Any tips on alternative to MD Anderson?

Max Former Hodgkins Stage 3

PBL said:

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

Summary

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

Evarista

ShadyGuy said:

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. 

Some random thoughts

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

Yes I agree

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

Silver bullet

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

PBL said:

Silver bullet

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

 

New CAR-T's?

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.

PBL

Further down the road, maybe...

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

ShadyGuy

PBL said:

Silver bullet

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

 

Prophylaxis

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.

CritterMamaLori

What I am doing...

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

CritterMamaLori said:

What I am doing...

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

Thank you!

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