This update takes off from my earlier 11/4/16 walk away from a chance for another attempt at cardiac catheter oblation. Wasn’t convinced oblation procedure was worth risk… a 5% chance of complications, which I interpreted to mean “death.” Not that I’m afraid of death, just not quite yet ready to say hello to grim reaper. More like, would you wait a minute? Maybe a long minute?
To provide more context, tell you what’s it like to receive on going treatment as a leukemia patient.
At Cancer Center blood tests 4 times a year for complete blood count (CBC), weight (152 at 6+ feet), lymph node check, blood pressure, questions about overall health. Additionally, monthly B 12 shots to boost energy level.
These 1/4 year appointments always make me nervous, never know outcome of CBC, and I’ve learned how I’ve been feeling seems independent of test results.
Returning to infusion center produces a funky, pit of stomach feeling, hence blood pressure (BP) and pulse are usually high. I hate these visits.
On last visit BP systolic reading was 170. RN takes it again, now 190. Tried a 3rd reading from wrist ….169. She gives up, I mention my nerves. RN…”Still too high. I’ll put it in your chart.”
RN…(holding a syringe) “Which arm do you want me to use?”
PV…”Left. You’re not going to hurt me are you?”
RN (Not sure if I was kidding.) “I’ll try not to. Make a fist, a little pinch” and inserts needle. Arms are thin; my veins usually stand out. She draws 3 vials of blood.
RN leads me to Dr Koslov’s exam room. After brief wait PA Ashley enters, blond and attractive.
“Have we met before? I now have a little girl.”
PV…”I don’t think so. Doesn’t Dr Koslov’s other assistant also have a little girl?”
Ashley…”Yes. Our girls are almost same age”
“Up on table, please.” (Listens to my heart) “Breath in and hold. There goes your A-fib. Unclasp your belt and unzip paints.” (Avoiding raised eye brows if she were to do it).
Carefully puts on rubber gloves, and sticks her hands in my pants so she can check groin area for swollen lymph nodes.
“Some are prominent but not pathological (an ambiguous and disconcerting statement).”
While she had her hands in my paints, I ask her a direct question…”Is drug shortage affecting your practice?”
I obviously dropped a bomb shell. She stopped feeling around my groin area and quizzically looked at me (I was thinking…”Don’t stop, don’t stop.”)
Ashley…”Are you a reporter?”
Her attitude toward me did a 180. She clammed up, I had struck a sensitive nerve, and suddenly she wasn’t sure who I was. Would guess she thought I was an investigative journalist.
A friend mentioned…”Next time avoid such a direct question when she has her hands in your pants.”
In silence she ducked her head, finished what she was doing and turned to office laptop to record her observations. She stood, as she walked out, “Dr Koslov will be in shortly.” Awkward moment.
Dr Koslov enters, as usual all business, and as you may recall on whom I have a crush. She looks at computer monitor which displays blood test results. “You’re good. In fact I would say excellent, in remission and holding.” Shows me graph of white cells over time. Amazing graph. She leaves room to make me a copy.
When Dr returns I ask her same question,…”Is drug shortage affecting your practice?” (Talk about a different response). She sits down and starts talking. She must know I have an “honest” crush on her. She felt comfortable to express frank opinions.
“Oh yes. We are having trouble getting enough iron infusion drug for my anemic patients. Also, leukemia treatment for my young patients is problematic.”
(Confirmed from another source that some leukemia drugs are in short supply.. Tough here, unable to acquire sufficient “state of art” chemo drugs, some hematologists are resorting to “old” chemo treatment, and some kids aren’t doing as well. To complicate further the situation parents are not being told their kids are receiving substandard care. To level with parents might give rise to law suits, and frustrated parents.)
Because of drug shortage major hospital centers are stock piling drugs, exacerbating drug shortages for smaller scale providers.
On a similar vein, Wall Street Journal reports Robin Miller, a 62-year-old oncologist in Atlanta with bladder cancer, was scheduled to receive a potentially lifesaving drug in December 2015, but her doctor’s office called shortly before the appointment to say: “Sorry, we don’t have any. We can’t give it to you.”
“What’s the problem?”
“Pharmaceuticals are making gobs of $$, and none of them want to make cheap drugs, or make up for drug deficits for drugs they’ve already milked for profits.”
“That’s a tough one. No short term answer. May be necessary for Feds to provide drug production subsidies to at least pump out essential drugs.”
(Back to me). “OK, we are done here. Continue your B 12 shots, as for those, you could take the OTC B 12s you dissolve under tongue, alleviating need for shots.”
“I’ll continue with monthly shots, I don’t want to jinx myself. Not hard to drive down here.”
“As you wish, I’ll write scripts, get printout of schedule as you leave. See you next season. You should have 2 CBCs while in Fairfield. We do need to keep track. We don’t know how long remission will last. You are doing well. Have a good summer.”
(She is gone, along with air in room.) I catch my breath then exit carrying miracle remission graph. Return to valet parking (free service for Cancer Center). Leave a $5 tip. Home to share good news with JV. Will pop bubbly tonight.
Reviewing my recent leukemia related events:
• Rapid upward spiral of lymphocytes, reaching a high of 80,000 per deciliter (normal is 4 to 6,000, signaling my watch and wait period was over (like waiting for Godoh)…otherwise:
“Hello grim reaper, it’s time we got together, 1st, can I make one phone call?”
• A call is made to my trusted hematologist, Dr. Koslov of Naples Cancer Center, NCH, (on whom you may recall I have an absolute crush, she is trying to save my life among other reasons). She schedules me for infusion, Nov, 2011, 2 infusion drugs…Treanda and Rituxan…a combo not available until after 2008, 6 years after my leukemia diagnosis (CLL).
By end of January, 2012, I was finished with infusion therapy, my blood work showed remarkable turn around from close to death to “he may survive after all.” Had a lot more stuff along with these 2 drugs, but those are minor details.
• Have you seen a graph of remission? Have you seen what happens when cancer (leukemia) drugs are exactly on target? Have you seen power of appropriate and efficacious cancer therapy. This graph depicts in dramatic fashion how I went from “big, big” problem to “small, maybe no” problem in matter of hours.
This graph is not kidding, shows my new lease on life, until, or even if lymphocytes make another curtain call, then it’s back to drawing board, and another call to Dr Koslov. No doubt she’ll be heads up from my CBC’s 4 times a year. She keeps after me, why I’m glad she’s in my corner. By then, cancer field may have new and better leukemia dugs for dealing with “recurrent” leukemia. By then, let’s hope drug shortage has eased somewhat.
Even though I was in leukemia remission, couldn’t enjoy respite during 2013 and 2014. As infusion RN told me, “It takes a while to recover from stage IV leukemia.” Plus, I fell into deep depression over JV’s Parkinson’s diagnosis.
By 2015, I was feeling much stronger related in part to anesthetic (Propophol) used during a failed cardiac catheter oblation that acted on my depression in a manner similar to my successful leukemia drugs. Propophol helped me feel better immediately.
Could say I’m in double remission…remission from ravages of leukemia…remission from relentless drag, and discouragement of depression.
My new lease on life is still holding. I’m feeling better than I have for years, playing better tennis than I have for years. In short, I’m enjoying life again. Even think I’m liking myself again. You know, learning to like yourself can be a challenge. Hard to make this “like” happen, it just happens. Does make me a little hard to live with, as JV keeps reminding me.
Now I’m focusing on her PD, becoming an advocate for PD diagnosis and cure. PD field is obsessed with symptoms and control, what PDers need is early diagnosis, better and targeted PD drugs and CURE. I refuse to believe a CURE is not possible, even though PD currently is classed as incurable.
Tennis and Fashion Show
A good indication of my return to life, besides having more energy and being more upbeat, I’ve begun to take part in men’s doubles (every Saturday) and mixed doubles (Sunday). Add a weekly clinic from WTC pro Shawn Hedrick and weekly singles, + a pick up game every now and then, I’m talking about nearly a full tennis schedule.
I’m truly enjoying going from no play to nearly full play. I’ve changed my tennis attitude. I feel very relaxed on court, not worried about winning or losing, being able to step out on the court for me is win, win. As a result, I’m playing better tennis than I have for years. Could be 6 months ahead of schedule, I thought my return to tennis form would take a year.
I am participating in club sponsored social activities, such as annual Fashion Show. This was written morning after fashion show, January 2016.
People say a picture is worth a 1,000 words. This picture….3….OMG!
10 years ago or was it last year, I swore I would do fashion over my dead body. But Susan K and Beth H did me in. I dare not tell you what they promised me for doing fashion show.
With no other recourse, I committed suicide at 5:01 PM yesterday, or was it this morning. To make worse of a bad situation, JV donated my brain to science, but science returned it (Helen Mirren).
Just occurred to me that Susan K and Beth H are part of JV’s pool bobbing group. Goes to show…never trust a bobber. (Must say Susan K and Beth H did a bang up job of organizing Fashion Show. They wrestled control from JV of my diet, exercise, and sleep patterns so I would be in peak modeling form. Have to give them that while I bury my compression shorts and spandex boxers.)
This is my last picture. You might consider saving it, or better yet, trashing it. Person who took picture yesterday has not been seen for 10 days.
My challenge this morning. How to play tennis with a paper bag over my head, particularly with these winds. Another challenge…without bag, how do I face my “public” this morning. Let’s pretend fashion show never happened shall we.😉😀
JV and Parkinson’s Disease (PD)
As part of my being a “care giver” to JV, not that she needs care given at this point as she tries to be independent, I’m very active in MyparkingsonsTeam social network.
PD Stats from MyParkinson’sTeam
PD is a progressive disease of nervous system marked by muscle tremors, rigidly, decreased mobility, stopped posture, slow movements, mask-like facial expression.
Stats from members of MyParkinsonsTeam team social network. At end I include some of their comments.
Sample 12,000, update as of 3/26/16
- Data from those who have completed their condition history. Self reported.
- 12,000+ say PD is their primary condition.
- 53% male
- 47% female
- Most respondents rate their PD condition as severe.
- Vast majority 50+ years old. Nearly 90% over 50.
- Age at 1st condition 50+
- 700+ say condition was inherited
- Slowness 47%
- Stiffness spasticity 48%
- Fatigue 49%
- Excessive daytime sleepiness 31%
By far most common PD drug:
Carbadoba Levadopa (Sinemet)
Med Side effects: nausea, dyskinesia (swimming motion, dance like movement)
Next in order
Rest in 200s range.
Deep brain stimulation
Pain. Acetaminophen, ibuprofen
DBS is an answer for some PDers, has been a disaster for others. Almost seems like a crap shoot.
PD is a high calorie condition with tremors, shaking…add loss of smell, taste, nausea…weight loss is a common result. JV has lost 30 lbs.
“Sorry, having trouble typing. I have lost 3 stone over the last year even though I am eating properly.”
Need to be active is critical for PDers.
“You are quite right with the need to keep moving and I enjoyed both the therapeutic side and social side of my yoga class but the movement side has been compounded by a deterioration in my balance which 99% of the time I just dont see coming. I have had some general falls, some spectacular falls – a full flight of stairs – and one where I broke my wrist so if anyone has had similar experiences and has been successful in cutting the risks and finding ways to help stay upright please share. PD always brings along friends to the party lol”
“I came from a large family of tobacco users. I am not a tobacco user. As far back as I can go…back to my Great-Great Grand Parents, they either smoked, dipped snuff, chewed tobacco, were tobacco farmers, or lived with heavy second hand smoke. There is no history of Parkinson’s in my family, except for me.”
“I am 74 years old diagnosed as atypical parkinsonism about 4 years ago. Medications does not seem to help with my symptoms which are mainly freezing and balance problems, I do not have any tremors of my upper or lower limbs. But my balance problems and my freezing are so bad that I rely heavily on my one step walker. I am always in danger of falling when I am walking or when I stand up. I still manage to exercise at least 30 minutes every day on my stationary bike which makes me feel better.”
Epidemiological studies over the past 50 years have shown a lower incidence of Parkinson’s disease among cigarette smokers. Although this apparent neuroprotective benefit of cigarette smoking has been known for a while, be it due to nicotine or the scores of other chemicals in cigarettes, the mechanism has been poorly understood and the therapeutic implications yet to be taken advantage of in the development of new Parkinson’s disease drugs. The main concern was whether this epidemiological finding was just a coincidence, which although unlikely, had not been clinically verified until the recent years. A new research study conducted at Institut du Cerveau et de la Moelle Épinière, Hôpital de la Salpêtrière, in Paris, France has confirmed the potential benefit of nicotine in Parkinson’s disease by its action on a specific type of receptor on neurons.
I sent my PD team on this social network this request/question.
APB to my PD friends. I (PV) want feedback. Have you guys heard of stem cell treatment for PD? I heard about this on late night BBC radio.
(Listen to BBC is what I do when I can’t sleep which is almost every night (leukemia and insomnia are bosom buddies). I’ve heard about and experienced great advancements in cancer treatment. For example, In England and with gene therapy, medical researchers have shrunk to zero solid cancerous tumors.)
I’m one who benefitted from “state of art” leukemia treatment..for me a combo of chemo infusion (hate that stuff…I’m a “chemosapien,” a chemo recipient who walks on 2 legs) and “monoclonal antibodies” infusion in which my blood attacks itself. This cocktail erased from my peripheral blood system most of my offending leukemia cells; I’m now in remission and feeling good.
For JV’s case, I’m in contact with a treatment facility that purportedly provides legitimate stem cell treatment for PD patients. I’m avoiding specific names, location to protect innocent or maybe guilty. This company says they’ve been in business for 20 years, and cites a 93% success rate in PD cases. Treatment is by shallow injection and takes 1 hour and 15 minutes. They say over the 20 years they have treated 300 PD patients, and “all” have experienced major improvement in PD symptoms, and PD progression has been halted. No complications.
Cost for treatment would be $25,000, all out of pocket since treatment is not FDA approved. Treatment would require a weekend trip to San Diego, and a facility van would then take us to treatment center in Mexico right across border. We would be back by Sunday.
The more I talked with the “sales person,” the more I suspected I was dealing with a scammer. He would not give me his last name. He called himself an assistant surgeon, but he had no medical degree. When I asked him for contacts of PD patients…”I can’t give you that. The CEO can, but she isn’t in today.”
“When can I speak with her?”
“How about we call you on Monday at 1:00 PM.”
“OK, I’ll be here.”
Needless to say, call never came. I thought that ended that, but they haven’t given up. Received voice mail a couple of days ago saying they would be willing to negotiate on price.
JV and I plan to speak about this with her neurologist at next appointment. Curious about what he’ll say.
Meeting With Dr. Wey
We did speak with Dr Wey about my contact with stem cell facility based in Mexico.
Let me give a favorable plug for Dr Wey. Before I put JV on plane to San Diego…BTW..I couldn’t “put” JV anywhere W/O her approval; she would beat me up…I wanted to get Dr Wey’s approval or at least his acceptance. We didn’t connect, but he tried to return my call 3 times over weekend, he even left me a text message …”What’s up?”
I mention this because in many emails from MyParkinsonTeam, “My neurologist never returns my phone calls” is a common complaint. Dr Wey is very busy (he looked very tired at JV’s last appointment), and yet he tried to reach us over a weekend when I would guess he was anxious for time away from PD and for R and R.
Back to stem cells and PD. Dr Wey asked why we had tried to reach him late Friday. I described the San Diego/Mexico connection.
He smiled, “It’s a scam. Stem cell applications for PD are not ready yet for prime time. Don’t you think we would have heard something if a break through had occurred in this area? Did you ask your stem cell contact for his research on stem cell treatments for PD? ”
I (PV) have done my own digging in this area. Learned a few things:
- According to my contact, fetus stem cells are used by this Mexico based facility. Fetus stem cells harvested by facility are from aborted fetuses from Eastern Europe. No fetus stem cell applications are approved by FDA, hence no Medicare or private health insurance coverage.
- Moreover, embryonic stem cells are more appropriate for PD than fetus stem cells as has been found by animal studies (rats). Embryonic stem cells can be “better programmed” to find and replace/repair disfunctioning cells.
- Animal studies (rats mostly) need to be accompanied by human subject studies before medical researchers will know pros and cons (complications and duration) of stem cell relevance for human PD treatment. Probably, this was what Dr Way was alluding to when he said…”Stem cell/PD applications are not ready yet for prime time.”
He did leave us with this, “If you have $25,000 to burn and are not concerned the procedure might make you worse, go for it!” (We are NOT going for it.)