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Any tips on alternative to MD Anderson?

ShadyGuy
Posts: 429
Joined: Jan 2017

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.

po18guy
Posts: 1011
Joined: Nov 2011

You could try the treatment arm of the Hutch in Seattle. Seattle Cancer Care Alliance. #1 nationally in adult specialty care.

ShadyGuy
Posts: 429
Joined: Jan 2017

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.

po18guy
Posts: 1011
Joined: Nov 2011

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.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

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.

 

ShadyGuy
Posts: 429
Joined: Jan 2017

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.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

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

Evarista
Posts: 269
Joined: May 2017

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/

ShadyGuy
Posts: 429
Joined: Jan 2017

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

illead's picture
illead
Posts: 847
Joined: Aug 2012

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 

ShadyGuy
Posts: 429
Joined: Jan 2017

thats good to know.

ShadyGuy
Posts: 429
Joined: Jan 2017

i have decided to go to Vanderbilt for my next scan and a second opinion. Anyone on this board been there?

Rocquie's picture
Rocquie
Posts: 836
Joined: Mar 2013

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

 

ShadyGuy
Posts: 429
Joined: Jan 2017

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.

Rocquie's picture
Rocquie
Posts: 836
Joined: Mar 2013

Hopefully, Vanderbilt can get a good biopsy for you.

 

yesyes2
Posts: 590
Joined: Jul 2009

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

PBL
Posts: 185
Joined: Jul 2016

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

ShadyGuy
Posts: 429
Joined: Jan 2017

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.

ShadyGuy
Posts: 429
Joined: Jan 2017

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.

PBL
Posts: 185
Joined: Jul 2016

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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

PBL,

I found this post of yours (10-11-18) to be one of those remarkable summations that perfectly assesses an issue: oncologist's reactions to routine side-effects.  You stated that his 'yawn-reaction' to questions was derived not from personal cluelessness, but a trade practice.  I feel you are exactly correct.

My own hematologist was exactly the same.  I had lab resuls two days before each infusion (CBC and Metabolic Panel), and he had obviously gone through them in detail,  even personally highlighting my copy himself regarding what he wanted to point out to me.  Yet he never marked my liver enzymes, which stayed two to two-and-a-half times above normal; the one time I asked him about it directly, he said "They will drift back down after chemo ends." He was correct.  My blood pressure was often astronomical when I arrived for the bi-monthly consults, but no reaction from the RNs or the doctor himself.   I even had long-term, serious breathing impairment. He DID do a CT to check this, but thereafter said that we just had to finish all of the meds.  After I lost 15% of body weight, he refused to lower dosing, saying "we have to hit this thing hard."

I know he was not clueless; board certified in hematology, medical onology, internal medicine, pallative care, and one other field.  A Stanford man.  Definitely not clueless.

After a few year's experience, these doctors learn what they can afford to fret over, and what they cannot.

ax

ShadyGuy
Posts: 429
Joined: Jan 2017

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. 

Evarista
Posts: 269
Joined: May 2017

I've struggled with phrasing this, so if I don't make sense or if anyone thinks that I don't have it sort of right, please feel free to jump in.  Here goes:

Many chemotherapeutics are directed at specific cellular pathways and have their effect by acting on those pathways.  If the pathway is not in use, the chemo has nothing to act on.  The easiest example I can think of is cell division:  if a cell is dividing, a chemo that kills dividing cells can do so.  But if a cell is not dividing, the chemo has little or no impact.  This is why (in part) rapidly growing tumors are sometimes easier to knock out than slow growing ones. That new drug you were asking about in your other thread, Shady, can unblock a blockage in programmed cell death, allowing a cell on that pathway to progress to dying.  But a cell that is not on it's way down that pathway will not be killed by the drug, at least not via that mechanism.

The trouble with tumor cells is that they do not always behave the way that we would like them to. They can and do go "dormant" making them poor targets for many chemos.  If they "wake up" later on and there is no chemo around to knock them out, we relapse.  But now we have Rituxan, which is extremely well-tolerated relative to other stuff and which can be administered over a long period of time.  This agent acts on the outside of the cell using mechanisms that are not dependent on the tumor cell machinery, so it can act on a dormant/quiescent cell.  I say "Hurray for Rituxan!" because now we have something that can be kept in our system and catch any escapees or reawakees if you will  Yes, there may be problems and not everyone will tolerate it, but recall that rheumatoid arthritis patients stay on it for a very long time.

I am not on Rituxan but have had many of the same issues as Shady over the past year and a half, particularly fatigue and joints.  But I feel increasingly out of the woods.  Approaching my 70th birthday and took my first hikes in 2 years last week.  Normalcy is returning.  There is no question that if I overdo it, I regress.

I agree that PBL's comments were very spot on.

ShadyGuy
Posts: 429
Joined: Jan 2017

but am hoping for the day we have a biologic which targets only cancer cells, unlike Rituxan which targets all cellss expressing CD20, cancerous or healthy. I have continued looking at the other new drug mentioned and it seems to truly be a drug of last resort due to extreme and sometimes deadly side effects. It is what it is! No choice but cope with it. Living my life to its fullest. Just concerned about shingles returning after my rituxan infusion tomorrow.

PBL
Posts: 185
Joined: Jul 2016

Hi All,

There is no doubt in my mind that all cancer research teams around the planet are actively looking for that silver bullet - the drug that targets cancer cells only, to the exclusion of all others. 

Until they do find it, Rituxan may be the next best thing. To phrase the above comments differently, it is, a bit like democracy, the least worst solution. At least, medical teams have twenty years' experience handling it, and, although it does not seem to offer a longer survival, it can be used repeatedly - unlike "traditional" chemotherapy drugs - and does allow us to keep on keeping on for as long as that lasts. May I add that Rituxan lingers a long time in our blood, and therefore, I am not sure that switching to some other monoclonal antibody would solve any adverse effect problems - I would suspect it might in fact make things worse by piling on more adverse effects.

To further Evarista's quite articulate (as usual) "random thoughts", I would add that combination chemotherapy regimens have been elaborated precisely because each drug only acts on a specific weakness in the armour of cancer cells.

Max, based on your anecdote, I believe your hematologist and mine must have learnt the same "tricks of their trade"! I have heard my hematologist speak at a medical conference and obviously have no doubt about his competences and knowledgeability. It just takes a bit of adjusting to medical men's mode of communication - which the generally long survivorship of lymphoma patients affords us...

Shady, you may simply need to remind your hematologist that you've had a bout of shingles after your last infusion, so that s/he can look more closely at your immunoglobulin levels, and put you on antiviral prophylaxis (if you'll have it) in order to avoid another outbreak.

PBL

 

Evarista
Posts: 269
Joined: May 2017

As a CD19-negative, CD22-low "double-expressor", I am hoping for Myc,Bcl-2, and/or BCL-6 CAR-T cells at some point.  Don't know if that is a possibility, but one can hope.

ShadyGuy
Posts: 429
Joined: Jan 2017

i took one Acyclovir per day and some really strong antibiotic (bactrim) on MWF the whole time I was on chemo and 30 days after. He was more concerned about pneumonia than shingles. The entire time I had an awful (I really mean aaaaaawful) sinus infection. It lasted almost 5 months. The ENT gave me pennicillin which the infection ignored. A self prescribed 10-day regimen (3 per day) of leftover bactrin finally knocked it out about 6 weeks after chemo ended. It was really nasty.

PBL
Posts: 185
Joined: Jul 2016

From what I've gathered (heard and read), I have come to the conclusion that I'd have to have exhausted every other possibility before considering that. As I understand it, it may be very promising, but right now, it is not for the faint of heart. Hopefully, after some more tinkering, they may have more acceptable statistics... Talk about adverse effects!

PBL

CritterMamaLori's picture
CritterMamaLori
Posts: 42
Joined: Feb 2018

Hey Shady, so my local oncologist who comes for clinics to my little town is out of Knoxville decided to send me to Sarah Cannon Cancer Center because he thought I would get better care there than Vanderbilt because of logistics of the chaos of the university. It is very close to Vanderbilt. I went for consult earlier than my appt because my neck swelling. I couldn't even partcipate in an approved clinic trial for CART due to the wait time. I was immediately admitted and had one(of 2) round of RICE in prep for my stem cell transplant that is scheduled for the month of Dec. I was very well taken care of. I love my new oncologist who is highly spoken of thru out the hospital. I have an actual team also. Just to warn you Nashville is a crazy town an during rush hour expect to take 2 hours to go 20 miles. We weren't quite prepared for that. Wanted to tell my experience in Nashville since you decided on Vanderbilt. Sarah Cannon (aka Minnie Pearl) Cancer Center is dedicated to cancer. All the best to you and the road you decide to travel. Lori

ShadyGuy
Posts: 429
Joined: Jan 2017

I will certainly check it out! Yes, Nashville is a boom town with lots going on 24/7. Getting around can be a challenge.

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