James Pettine ... Medical History

Last Updated : Sunday May 9th

This site is intended to document our son, James' medical history, specifically the events leading up to his diagnosis of cancer and extending through his treatment.

Background

Dec 03' - Jan 04'

James, an avid skier, had a twisting fall while skiing between the 8th and 15th of Dec. He complained of a head ache and sore back. Over the next 10 days or so he had two additional falls while skiing, both of which were more traumatic. With his back pain, specifically the lower left area of the back, increasing he was referred to a physical therapist. It was the PT's opinion that this was a "typical" muscle pull and James would be better in short term. During the 2nd PT session he had a "deep muscle" massage. That night James experinced unbearable pain. James stopped the PT. As a result of increasing pain, Xrays were ordered (Dec 30th), they were negative. Looking for relief of the back pain, James started Chiropractic care on Jan 3rd. The Chiropractors diagnosis was the same, a "typical muscle pull" with an "I gaurentee he will be better in a couple of weeks" prognosis. James had some temporary relief from some of the visits, but the chiroprator could not understand why James was not responding better to the treatments. During this same time period James was referred to an orthopedic surgeon at the New England Spine Institute. An MRI was ordered, this too was negative, again the diagnosis was "probably a muscle" problem. Physical Therapy was prescribed and the Chiropratic sessions stopped.

Feb 04'

By this time the pain had "spread" across to both sides of his lower back, and occasionally in his buttock and his thighs. To help relieve James of his back pain he was referred to the Pain Management Team at Fletcher Allen Health Care. Over the next few weeks they performed the following procedures.

Following the RFA the pain "centralized" back to the one silver dollar sized "spot" on his lower left back.

Up to this point James has taken a number of medicines, including an overwhelming amout of NSAIDs. Ibuprophen seemed to work well, but only at large doses (upto 4000mg/day). Aleve (Naproxen) was also tried but at 6 a day it did not provide the relief he needed.

Mar - Apr 04'

In March James started seeing a Osteopath Physician who specialized in back pain. To manage the pain and anxiety James was prescribed, Paxil, Klonipin, Oxycotin and Celebrex. Although this helped, he would still have "spikes" of pain (9 on a scale of 0-10). To help with the spikes he was given injections of Toradol. This drug is basically a NSAID "superdose", which is supposed to last for 6-8hrs, for James it was a miracle drug. James felt absolutely no pain, sometimes for upto 30 hrs following an Injection. As a parent I was uncomfortable with the possible side effects of all of the NSAIDs so I requested a blood test be done to make sure they where not causing Kidney or Liver problems. The blood tests showed a Sedementaion rate of 100. Because of this high Sed rate a CT scan was ordered for his abdomen were a tumor was discovered in James bladder. The tumor was partially blocking the Ureter that drains the left Kidney.

A biopsy was performed on Tuesday, April 27th. On Wed the 28th a nephrostomy tube was placed in his left Kidney to allow it to drain properly. Another issue with his Kidneys is his blood tests show a high Creatinine level, as high a 1.9. Although the Ureter was not competely blocked and the Kidney was draining, the Kidney was a little enlarged, the Uroloigist thought by allowing it to drain the Creatinine level would come down. After the nephrostomy tube the level did drop to 1.5 but then rose to 1.7.

May 04'

On Tuesday May 4th I recieved a call from Dr Sivak that the Pathology diagnosis was Anaplastic large cell lymphoma (ALCL) . Additional Site for Anaplastic large cell lymphoma (ALCL) .

MRI's, X-rays, BoneScans ...

12/30/03 X-rays of back - negative
01/24/04 MRI, spine and lower extremities - negative
02/18/04 Bone Scan - Highlighted an "unusual area in his left hip"
02/20/04 X-ray of Left hip - negative
03/02/04 CT scan of Left hip - negative
04/21/04 CT scan of Abdomen - Positive - Tumor in Bladder
04/23/04 CT scan Head - negative
04/23/04 Ultrasound of Kidneys
04/29/04 Ultrasound of Kidneys - Pain from nephrostomy tube, to make sure no urine leakage
04/30/04 Ultrasound of Testicles (to help rule out Germ Cell cancer)
05/07/04 PET Scan - All areas negative except Bladder
05/11/04 Ultrasound of Kidneys - Reviewed by Dr Guillot - looked good
05/12/04 Echo Cardio-gram - "looked good"
05/12/04 CT scan Chest

History of James Blood Test Results

Unresolved questions

Is the Back pain and Cancer releated or coincidence ?
Is there a connection between the high Sedementaion rate and the cancer .. or is there something else going on ?
Could the high Sed. Rate have anything to do with the Steroid Epidural or Medial Block (ok prior .. high after)
- Possible connection of Sed Rate and Lymphoma
Our biggest Concern
- We obviously want the best diagnosis ,treament and care possible. Will going to a specialized facility such as Dana-Farber guarantee this or does the Fletcher Allen Helath Care facility in Vt. provide an equal level ?
- updateAfter talking with Leslie Lehmann we feel at this time FAHC is the place to be.
There are many issues at hand and would like to sit face to face and talk about the following.
- James blood results, Red and white counts (anemia ?), Creatinine and Sed rate.
  - Whats being done ? Do they need to be addressed ?
- With the different issues at hand, Blood results, Nephrostomy tube, additional tests.
  - Who's in charge of overseeing and managing the entire situation ?

Other possible related info

James took Accutane for 5 months (Dec 02' -> April 03') 40mg once per day.
James has always appeared to have a weak Immune system. This had been discussed a few with James pediatrician. Through out the school year he would become sick multiple times. He would almost always get sick a few days following a school social (a bunch of kids in a warm stuff gym for a few hours). He often had strept throat, It was thought that he might have been an "carrier".

Dana Farber

Pathology slides received and signed by M.CHIAVAROLI at 11:15 Thursday. I called Dr Flemmings office at 11:50 and left a phone message asking for confirmation of receiving the slides and a ball park estimate for diagnosis.
update I received a call from Dr Flemmings secretary asking for tracking number. She said she would track down the slides and have Dr Flemming give me a call.
update After talking with Dr Long (Thursday evening) I was assurred that Dr Sivak and Dr Homans would be on top of getting the 2nd opinion completed.

CT Films of his abdomen, head and ultra sounds of his Kidneys and testicles were taken from the FAHC film library in preperation of sending them to Dr Leslie Lehmann at Dana Farber prior to James' visit.
update Ater talking with Dr Lehmann wewill not be sending the films at this time.

Talked with Dr Lehmann Thursday afternoon (May 6th). She echos Dr Homans thoughts (see May 5th diary entry) She feels that 90% is the pathology diagnosis and that that is fairly straight forward. Although she deals with most of the Lymphoma case at Dana Farber, they only make up 30% of her patients, the other 70% are Bone Marrow. She has a high confidence in Dr. Homans, they have consulted in the past, the treatment is a National Protcol (there is no open protocol for this) and is relatively straight forward . She feels treatment should be done here at FAHC, "we have nothing to offer him here that can't be provided at FAHC". The only reason she thinks we should consider coming to Dana Farber is if

The Dana Farber Pathology report differs.
After the first rounf of treatment it hasn't reacted.
After the second round he's not in remission.

She feels if a Bone Marrow transplant is required it should be done at Dana Farber.
Staging - There are 4 levels of staging, she feels James will be a level 3 or 4 (if Bone Marrow is negative then 3, else a 4). It would be very rare for the Spinal Fluid to be positive.

James Doctors

John Long, M.D. (pediatrician)
John Paul Capolicchio, M.D. (urologist)
Alan Homans, M.D. (oncologist)
Louise E. Sivak, M.D. (oncologist)
Ann Guillot, M.D. (Nephrology - Kidney Specialist)
Janice Gallant, M.D. (radiologist)
Kennith Sartoreli M.D. (Pedatric Surgeon)
Hagen Blaszyk M.D. (Responsible Pathologist)
Leslie Lehmann M.D. (Dana-Farber Pediatric oncology - 2nd opinion/consultation)
Mark Fleming M.D. D PHIL. (Dana-Farber Pathologist for 2nd opinion)
Anant Bhave (Interventional Radiologist, Nephrostomy Tube, Ureter Stint)

Daily Log

May 4th

Converstaion With Dr. Capolicchio 10:30am

Why is James Creatinine levels so high, normal levels can be achived with only one healthy Kidney. Should James see a nephrologist ?
Should James' Creatinine be check again ?
- There was a small perferation in the kidney which was potentially leaking some urine which would then be absorbed by the body. This could be a cause for the High Creatinine level. Another possibility is the opening in the bladder for the right Kidney was partially blocked by some swelling of the bladder from the tumor. The Kidney could take upto 6 weeks to recover so a "daily" check of the Creatinine level is not nessasary at this time.
How is this procedure going to be different than what they tried Wed.
- Due to the small perferation (see above) they did not attempt to place the stint initially.
James has pain in a square area from the incision, 4 inchs across towards his front and then down 4 or 5 inchs. He walks, moves, gets up and down like a 90 year old man .... will the stint make this better ? Should it be this way now .. 5 days afterwards ?
- Because the tube was put in when the Kidney was enlarged or stretched, the tube could have moved position, even just a cm. now that the Kidney has receeded, this could be causing some irratation.
James cuurently has a cold - Deep thick cough with a stuffy head and running nose, will this effect the procedure schedule ?
- Could or could not be an issue, we would have to see.
What are the risks "disturbing" or breaking the cancer cells, allowing them to spread ? Is the Biopsy report important information to have prior to the Stint ? If so, we will most likely be requesting a 2nd opinion on the pathology and oncoligst treatment from Dana Farber in Boston, should we wait for the stint until after there review ?
- The greatest rick during chemo is infection, during chemo the bone marrow, which is were the cells that fight infection are produced, suffers and the risk of infection increases.
- Dr C. totally agreed with the 2nd opinion.
Procedure to install Stint is scheduled for Thursday the 6th
- Install the internal stint, and clamp off the nephrostomy tube. Allow a day to verify that the stint is working properly and then if things are good, remove the external tube.
- Check-in at 7:00am - no food or water after Wed Midnight
- Tracey, please review with MVP

Call from Dr. Sivak - Pathology Report from FAHC

On Tuesday May 4th I recieved a call from Dr Sivak that the Pahology diagnosis was Anaplastic large cell lymphoma (ALCL) . Additional Site for Anaplastic large cell lymphoma (ALCL) . She said the following things would need to be done.

Install a Central Line Catheter (Blood drawn, Chemo application)
Bone Marrow test and Spinal Tap, CT Scan of the chest, these are used to determine the staging(progression of the cancer)
The Catheter, Bone Marrow and Spinal tap will be done at the same time.

We discussed the 2nd opinion and she said she would get slides sent. I need to give her the contact person and address at Dana Farber.

Conversation with Kerry Ann at Dana Farber.

Have the Pathology slides and report along with the Abdomen CT Scan sent now.
Have the other test results (see above) sent as they are completed.
Contacted FAHC Radiology (Judy), the CT Abdomen films (done 4/21) are available 24/7 1st floor main campus - goto Film Library
Called Dr. Sivak .. Her office said the the Pathology Dept are the ones that package and send pathology slides ... to contact them. I called and left messages on both Dr. Blaszyk's and his secretarys phone ... Follow-up Dr Sivak called, I explained the info I got from Dana Farber . She said she will send the pathology slides to Dana-Farber Wed AM. attention Leslie Lehmann, Pedatric Oncoligist specializing in lymphoma. CT Films will wait

Dr. Long

Called Dr Longs home and office at 11:30. Would like him or someone from his office to corrodinate a meeting with the oncologist, pathologist, himself and us so we can meet in person to discuss findings in better detail to include :

Exact type of ALCL ? ie. is it rare or common ? Fast growing ?

Was the pathology determination straight forward ? Info from web :

- "Accounts for 2-5% of all non Hodgkin Lymphomas"
- "Cutaneous CD30+ (Ki-1) anaplastic large-cell lymphoma (cutaneous CD30+ ALCL) is clinically and pathologically
   heterogeneous (varying), leading to some difficulty in its diagnosis and classification. "

Do the blood test results (Low Red and High White cell counts, high Sed Rate) and Pathology findings make sense.
Discuss fastest way to get Slides and Abdomen CT films to Dana-Farber
Discuss timing of treatment, Nephrostomy stint, as they relate to getting second opinion.

May 5th

Need to contact Dr. Sivak

Reference the call I got from Dr. Blaszyk ie.
- He understands our desire to get the slides sent but there was total confusion yesterday with many people in and out and if there is not just one person in charge things will get lost. Please be patient.
Has she contacted Dr Lehmann ?
Have the slides been sent (please forward me the tracking number) ?
How many case of ALCL has she treated ? Sucsess Rate ?
How involved will Dr Homans be ?

Talked with her briefly at 9:30 ... needed to be short as she is starting her rounds. No new news, Dr Lehmann as not returned her email, the slides are not shipped, she will return my call this afternoon (could not be specific on the time).

Dr Sivak called (2:30pm), the slides are going out today to Dr. Mark Fleming at Dana-Farber

Contacted Dana-Farber

Called Kerry Ann at Dana-Farber, explained the situation with FAHC, She will ask Dr. Lehmann call me.

Need to contact Leslie Lehmann at Dana Farber.

Email to Dr. Lehmann . 11:50am Wed 5th

Confirm she has talked with Dr. Sivak and that we are all set for them to recieve and process the pathology slides.
Ask what other information or data she would like, ie. CT scans
Assumming thier (Dana-Farbers) analysis agrees with FAHC (anaplastic large-cell lymphoma) what is her opinion on :
- Wether treament will be, "standard" National protocol or upto the attending Oncologists ?
- Is there and should we consider Clinical trials ?
- FAHC ability to to manage James treatment ?
- Does she feel that James would be better served at DF and could she take on James as a Patient ?
- If she could take on James as a patient
  - Is Lymphoma her specialty ?
  - How many case of ALCL has she treated ? Sucsess Rate ?
What is her opinion on FAHC's ability to perform the remaining tests, Bone Marrow, Spinal Tap, CT Scan of Chest ...
Long term outlook for James
- Weight_loss
- Hair_loss
- Length of hopital stays

PET Scan

Susan from Pedatrics Oncology called to schedule a PET Scan for James.

Check in at Fanny Allen 1:00 Friday 7th. (James has been pre-registered .. he should go to express check-in)
Water only 4 hrs prior
No Exercise Thursday or Friday
Need to check with Dr Capolicchio to see if the Ureter Stint procedure on Thursday will interfer.
- Called Trace (2:20pm), she will check with Dr C. and also verify appointment time with Interventional Radiology.
- Tracey called back, Dr C. said this should not interfer with PET Scan, scheduled for 7:00am

It takes approx. 24hrs for a PET Scan report, don't expect results until Monday.

Conversation with Dr Homans (4:30pm)

Dr. Homans doesn't consider ALCL as "rare", "more as unusual" or "not as common as others". He is a Pedatric oncologist and has seen and treated ALCL and cancers in the bladder but not ALCL in the bladder. The treament would be systemic, ie. we would assume that microscopic cells have gone else were, so we would not just treat the bladder but instead the whole body in an effort to get any of these microscopic cells that might have gone elsewere. The treatment would be based on National Protocols or using a clinical trails if James fits the criteria. If general, the treatment takes upto a year with treatments every 3 weeks or so. When things are done via National Protocol, they have a "built in 2nd opinion" as the group that sets up and runs the protocols review whats going on. He would assume that the other tests required would be done next week (pedatric surgeons operate tuesdays and fridays).

Ureter Stint Procedure with Interventional Radiology.

Check in at 7:00am Thursday
Nothing by mouth after Midnight

May 6th

James went in for his Ureter Stint at 7:00am. In recovery at 11:00, procedure was successfull. Follow up Ultra sound ordered for tommorow at 11:00.
updateDr Sivak cancelled the ultra sound. She was under the impression that the nephrostomy tube was going to be removed, since it was not, there was no need for the ultra sound.

Called Susan (10:15) at Pedeatric oncology for tracking number of Pathology slides that were sent out yesterday. She will find info and return call within a 1/2 hr.

Susan called back at 10:35 saying she made a phone call to the surgical pathology dept. (the dept that sends it out) and she will call me back as soon as she hears.
FedEx tracking number 840043475361. From the FedEx web page it says an attempt was made to deliver but "Customer not available or Business closed" . Pathology called FedEx and the driver will retry. Susan will call me back when package has arrived. (10:50)
Pathology side recived and signed by M.CHIAVAROLI at 11:15 Thursday.

Picked up CT scan of abdonmen and radiology report to ship to Dana Farber.

Debbie contacted Dana Farber, "once films are on there way we can make an appointment for James to be seen by Dr Lehmann."

Recieved phone message from Debbie Repice (MVP) "Pre approval for PET scan in not required". Left message concerning Dana Farber info.

Susan from Pedeatric oncology called, James has an Ultrasound of left kidney to verify operation of Stint, for 11:00 Friday at Fanny Allen.

May 7th

James is scheduled for a PET Scan at 2:00

Ellen from the VNA is comming over (2nd visist) at 11:00 to show us how to flush the Nephrostomy tube. James Dressing was quite wet so they called Radiology, they were instructed to re-attach the bag, but not to open "valve" until we re-check dressing.

Dr Sivak called. She talked with Dr. Guillot the Kidney Specialist about James creatinine level, (Kidney funtion test). Thier concern is the Kidneys function as they prepare to start Chemo. (the protocols differ based on the value of the creatinine levels). James will collect his urine for a 24hr period. Record start and stop times. Do not include the first void in the sample. He needs to get a blood test the same time at which he returns the sample to the lab.

James has been pre-registered for the removal of the nephrostomy tube (Moday the 10th - procedure at 11:00, check in 20min prior at the express desk.)

James went to Dr Angiers to say hello. Dr Angier listened to James chest (deep cough) and said he will call Dr Long. Dr longs office called to schedule a chest x-ray at the same time as James PET scan. We need to ask at check-in which needs to get done first.
updateChest x-ray was negative.

May 9th Weekend

James' weekend centered around the Ureter stint that was placed on 6th and the nephrostomy tube. Talked with Dr C. on Sat morning, and as instructed we "opened" the nephrostomy tube so that it could drain to the bag (the dressing was getting "wet"). We observed that the bag would fill as James pee'd. Dr C said this was normal and that we should allow the tube to drain to the bag on sat. and then shut the valve on Sunday. James also collected a 24 hr urine sample from 9am sat. to 9am Sunday.

Returned unrine sample Sunday morning and had James' blood drawn.

Closed valve on nephrostomy tube at 1:20pm. The dressing was wetwith urine

May 10th Monday

Sent Emails to Dr.s' Long, Sivak, Homans and Capolicchio.

Whi is person in charge, team captina if you will of James care
Request for daily communications from Oncology team (presummed to be "in charge").

Nephrostomy Tube and Ureter Stint

Discussed dressing being wet with Dr C. he conferred with Dr Bhave (radiologist). Dr. Bhave confirmed the operation of the Ureter Stint (injected Dye) and removed the Nephrostomy tube.

Dr C. said to contact him Tuesday morning if dressing is wet. At that time he may want to place a Catheter in his bladder to reduce the pressure on the Kidney to allow it to heal. He also said the Creatine level is still high and it may be due to the tumor/imflamation in his bladder obstructing the right Kidneys Ureter. He expected that the Nephrologist would be following up with an Ultra sound on Tuesday.

Appointments Scheduled

CT Scan - Wed 5:30pm check-in, 6:00 procedure, FAHC, no special pre-opt
Bone Marrow and Spinal Tap (LP) - Wed 11:00 am FAHC
- Nothing to eat after 5:00am - Clear liquids only until 7:00am
- Pre-opt should call with check-in instructions

Call from Dr Sivak

PET scan looked good, only positive area was the bladder.
Pathologist in Boston still working on diagnosis
Chemo treatments to begin Friday or Sat.

May 11th Tuesday

update On the removal of James Nephrosotmy tube :
Dressing was completely dry (notified Dr C.) James had an ultra sound of both kidneys at 11:00.

Meeting with Dr Guillot at 12:00 :

She reviewed the ultra sounds of kidneys and things look good, specifically the "pelvis" area was empty.
Creatinine level from Sunday blood drawing was 1.8. (severe levels are ~ 10.0)
From the Creatinine level from the Urine collection along and the blood results, it was computed that James kidneys are working at 60%.
James Kidneys are not a concern as far as starting chemo as the drugs he will have for Chemo do not effect the kidneys.
She beleives Chemo treatments to begin Sat.

Appointments Scheduled

Echo Cardio-gram 1:45 Wed the 12th.
- The drugs used for Chemo can effect the heart muscels so this will provide a baseline
Central Line (LP) for Friday with Dr Sartorelli

Did not hear from Oncology team.

Called Debbie Repice, MVP case Mgr, (4:30pm) and left message to notify all upcomming procedures and asking for confirmation concerning pre-approval.
updateShe called Wed. Every thing OK, If Hosptial stay is required, Hospital must notify MVP at "check-in".

May 12th Wed

Spinal Tap (LP - Lumbar Puncture), Bone marrow and Bone Marrow biopsy done Wed morning. The results will be available Thursday.
Echo Cardio Gram was done - things looked good.
CT scan done late wed night - results available Thursday.

Spoke to Dr Long. Pathology report from Dana Farber agrees that it looks like ALCL but does not rule out other, more "obscure" possibilities. Dr. Homans to have another FAHC pathologist take a look. Possible options :

Have James be looked at somewhere else, and wait on treatment.
Have Pathology looked at somewhere else, and wait on treatment.
The above options but start treatment as planned.

Appointments Scheduled

Infuse-a-port, scheduled for Friday 12:30 .. Check-in 11:00 (Delorise) To be performed by Dr. Sartoreli
Thursday at 8:00, Meeting with all "main doctors" to review all results and layout game plan.

May 13th Thursday

Meeting went well (Pam, Myself, Debbie, Dr C. Dr Sivak, Dr Homans, Dr Long and Penny(Oncoligist Social worker)). Decided to proceed with treatment and have Pathology reviewed by University of New York at Syracuse.
updateReport came back from Syracuse and agreed 100% with FAHC.

Link to Chemotherapy Diary .

Misc Links