions/injections brought about absolutely NO reaction in my hematologist (and I am under the impression that this is not specific to that indinidual hematologist). I do not know for sure if that was due to his absolute cluelessness, or if it was just pointless in his view to spend any time discussing something that couldn't be helped.
In the end, we do not really have many other options to keep us alive and in (relative) good health, possibly for many years. Of course, quantity versus quality of life must be carefully weighed, and that is what our doctors do for us - with the help of their more precise understanding of these medications and the workings of our bodies - when they make treatment decisions. As medically uneducated individuals, we are basically left with the choice of trusting them or refusing treatment.
Cheers,
PBL
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Thanks
i cannot disagree with anything you say. However I believe we always have choices in that there are now several similar treatments to Rituxan. I have to wonder how they compare regarding side effects. Are there any ill effects from switching from one to the other? I know that Rituxan improves quality of life, I am certain of that. However, even though progression free survival increases, every study I have seen shows little or no improvement in overall survival. I take that to me mean that lifespan is minimally improved but quality of that life is enhanced. A very good thing.
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