My CLL Trail

I am a 63 year old physician, retired from pracice, because of having CLL, but still working for a company that creates web sites for the pharmaceutical industry. All about my journey with CLL

Saturday, October 12, 2013

jeu terminé (Game over...)

 I am in home hospice. The transformed leukemia relapsed again; 
after two high doses of Cytoxan, with theonly remaining drugs likely to be more toxic than my wife Cynthia an I made the decision with onco team to quit

I may have a few months but it could be just days

 Finding solace through Friends (Quaker) and Buddhist prayer and spiritual practice

Keeping candy, I can slowly suck hard candy; keeping spirit I can still smile and wear  my team's colors


Posted by Friendly Curmudgeon at 12:55 AM 5 comments:
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Wednesday, August 21, 2013

The adventure continues

So, I went to Univ of Penn hospital ER, per instruction of my onco team there, on Monday afternoon, they were worried about CNS lymphoma relapse as was I, but there were no beds available yet in onco floors.

The issue was almost total lack of voice and rapid re growth of presumed Richter's transformed node in neck (see prior post). In ER, they did (repeatedly, unfortunately) nasal direct laryngoscpy ( see http://www.fauquierent.net/endo.htm) and found possible obstruction above the vocal cords and maybe unilateral cord partial paralysis. ENT was very worried that my airway would close off and wanted to intubate.right away. When we ( me and my stepdaughter recent RN grad but a doctor in her thinking patterns!) pressed for trying chemo for presumed CNS lymphoma first, the ENT team brought their attending down who noticing the apparent obstruction above the vocal cords ordered a stat CT which showed a large mass (possible lymphoma) causing the obstruction. So plan became intubate, go to ICU overnight and get tracheostomy tube placed and biopsy mass in AM. But anesthesia wanted to intubate in more controlled setting of OR so decided to place trach that night. 

Operation went well, they got biopsy of mass, placed trach tube ( see http://www.mayoclinic.com/health/tracheostomy/MY00261) and noted much pus below ( later said to be an obstructive tracheitis) I went to ICU and woke up with my new tube and on ventilator which they weaned me off by mid-morning.

I can't eat because of mass and new tube so got nasal gastric tube for liquid nourishment. Onco team has me on Decadron to rapidly shrink nodes (hopefully mass as well, pathology report pending). More chemo will be given once down to onco floor and pathology back.

I feel pretty good but cough from tracheitis ad pus needs to suctioned fairly frequently so need to stay in ICU for a few more days...

I know, more bad news, but this admission beats coma, seizure, etc of last admission when had lymphoma in brain!


Posted by Friendly Curmudgeon at 2:06 PM No comments:
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Sunday, August 18, 2013

Left cervical node huge, again


And I have no voice, just like my most recent admission for CNS Richter's lymphoma, which involved a month in ICU and a few weeks after...might not have many options for treatment except maybe radiation to node and repeat intrathecal ( into spinal fluid) drugs
Posted by Friendly Curmudgeon at 6:10 PM No comments:
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Sunday, May 26, 2013

Possible progress, peripheral neuropathy, pills, and Penn's patient portal

I had fun with using "p" so often but it is all about my last couple of weeks...

I had my 4th R-CHOP treatment a few weeks ago, with a reduced dose of vincristine as am having some numbness in fingertips and bottom of feet, and more recently the left side of my chin and lower lip.  I figured it had to be a branch of the trigeminal nerve, a cranial nerve that was causing the numbness on my face. Dr Porter was not so sure, he checked my other cranial nerves and they were OK and because I had a sore inside my lip where I accidently bit it, he thought it could instead be viral, ie recurrent herpes. But I am on a prophylactic antiviral so that should not happen and I had no real "cold sore" looking lesions on my lip. So once again I seem to get the unusual results, see this excerpt from a medical article on vincristine-induced peripheral neuropathy:
Cranial neuropathy (including extraocular muscles, laryngeal neuropathy, and optic neuropathy) has been reported but is considered rare (Toker et al 2004).
Just like with getting febrile neutropenia despite Neulasta (see older post) only 1% of the time is that seen, based on clinical trial results. Dr.Porter was worried enough about these symptoms that he ordered a brain MRI to rule out lymphomatous meningitis. He doubted that but wanted to be sure and told me not to worry. Ordinarily I would run to my medical texts and online resources and look that up, but I decided this time why make myself crazy, why not wait until you hear the MRI results, which thankfully were negative...

My counts are good post-treatment except for the inevitable neutropenia even with Neulasta shot; at least this go-around I did not have a fever and have to be admitted for IV antibiotics. The node under my left jaw continues to remain small, so the lymphoma/transformation seems to be under control.  I love the patient portal they have at Penn Medicine, you can email your provider, check on appointment times and get your lab results, and it can graph the results over time. Below is a graph of my LDH (which is elevated in Richter's syndrome), showing how  it comes down nicely after treatment but after the last treatment it did go up to 300, normal range at Penn being 98-192. The general trend is down, though, and my highest value was in early March when it was 408.

I posted the following photo on Facebook this week to show how many pills I have to take, not unusual for someone with a chronic disease I guess. I need a lot of supportive medication, mostly for infection prevention.....here are my morning and evening weekly day-by-day pill boxes....I joke that what with the expensive monoclonal antibodies, I am singlehandedly supporting pharma. Some of these are generics thankfully but voriconazole is close to $1000 a month (but "only" $50 copay). I am so grateful to be able to continue to work and to have good health insurance...

Posted by Friendly Curmudgeon at 9:52 AM 5 comments:
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Thursday, May 9, 2013

A re-posting from another doctor closer to death than I

I found this of interest....possibly the last post from the cheerful oncologist

THE CHEERFUL ONCOLOGIST

“This Is My Last Day on Earth”

By Craig R. Hildreth, MD |May 2, 2013
Dr. Hildreth is a medical oncologist in private practice.

The past two and a half years have been such a bonfire of emotions for me. At the beginning, I never realized I would have to cope with such shifting and volatile contradictions: terror and courage, rage and tranquility, despair and hope. Thirty months ago, I was diagnosed with cancer. For 30 months, I have been living with cancer, but today I am dying of it. It has been an exhausting journey and now like a fire’s last embers, my spirit also dims. Before the day and I both go dark, however, I need closure on some things that have been on my mind. May I share them with you?
 
To my primary care physician: I know that it wouldn’t have made any difference in my case, but when patients come to you with complaints, and you attribute them to bronchitis or a muscle strain or some other common problem, make sure you follow up to see that they have recovered. Remember that cancer can be a great deceiver of doctors. Don’t assume that folks as healthy as me could never be stricken.
 
To my oncologist: You certainly were pleasant and compassionate. You also tended to minimize the gravity of the situation when my disease progressed. I know you’re not psychic, but when things are going badly, don’t be afraid to tell me you’re worried. You once said, “No one can tell you how long you have left to live,” but I know you could have ventured a fairly accurate guess. You chose to keep it to yourself, I guess to spare me the sorrow, but how do I prepare my family for my death if I’m not kept informed? Also, please don’t feel you have to keep offering treatment after treatment. It’s okay to say, “Enough."

To my insurance company: Your medical reviewer told my doctor that you are not in the business of practicing medicine, but then you denied payment for my Avastin, stating it was given two days before your regulations allow. You don’t know how much this upset my father. It is this type of nitpicking and rigidity that builds your reputation as a champion of mediocrity. I will remember you as a paltry and apathetic advocate of cancer care.

To all the nurses who took care of me: In the office, you were efficient and cheerful—you calmed me down, gave me a boost, and almost made me forget why I was there. In the hospital, I could tell you were stressed, but you never failed to attend to me—and you were sweet about doing tasks that I sure as heck could never do. As for my hospice nurses—you were a true blessing to me and my family, for which we will always be grateful.

To my loved ones: I am so sorry you had to go through this. Although I haven’t mentioned it, I am heartsick with the realization that once I’m gone my misery ends, but like the ancient myths, your grief lives forever.

Finally, to myself: You were not as strong as you professed to be, or as understanding. You lost track of your values, exasperated your family, and turned your back on some old friends, all just to spite yourself. You made the mistake of surrendering to the great seducer of the doomed—nothingness. In this void, no love could reach you, and you suffered all the more because of it. May you now find eternal peace.
Posted by Friendly Curmudgeon at 4:53 PM No comments:
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Monday, April 29, 2013

Just out of hospital for febrile neutropenia, again

So, I was admitted once again to HUP on Tuesday with a fever to 102.6 and zero (as in none, nil, nada) neutrophils. This was despite getting Neulasta after my #3 dose of CHOP-R. I was surprised since this did not happen after #2 but in the pivotal trial 18% on placebo and 1% on Neulasta had febrile neutropenia (there' s some classic van Saun luck for ya!)
But all went well counts started rising with ANC of 880 on discharge, afebrile and taking today off work to hang out with cousin visiting from Kansas, Pics are from my IV-untethered visit to a delightful patio off the first floor of the Rhoads Pavilion, along Hamilton Walk, and right across the med school library where I last studied in...1974! also my hospital room and me being cheerful! For once ...









Posted by Friendly Curmudgeon at 7:42 AM 1 comment:
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Monday, April 22, 2013

This broken great tree and me..

This picture of our tulip poplar, ravaged by winds and rot over the years, but still alive and sprouting new leaves this spring. I definitely identify, we are both hanging on to LIFE!

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Friday, April 19, 2013

R-CHOP #3, so far so good

Updating my condition, I got R-CHOP #3 several days ago as Dr Porter was pleased that the lymph node in my neck on the left decreased in size and that my blood counts continue to improve. With a hemoglobin of 11.2 I finally am getting back to normal; it was last at that level in October 2011!  Same with my platelet count up to 190K, it has not been that high probably in 5 years!

Yesterday I got my Neulasta shot, and in corticosteroid induced euphoria I decided to wear my John Lester Red Sox since he was scheduled to pitch last night (he won by the way to go 3-0 and the Sox are leading the AL East as we go into the last week and a half of April)
On the elevator a man my wife thought was a doctor (perhaps by his arrogance) questioned why I was wearing Red Sox jersey, after all this is Philly the home of true sports fanatics.  I explained that Lester was an inspiration to me as a survivor of T cell leukemia, about which said doctor was surprised. See me in my jersey below


Posted by Friendly Curmudgeon at 8:10 AM 1 comment:
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Sunday, April 7, 2013

Some signs of hope...

So I got my second R-CHOP a week and a half ago, avoided febrile neutropenia so far thanks to Neulasta, and minimal side effects - maybe a little numbing in the feet from vincristine peripheral neuropathy, lower red cells and platelets but not enough to need a transfusion, so far. The only place I could lose hair is with goatee and that is going nowhere (see my mug shot below).

But the really good news is that my quite enlarged lymph nodes are decreased in size, so with a potential 4 more cycles of CHOP-R maybe this presumed transformation can be beaten back.

To sum up the good news, and stealing from Mark Twain, the rumors of my imminent demise (started by knowing too damn much) have been greatly exaggerated....I just freaked out when I saw the Richter's survival curves, but maybe I have the better prognosis large cell lymphoma, the de novo type that is not derived from CLL cells, only time will tell but I feel that I am on a good path!

Posted by Friendly Curmudgeon at 5:28 PM 1 comment:
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Saturday, March 16, 2013

Why do doctors ignore guidelines

A study presented at the Society of Gynecologic Oncology found that only 37%  of patients with ovarian cancer treated in California from 1999 to 2006 were treated according to guidelines promulgated by the National Comprehensive Cancer Network, a group of 21 academic cancer treatment centers. Showing that the guidelines reflect optimal care, in this study 35% of those who were treated according to the guidelines survived at least 5 years compared to 25% who were not so treated.

There have been other studies showing that doctors do not always follow expert guidelines. In one, a RAND Corporation study found that for a wide variety of medical conditions, only 45% received care consistent with guidelines.

Why do doctors fail to follow guidelines?  As a former practicing pediatrician I believe I can speak to this issue.  Doctors can be stuck in a rut, doing what they always do.  They may not be reading or going to professional meetings to keep up with the latest studies and guidelines. 

The academically based doctors that are real experts in their field may not agree with all the approaches for all of their patients. Since not all guideline recommendations are based on clinical trials but on expert opinion, this is bound to happen .Unfortunately many doctors consider their own experience expertise enough to challenge the guidelines and continue their management the way they have always done it, even if there is good evidence that there are better approaches.

Guidelines regarding management of ear infections in children were promoted in 2004 by the American Academy of Pediatrics that included an option of watchful waiting over immediate antibiotics, a new approach that had I been still in pediatric practice would have been interesting to see how well I myself would have complied to the new recommendations. With parents used to getting antibiotics for their kids' ear infections the observation option with pain control only would be sure to be a hard sell. The guidelines also recommended which antibiotics should be used. A survey of pediatricians in 2006 found that for four common clinical scenarios, based on severity of symptoms and prior antibiotic choice, from 13% to 57% of the respondents agreed with the guidelines.Why such a difference? All these "experts" rejecting the recommendations of the real experts!  One of the treatments was 3 days of an expensive antibiotic shot, sure to be a problem for parents and doctors both. There also was a possibility that the bacteria  that cause ear infections were changing and based on that the antibiotic choices would change.  The authors of the survey also speculate that parental preferences and pharmaceutical company advertising and provision of free antibiotic samples may influence antibiotic choice. 

In a news story on this ovarian cancer study on Boston.com it was noted that another reason patients do not get optimal care is that it only can be given at academic medical centers. Not all patients can afford to travel those distances or have health insurance to cover out of area or network care.  

It is particularly ironic that the news about this ovarian cancer study came out this week as I developed fever and neutropenia due to  CHOP-R and had to be admitted to hospital for IV antibiotics after multiple cultures.  Since I have had febrile neutropenia at least 3 times in the past, after fludarabine, I was not surprised.  Perhaps I should have been surprised that I was not given a granulocyte-colony stimulating factor (G-CSF) like Neulasta or Neupogen after that first day of  chemo. I did get Neulasta after bendamustine treatments in the past.  Having my laptop with me in hospital I looked up the American Society of Clinical Oncology guidelines for using G-CSFs.  This document, published in 2006, recommends using a G-CSF when the risk for febrile neutropenia is over 20%.  The study of  CHOP-R in lymphoma patients found a febrile neutropenia rate of only 18% so my oncology team was not amiss in forgoing using Neulasta on the first cycle. But wait the guidelines also say this:
Certain clinical factors predispose to increased complications from prolonged neutropenia, including: patient age greater than 65 years; poor performance status; previous episodes of FN; extensive prior treatment including large radiation ports; administration of combined chemoradiotherapy; cytopenias due to bone marrow involvement by tumor; poor nutritional status; the presence of open wounds or active infections; more advanced cancer, as well as other serious comorbidities. In such situations, primary prophylaxis with CSF is often appropriate even with regimens with FN rates less than 20%. This was the consensus opinion of the expert committee. Such high-risk patients are most often excluded from clinical trials, and this is not a situation likely to have additional clinical data.
So maybe my past history should have led the team to use Neulasta as I have had febrile neutropenia before but maybe that was not in my record at Penn.Maybe the poor status of my marrow with the prolonged anemia and low platelets, but that was actually improving at the time. So  I am confident my oncology team had the right judgement, but ask myself whether I should have reminded them of my history. If I had received the very expensive Neulasta - $2000-6000 for a single dose(depending on what your oncologist can charge your insurance)  - it would have prevented a much more expensive hospitalization. Oh well, water under the bridge.

Posted by Friendly Curmudgeon at 11:23 AM No comments:
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Sunday, March 10, 2013

How I plan to cope with my new prognosis...

See this entry in my less-used blog, the Friendly Curmudgeon, my random thoughts on my spirtiual path, primarily Quaker (Religious Society of Friends).
Posted by Friendly Curmudgeon at 4:15 PM No comments:
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Saturday, March 9, 2013

Richter's syndrome (My luck may just be running out)

I say this because my oncology team acknowledged that I do probably have Richter's transformation, based on the clinical presentation of a rapidly growing local node area while the leukemia seems to be under control elsewhere (other nodes OK, marrow improving) and increased blood levels of LDH (I finally stopped denying this possibility and actually inquired as to my blood levels of said biomarker).

For friends and family who don't want to wade through a lot of the technical stuff I posted below, see this excellent summary for layfolk of the condition by a CLL expert, Dr Sharman. This summary does not however tell the story like the following dismal graphic (click to enlarge fo easier viewing) from a large series of Richter's patients:



(note very little differences between whole group and those treated in fall off of survival)

What follows in this post is more science for those interested; I do it to keep my head straight. But I may not have much time left on this planet now and need to get right spiritually and emotionally. I plan a future post on this as have given this much thought of late....

Most all of the transformations in Richter's are to diffuse large B-cell lymphoma (DLBCL). Rarely there can be Hodgkin's lymphoma, accelerated CLL or prolymphocytic transformation.  For me there is no evidence for the latter 2 conditions, and I guess biopsy is the only way to rule out the odd Hodgkin's, probably also the response to chemo selected.

Looking over recent reviews on this condition, my future is definitely uncertain, the survival rate is not good for most of those who develop Richter's, the 80% of that come from what is called clonal evolution of one's CLL cells, by repeated mutation, a very bad one being a mutated p53, which is a tumor suppressor (read more here, warning quite technical) when it is normal, otherwise, with many types of mutations, the tumors go wild...



In the other 20% the DLBCL develops de novo as a secondary cancer. See an image which explains the different types (ignore the verbiage re mutated IgG status, too technical for this discussion, but if you are game this image is from this article)

The difference in prognosis between these two types of transformation is significant. In one recent article the median survival for those with de novo lymphoma was reported to be 62.5 months vs 14.2 months in those with clonal transformation. Unfortunately there is no commonly used clinically available test to differentiate the two types.

So what about treatment, then? Standard of care seems to be CHOP=R which if reasonably successful can be followed by stem cell transplant. Here is a summary from a state of the art article on CLL:

Management of Richter’s  syndrome  therefore  remains  unsatisfactory with overall response rates of around 34% using CHOP or platinum containing chemotherapy, and 47% using rituximab-containing regimen. The mean overall survival is around 8 months from end of treatment
Here are more survival curves from a large MD Anderson series:

Using a score derived from patient and tumor characteristics, from what I can tell I score a 3, see this dismal curve:

A little  better prognosis in Richter's was reported at ASH 2011 by a European group, with 15 patients treated with CHOP-R in a Phase 2 truak, there was a 67% overall response rate, a 15 month median progression-free survival and a 27 month  median overall survival


and this one looks better for those who respond to chemo and get transplant, albeit just 7 patients:


So time will tell, issues to be discussed with my onco team in the coming weeks include the following: do I need a biopsy to definitely prove diagnosis, how many cycles of CHOP-R, should we continue to pursue the viability of transplant with the two possible unrelated donors that were found on the registry match t.and again what about my trying CAR-T if the cells can be found to express CD19 and they can grow sufficient T cells?



Some links to pdfs of key Richter's articles, including a recent review and an earlier publication of  the MD Anderson experience:

Jain, O'Brien, 2012. Richter's Transformation in Chronic Lymphocytic Leukemia [most current review]


Tsimberidou, et al 2006.  Clinical Outcomes and Prognostic Factors in Patients
With Richter’s Syndrome Treated With Chemotherapy or Chemoimmunotherapy With or Without Stem-Cell Transplantation [MD Anderson experience]


Rossi et al , 2011. The genetics of Richter syndrome reveals disease heterogeneity and predicts survival after transformation [all about p53 and survival differences]

Probably more to come when I find them....need to do this medical-intellectual exercise as I put off really thinking about my demise....
Posted by Friendly Curmudgeon at 3:58 PM 4 comments:
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Friday, March 1, 2013

The wild ride continues

As you can see below, the group of nodes on the left side of my neck (on the right by the photo taken with iPhone), there has been rapid growth, with some pain, and my oncology team is now planning on major chemotherapy for this.



There has yet to be any labeling of this a transformation, and maybe that would necessitate a biopsy, but I am to start a course of CHOP-R, which is commonly used in several types of non-Hodgkins lymphoma (NHL) as well as in Richter's transformation of CLL (to diffuse large B cell lymphoma usually). CHOP is

  • Cyclophosphamide, an alkylating agent which damages DNA by binding to it and causing cross-links
  • Hydroxydaunorubicin (also called doxorubicin or Adriamycin), an intercalating agent which damages DNA by inserting itself between DNA bases
  • Oncovin (vincristine), which prevents cells from duplicating by binding to the protein tubulin
  • Prednisone or prednisolone, which are corticosteroids. 
R is for rituximab.Here is a further discussion of the CHOP-R regimen, which includes side effects. And here highlighted in yellow are the results of a phase II German study of R-CHOP showing for those fludarabine-resistant (that would be me) about a 50% response and a 27 month median survival.



My morning bus driver had NHL - now probably "cured" as he is more than 5 years out. Today he noted that he lost all his hair including beard and eyebrows with the same regimen. So in discussion with my wife Cynthia I am going to the barber and going back to my bald look (which I daily maintained by shaving before low platelets made me stop) as well as shave the beard patiently grew on the sides, but keep my goatee until the drugs take it away Here are some photos of my curly locks, soon to be gone:




Look for my projected picture (from a year or more ago) of the return of the shaved old man below, hopefully celebrating success with this next therapeutic adventure . But I am nervous about this therapy yet it seems like the best approach for now....and then on to a clinical trial, perhaps with one or more of the new TKIs (see prior post) or the CART pilot if can clear this node. The one assumed inaccuracy in the pic below is I maintained my goatee....only time will tell....






Posted by Friendly Curmudgeon at 7:43 PM No comments:
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Sunday, February 24, 2013

All these tyrosine kinase inhibitors...

....could there be one for me?

Oral drugs that inhibit the tyrosine kinase enzymes that are part of signalling molecules in various cancer cells (as well as normal cells in some cases) are the current rage in oncology drug development. In chronic myelogenous leukemia (CML) treatment has been revolutionized with this approach to inhibiting an abnormal signalling protein that occurs in this type of leukemia. First, the tyrosine kinase inhibitor (TKI) imatinib (Gleevec) was approved in 2001 and then at least 4 more approved in following years, the most recent being ponatinib approved in December 2012.


In CLL there are signalling pathways within the B cell that also have tyrosine kinase proteins for which there have been oral drugs developed. Two are in phase III trials, ibrutinib and idelasib, both of  inhibit signalling proteins in B cell receptor network. The B cell receptor or BCR is an antibody like molecule that when stimulated leads to B cell multiplication, OK for normal B cells, bad when leukemia cells do so. Here is  a very complex diagram of the BCR pathway:


ibrutinib inhibits the BTK protein and idelasib the P13K (see black boxes in diagram above).  

See a video of interview by Dr Brian Koffman, a fellow MD and CLL survivor, of Dr Thomas Kipps about drugs that effect BCR in development for CLL.

Not as far in development is GS-9973 which inhibits the protein SYK (also boxed in above).  There is an intriguing phase II trial that will evaluate the combination of idelasib and GS-9973 that is not yet recruiting patients. The idea of using two inhibitors is clearly aiming for a synergistic effect or perhaps bypassing any mutations in the proteins that would develop during therapy and lead to proteins resistant to one of the drugs.


Another signalling protein network involves apoptosis, or cell death.  The family of proteins to which Bcl-2 belongs inhibit the sequence of signals that lead to apoptosis. See the diagram below, the boxed areas are where Bcl-2 is thought to work on mitochondria, inhibiting the signal that leads to cell death.:



By inhibiting Bcl-2, apoptosis of leukemic cells could proceed. The drug furthest in development is ABT-199 which has had a temporary setback with a suspension of recruitment for early phase trials due to several deaths from tumor lysis syndrome. The company developing the drug, Abbvie, has stated 
"Previous and current trials have shown that dose escalation methods can control tumor lysis syndrome and we have every expectation that the trials will come off of clinical hold and that we will be able to initiate Phase 3 trials in 2013, as planned."

 See the video interview of Dr Kipps on Bcl-2 in CLL. 


So how might one of these drugs help me? Well I am clearly not in remission, the rituximab-high dose methylprednisone only shrinking my quite large left cervical node temporarily. Although I don't have peripheral lymphocytosis and my marrow is recovering with reg(ard to platelets and RBC (see prior posts on this blog), see the ginormous node which continues to increase now only about 9 days after finishing the last cycle of HDMP:


Since my other palpable nodes are not as rapidly growing, I of course worry about Richter's transformation, but I always worry about that. Am getting a CT scan in several weeks to see how nodes are doing internally but if I don't have Richter's  I clearly need more treatment. I am quite interested in the phase II trial of the agents in combination noted above. I plan to email the investigator to inquire as to where the trial is being done, hopefully one will be reasonably close to home. I think since my other option, the CAR T cell study has not been formally offered to me, I have to keep my options open......


Posted by Friendly Curmudgeon at 7:09 PM 1 comment:
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Thursday, February 21, 2013

My marrow continues to recover!

Great news, Wayne-followers! I saw Dr Porter this week and again my blood counts are improving, with a hemoglobin over 10 for the first time since over a year ago (Halloween 2011) and platelets are stable at 87K. Total white count 2.7 low but at least neither neutropenia nor high lymphocyte counts.

The large lymph node on the left side of my neck did not decrease in size as dramatically as with the last HDMP-Rituxan cycle, but Porter is encouraged that my marrow seems to be coming back even though I still have bulky lymphadenopathy. The balance for future treatment now swings back to the CAR Tcell project, over the transplant option. It would depend on further tests - CT scan and repeat marrow - and if they can harvest adequate T cells from me.

So no transfusions or treatment for now, to get CT scans to check nodes burden internally in a few weeks, and then we'll see...
Posted by Friendly Curmudgeon at 8:38 PM No comments:
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Sunday, February 10, 2013

A paradoxical turn of events

So some good news and some bad!

First the good news: my platelet count has started coming up! Nine days ago it was 20K and last week it rose to 70K. This could be a sign my marrow is recovering. The hemoglobin was 9.2 and then 8.9 so did not need red cell transfusion for almost 2 weeks. This is all good because whether my poor levels of normal cells are due to marrow toxicity of prior treatments or the leukemia or both, if my marrow is recovering I may yet be considered for the chimeric antigen receptor (CART) trial!

But the bad news is that a month after the dramatic shrinking of my nodes with high dose corticosteroids and Rituxan, the more dramatically enlarged node is back in my neck, as large as ever. So I am scheduled for another round of steroids and Rituxan starting tomorrow. If I need this treatment every month to stay my nodes, one wonders how long it could go on, given the side effects of steroids (glucose intolerance, osteoporosis,etc). It would make moving on to another therapy perhaps more definitive sooner rather than later, such a transplant or CART...

The other implication is that if nodes worse yet marrow better, than perhaps IT IS recovery from marrow toxicity! Only time will tell.

Here are some pix, the node is back (first) and then me trying to keep a happy face on my life (second) - see no reason not to, have to enjoy each day and although it is 20 degrees outside, Spring is around the corner, and to be frank., life is good!




Posted by Friendly Curmudgeon at 8:13 AM No comments:
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Saturday, January 26, 2013

Update: some progress?

I saw Dr Porter yesterday. He was pleased that my nodes are remarkably smaller. If my marrow could start to produce normal cells I would still be eligible for the CAR trial.  They are looking more deeply into whether I really match the two unrelated donors they found on the initial search. Dr. Porter wants to do another cycle of the high dose methlyprednisolone which was scheduled for week after next. He said that if my response does not include the marrow recovering, they wouldn't want to wait too long before doing the transplant. I thinks this means of course they would clear the marrow as much as possible with the pre-transplant conditioning. 

Who knows, I could have a transplant by the spring, yikes! Dr.  Porter did note that I seemed to be requiring transfusions a little less often with platelet counts that stayed above 20K for up to 4-5 days after the last transfusion.
Posted by Friendly Curmudgeon at 2:29 PM No comments:
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Sunday, January 13, 2013

HDMP impressive result so far!

Here I am on a quiet Sunday afternoon watching Atlanta tear up the Seahawks in NFL playoffs, and am getting bored so thought I would summarize the past week during which I received Rituxan the first day and high dose methylprednisolone (steroid) daily for 5 days, as per planned protocol. I tolerated the steroid pretty well, some insomnia, big appetite, felt like in a fog much of the time, was hard to work some days.
Also on prophylactic antibiotics no other issues. Did need RBC and platelet transfusions on Thursday and Friday.

So look at the dramatic change in lymph node size, over just this week!

Before:

Today:

Amazing huh, now to get weekly Rituxan X 3 more and then next phase....


Posted by Friendly Curmudgeon at 2:33 PM 1 comment:
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Wednesday, January 9, 2013

Odds and ends - HDMP-Rituxan going well, still fighting wrong priorities in my head

So I  got both the high dose methylprednisolone and rituximab on Monday and to get HDMP daily the rest of week. No real new side effects except steroid munchies, euphoria mixed with some irritability, and insomnia (staying up later and waking earlier but getting 6 hours solid sleep with the help of Benadryl the first night and then lorazepam last night). I know it may be wishful thinking but the nodes in axilla seem smaller and the huge one in left neck seems less tense...dare I hope?

For those who are inclined to read deeply in the med literature, here is link to a study on the above protocol,
RITUXIMAB IN COMBINATION WITH HIGH DOSE METHYLPREDNISOLONE FOR THE TREATMENT OF CHRONIC LYMPHOCYTIC LEUKEMIA(Topline: study found 96% overall response rate, 33 months median progression free survival and is particularly good for those with myelosuppression, that would be me!)

With the euphoria I had two episodes the last two days of rampant self-indulgence. On Monday I was on train playing with laptop and remembered to look up Princeton hockey game we had been talking about going to, was to be this coming Saturday. Upon reminding Cynthia, she reminded me of my commitment to see dying friend and/or her going to see nephew post-op, Damn I lost my "others " focus so soon. After Alabama trounced Notre Dame for national championship I thought to spend upwards of $30 on a champ ball hat, but with my usual self-indulgence in control I almost hit purchase submit button, but then I remembered the need to fight for gun control here in our insane society so that money would be better spent as contribution.to one of the groups ramping up thats fight....

But on another note one of my co-workers has launched a pay it forward project within our company to sign up folks for the bone marrow donors registry. She has asked me to the poster boy ("old man" seems better) and had me write the introductory blurb to the mailings See below, what do y'all think?

I have had chronic lymphocytic leukemia (most common adult leukemia) since 1997, and have been treated with both chemotherapy and monoclonal antibodies 5 separate times as my disease went in and out of remission. All these potent drugs that kill leukemia cells have put me back in remission for sometimes years, sometimes months, but have also wreaked havoc on my normal bone marrow’s ability to make healthy red and white blood cells and platelets. I have needed transfusions of both platelets and red blood cells on almost a weekly basis for over a year. I am currently on my 6th treatment protocol; it is too early to know how it is working. There are few options left except for drugs in development in clinical trials so my doctor and I are beginning to think it is time to consider a bone marrow or stem cell transplant. As I have no available related donors, I will need to turn to the donor registry to find a well matched donor to have a chance at a cure, or at least to have a chance to enjoy at least a few more years of life...
Change the type of leukemia or blood disorder and the details in the above and you could be hearing from one of thousands of others who may need transplants for disease cure or control, we all need your help!
Posted by Friendly Curmudgeon at 7:47 AM No comments:
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Thursday, January 3, 2013

Do not ask for whom the bell tolls, does it toll for thee...

...or perhaps a friend or family member who is actually worse off or closer to death or disability than you.

In just over the last several days, I learned of medical conditions of a very close friend from my teen years and a teenager on my wife's side of family, both horrendous.

The teen has a genetic condition whereby he gets tumors in his spine near the brain, with the potential for paralysis and worse. His most recent scans showed multiple tumors and he is headed to surgery next week, with some risk of post-op paralysis. Here I had to choke back the tears when I heard, this kid is not yet 16 and has his whole life's potential jeopardized with this condition....and I in my self-centered fears have had a pretty good life to 63, and there is no comparing the horrors.

And my best friend when growing up from mid-teen until I moved to New Jersey in late high school. We lived 3 doors apart, had birthdays the same week, loved sports, went to many a Washington Senators and Redskins game, played Little League together, had Wash Post paper routes at the same time, and so forth. Had reconnected the last few years thanks to our common sports interest and the Internet. He was recently diagnosed with pancreatic cancer stage 4 and has only a bit of time left, with hospice involved....

Again, when such suffering of others comes into my sphere of conciousness, I feel so helpless and get angry at my self-centered fears about my own condition...Need to remember that there is soooo much suffering on this planet, and that my Quaker/Buddhist compassion should be there for others more than myself....

That said, prayers for all of us are heartily welcomed.....


Posted by Friendly Curmudgeon at 8:08 PM No comments:
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Blog Archive

  • ▼  2013 (20)
    • ▼  October (1)
      • jeu terminé (Game over...)
    • ►  August (2)
      • The adventure continues
      • Left cervical node huge, again
    • ►  May (2)
      • Possible progress, peripheral neuropathy, pills, a...
      • A re-posting from another doctor closer to death t...
    • ►  April (4)
      • Just out of hospital for febrile neutropenia, again
      • This broken great tree and me..
      • R-CHOP #3, so far so good
      • Some signs of hope...
    • ►  March (4)
      • Why do doctors ignore guidelines
      • How I plan to cope with my new prognosis...
      • Richter's syndrome (My luck may just be running out)
      • The wild ride continues
    • ►  February (3)
      • All these tyrosine kinase inhibitors...
      • My marrow continues to recover!
      • A paradoxical turn of events
    • ►  January (4)
      • Update: some progress?
      • HDMP impressive result so far!
      • Odds and ends - HDMP-Rituxan going well, still fig...
      • Do not ask for whom the bell tolls, does it toll f...
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