Post chemo PET scan results

I received my post chemo PET results.  The PET was done about 5 weeks after completing 6 cycles of ABVD + SGN-35 on the LYTSGN3509 trial for treatment of stage IVb noduar sclerosis Hodgkins Lymphoma.  Bleomycin was dropped from the ABVD after treatment 3b due to risk of lung toxicity.

PET report:

Findings:

Low-grade uptake associated with mucosal thickening in the right maxillary sinus and nasal passages bilaterally is in keeping with inflammation.  There is prominent but symmetric uptake in the tonsils bilaterally which is likely physiologic or inflammatory in nature.

No lymphadenopathy by size or metabolic criteria identified in the head and neck, supraclavicular, axillary or inguinal regions.

The diffusely increased lung activity seen on the previous PET/CT has been resolved as have areas of hypermetabolic air space opacification in the posterior aspect of the right lower lobe.  These findings are in keeping with resolution of an inflammatory process.  No new nodules including a stable-appearing 5-mm subpleural nodule in the anterior aspect of the right upper lobe and an 8x5mm nodule in the right middle lobe which remained non-FDG avid.  No increased uptake seen within hilar lymph nodes.  The residual 4.3x2cm nodal mass in the right anterior mediastinum is non-FDG avid.  No new hypermetabolic lymph nodes re identified in the hilar, mediastinal or retrocrural regions. 

No FDG-avid lesions are identified in the liver or spleen.  The spleen measures 12.5cm in greatest transverse dimension.  No increased uptake is seen within upper abdominal, mesenteric or retroperitoneal lymph nodes.  No focal bowel lesions are identified.

No FDG avid or destructive bone lesions were seen.

Note is made of a right-sided central venous access device with its tip in the right atrium.

Impression:

No evidence of FDG-avid lymphoma.  Findings in the right maxillary sinus and nasal passages are in keeping with mild inflammation.

On the lymphoid cancer PET scan grading scale this study is considered  grade 2.

Lymphoid Cancer PET Scan Grading Scale:

1-    Negative scan, no evidence of active lymphoma

2-    Positive scan, unlikely related to lymphoma

3-    Indeterminate

4-    Positive scan, possible related to active lymphoma

5-    Positive scan, likely related to lymphoma

 

 Post treatment monitoring will be bloodwork every 3 months for a year and a CT scan in 6 months.  Typically a CT scan is not done in British Columbia as a standard for post treatment monitoring but Doc Restrepo wanted to have one done to ensure the inflammation observed on the PET scan has resolved and that the nodules in the lung (which are likely scar tissue) have not increased in size.

The relapse rate for late stage classic Hodgkins Lymphoma is approximately 30% with the overwhelming majority happening in the first year.

The Final Day of Chemo

I [Andrew] went with Nadir to his final day of chemo.  This is how the day went.

0700am Wake up.  I can't believe I woke up this early.  This is not my thing.

0730am Jump in cab to go to the cancer centre.

0745am Pay cab driver with credit card; given the cab driver is from Vancouver, he is an ass about it.  Why are cab drivers in Vancouver so rude about taking credit cards?

0750am Talk to nurse about drugs (well, Nadir talks.  I just sit there).

0751am Nadir goes for blood work.  As before, I just sit there.

0759am Decide to keep notes and pretend I knew when I took specific actions up to this point (what I'm telling you is that all the timings up to this point were made up).

0806am So far I have thought about all of the various PD's and LGD's that one faces in life. A range of insurable and uninsurable events. PD = probability of default, while LGD = loss given default.  Getting sick is a low PD, high LGD event, which means it is the kind of thing that one should utilize insurance to cover.

0811am Nadir comes back from his bloodwork and is arguing with the nurse. [Editors Note: There was confusion about how many PK tubes were needed for bloodwork.  The nurse did no listen when Nadir explained to her that 2 tubes 2h pre-chemo were all that is needed until immediately before chemo.]

0841am The nurse gets Nadir a doctor who will fill his prescription again beforehand (because he could not get it from Costco). We head off to see the doctor at 0844am.

0847am Nadir is rude to the doctor's secretary because the doctor hasn't arrived yet. [Editors Note: Nadir wasn't being rude he was simply requesting a place to wait for the doctor, who was due to be in his office in a few minutes, while the rude secretary was trying to get him to leave]

0851am Doctor arrives to write Nadir his prescription. Doctors are more prestigious than bankers. No one hates doctors. Everyone hates bankers. Lots of people hate soldiers too. Do people like writers?  Not that I'm a writer or anything.  Sometimes it's frustrating to work at a job where everyone hates you.  Everyone loves doctors.

0851-0930am We go to get Nadir's new prescription from the pharmacy near the hospital.  I read a few articles in the Globe and Mail on my phone.  We talked about the Air Canada flight attendant strike.  Low-skill labour does not need to be paid >$40k per year.  The free market will deal with this union issue though by rewarding non-union employers.  The government really does not need to intervene.

0930am Arrive back at BCCA. I don't think Nadir was rude to the prescription people, but I was not a very attentive observer in this case. I got A&W for breakfast. Who the fuck puts breakfast food on a hamburger bun? Idiots. The price differential between Starbucks breakfast and other quick-serve is probably not viable outside of Vancouver where the prestige of Starbucks is not much of a draw.

0940am We watch a cute volunteer make tea.  I keep telling Nadir that he should hit on her, but he does not believe it's reasonable to hit on "captive" opportunities.  He likens the cute volunteer to a waitress.

0950am We go into the chemo room. They take some blood. Then we wait because the drugs are late.

1020am Still waiting.

At this point I forgot that I was taking notes.  So I'll ditch the timing estimates and just tell you what else happened.

So at some point the drugs arrived.  And so they hang the drugs up to a machine and then they start to flow into Nadir through his chest port.  Nadir asked the nurse if he could inject vodka directly into his chest in this way.  She did not recommend it; she said that the point of drinking was to actually enjoy the taste.  I am not sure she really knew much about drinking given her response.

Nadir and I started talking about Sons of Anarchy.  The plot of Sons of Anarchy is based on Hamlet, so I was talking about the plot of Hamlet and how Hamlet ends, and we were discussing how they could make the plot of Sons of Anarchy consistent with the end of Hamlet.  We also discussed my work.  By discussed, by the way, I mean generally I just talk.

At some point three ladies came in and one of them (an older Hungarian lady) began her chemo.  I kept talking about a ton of stuff.  At some point Kristen came by.  We talked about her new job.  We talked about how our Thanksgiving had gone.  We passed around photos of Thanksgiving.

At some point Kristen left.  They kept dripping more drugs into Nadir.  He began to get drowsy.  I kept talking.  At some point the nurse stopped and said, "I don't want to be rude, and don't take this the wrong way, but I just have to ask you a question..."

At this point we thought this was going to be an offensive question about the Army, but no.  "Are you in some kind of sales job?  Because I don't know anyone else who could just sit and talk for four hours."

Then the Hungarian lady and her friends joined in and noted that they had spent the entire time listening to our discussion about Hamlet and various other things.  Then began a long discussion about my job, our Thanksgiving, and other stuff.  The ladies were very nice and offered us turkey soup.  We declined, as at that point we were not hungry.  Soon after that, Nadir finished his chemo.  Yay!

So we went back to sit down in the waiting area, because Nadir had to wait for more bloodwork to be done.  I wandered off to go visit my boss from the Army, who was in the hospital that day.

When I came back, Nadir and Sarah were outside playing with Wyatt (Sarah's awesome dog) [Wyatt is a black German Shepherd] in the rain.  They were standing under a tree and throwing a stick for Wyatt.  When Wyatt saw me he ran up and hit me in the face with his head.  Ow!  When a dog hits you in the head, you're not allowed to respond in kind.  It's kind of like a baby.  My niece kicks me in the crotch from time to time (she's one year old), but I merely respond by holding her up to prevent her feet from reaching me.  But she's really cute.  Wyatt is really cute as well.

We threw Wyatt's slimy stick for a while.  Then, as usual, he broke it and Sarah went and got a new stick.  Then we threw the new stick for a while.  Then Sarah drove us back home to have some lunch (late lunch; by this time it was like 4:30pm).  Nadir sat in the back seat with Wyatt.  He is more tolerant of wet dog than I am.  Sarah had bumped someone's car and then left that person a note.  Then the person had taken the wax paper that Sarah had put her note in, put some dirt in it, crumpled it up, and put it back under her window wiper.  Did they think she wanted the wax paper back?  Did they think she was dirty?  Who knows!

We ate turkey leftovers with Sarah.  Mmmm, food.  It was tasty.  Then Kristen came back to the house and drove Nadir back to the hospital for his final test.  Then she drove Nadir back.  By the time Nadir got back, I was already asleep.  I can't wake up that early!  7:00am!  Jeez... Nadir went to sleep right away as well.

That was the day!

Thanksgiving Turducken

Chemo 1A in Review

It has been two weeks since I completed my first chemo treatment and tomorrow is treatment 1B.  At this point I feel mostly normal with the exception of some slight neuropathy (numbness) in my fingers and a really annoying mouth sore.  Both are fairly common adverse effects of ABVD/SGN-35.  The lymphadenopathy in my neck has reduced greatly and I have not experienced any B symptoms since treatment day.

Here is a daily breakdown of my experience starting with the day after 1A infusion:

Wednesday: I was moderately nauseous and fatigued but never felt like I was going to vomit.  Appetite was normal but food, especially water, tasted strange. 

Thursday: Nausea was about the same as Wednesday but I had no interest in food at all for most of the day; all I could stomach was ice cream and a small amount Gatorade.  I was very fatigued and spent most of the day in bed.

Friday: Morning and afternoon were similar to Thursday.  I spent most of the day in bed and didn’t eat until 3PM, but I did go out in the evening and did not feel terrible most of the time I was out of the house.

Saturday: Nausea had mostly subsided by Saturday morning, but I was still very fatigued and my back and legs were very sore (probably due to spending a lot of time standing the night before).  I did not eat much during the day and spent the day in bed but the guys came over for poker in the evening and Timbe brought me turkey dinner leftovers (thanks again dude), which probably meant I ate a sufficient number of calories for the day.  Dinner Saturday seemed to stimulate my appetite; I was hungry again not long after and have not had any issues eating since.

Sunday: Still very fatigued and sore.  Spent most of the day in bed.

Monday-Wednesday: Fatigue had passed and I was feeling pretty normal in the morning but in the afternoon of each day I started feeling nauseous again (WTF; I thought I passed that part already).

Thursday: Nausea passed and my energy levels were pretty good. Numbness in my fingertips started. 

Friday: Developed a mouth sore.  It is not in an area I chew with so it does not interfere with eating too much, but it is painful and annoying.

Saturday-Current: No change. 

I spoke with my Onc yesterday about the nausea and loss of appetite and we decided to adjust my antiemetics for the next treatment.   In addition to the previous protocol I will take Aprepitent (Emend) the day of chemo and for two days following and will take Ondansetron (Zofran) the day after chemo (as opposed to only on the day of).  Hopefully this will do the trick.  In the 10 days following chemo I lost 6.1lbs; we do not want that happening again.

The Last Supper and Chemo 1A

Since I’m not supposed to eat raw meat during chemo (due to risk of infection) the guys and I went to Sushi California in Coquitlam for my final sushi meal.  Sushi Cal has the best spicy tuna sashimi I have ever eaten (and I have tried it at over 40 sushi restaurants in the GVRD).  Julio the Judas did not show up so he will have his legs beaten next week.

Spicy Tuna Sashimi :)

My first chemo treatment was yesterday and went smoothly.  The chemo ward is on the top (6^th) floor of the BCCA; the south side view of Vancouver is excellent.

Infusion started at about 9:15AM after I took my oral antiemetics (12mg Dexamethasone and 8mg Ondansetron).  Accessing my portacath was slightly more uncomfortable than a normal needle poke but was much more comfortable than a peripheral IV once the needle was in.  

The IV drugs started with the ‘Red Devil’ Adriamycin.  Some people can taste this drug (apparently it tastes metallic) and it often causes them to hate drinking red drinks.  I felt a bit of warmth in the back of my throat with a hint of taste but nothing significant; I sucked on a lifesaver, which easily overwhelmed this taste.  Adriamycin also turned my urine red; this could have been disconcerting but I expected it.  Next up were Vinblastine, Hydrocortisone (a steroid to help with nausea and appetite), and Bleomycin (the bastard that can cause lung damage).  Finally we finished with Dacarbzine, and while it is a clear liquid, it comes out in a dark brownish green bag to protect it from light.  We finished with the trial drug SGN-35 (Brentuximab Vedotin).  Infusion finished at 12:35PM but I was not yet free to go.  They needed to keep me for an hour to ensure I did not explode from the SGN-35.  Once freed from the chemo ward I had to hang around the BCCA for 3 more hours to give blood at 2:35PM and 4:35PM.  Luckily I PVR’d the Canucks game so I didn’t miss any of the game.  For more details on the drugs see my Previous Post on the subject.

Post chemo I felt mostly normal; I was tired and wanted to go home but other than that I was fine.  I even went to the gym and managed to get about 30 minutes of cardio in.  In the evening I ate normally without issue.  I did have a lot of trouble sleeping.  Despite being very tired I didn’t not get to sleep until about 4:00AM and was awake by 8:00AM; this is a common issue with large doses of corticosteroids.

The day after chemo (today) I have felt pretty good although I have been fairly tired.  This is probably due to the lack of sleep.  My taste is also off: water tastes terrible which is annoying since I am  used to drinking about 8L (2 gallons) per day.  I have been drinking Gatorade 20 (basically diet Gatorade). Fruit does not taste as sweet as normal and ginger ale tastes ‘off’.  The lymphadenopathy (inflammation of the lymph nodes) in my neck and left armpit is greatly reduced especially on the right side of my neck where the tumor was getting very large (about 8cm x 5cm and very thick).   Hopefully I’ll actually be able to button up a shirt now. ;)

PET Scan Results

On Friday April 8^th 2011 I had a full body PET scan as per the requirements for the SGN-35 clinical trial.  The scan itself was straightforward and uneventful.  About an hour before the scan I was injected with the FDG tracer (radioactive glucose analog that the cancer cells will consume causing them to appear on the scan).  After injection I was not allowed to move around or do anything repetitive including reading or chewing gum as it would cause uptake of the tracer into the area being used so I sat and listened to tunes on my phone and took a short nap. Once my hour was up I spent 15 minutes being scanned on a machine that looked exactly like a normal CT scan machine then was free to go with instructions to avoid children and pregnant women for 12 hours (due to the radiation). 

PET scans measure the degree of metabolic activity by standardized uptake value (SUV).  High SUV indicates high metabolic activity and potentially aggressive disease.  Uptake of the tracer does not necessarily indicate malignancy; inflammation will also cause uptake and organs will consume the tracer.  For post HL treatment scans generally lymph node activity greater than 2.5 is a concern.  One study of the efficacy of PET scans indicated a mean SUV of 7.3 for newly diagnosed HL patients.

PET Scan Report:

Indication

Lymphoma Screening for clinical trial

Technique

438MBq of FGD was administered intravenously following a six-hour fast and informed consent.  Prior to injection, the blood glucose level was 5.3.  Approximately one hour later, low mA non-contrast CT and co-registered emission PET images were acquired of the total body.  Comparison was done with a previous CT abdomen and pelvis dated March 4. 2011.

Findings

There is extensive bilateral mostly lower posterior cervical lymphadenopathy seen (moreso on the right) which is intensely FDG avid, with a maximum update SUV 9.2.  Extensive bilateral surpa and infraclavicular, axillary, mediastinal and bilateral hilar lymphadenopathy is also seen with intense FDG update [SUV max 8.8].  Multiple pulmonary nodules are seen with focally increased FDG uptake [SUB max 5.8] likely representing pulmonary involvement.  Pericardial effusion is seen with no pleural effusion.

Splenomegaly is seen with 3 focal moderate to intense FDG-avid lesions [SUV max 6.8].  Multiple retroperitoneal, celiac, gastrohepatic and lower para-aortic FGD-avid lymph nodes are seen with intense FGD activity [SUV max 8.6].  No other focal FDG avid abdominal or pelvic lesion is seen.  Mild diffuse activity in the right psoas muscle.  No definite focal FDG avid osseous lesion is seen but there is mild diffuse accentuation of bone marrow activity and bone marrow involvement may be present.

Impression

Extensive widespread intensely FGD avid lymphadenopathy, with splenomegaly and multifocal spleen lesions, pulmonary lesions and possible bone marrow involvement. 

My Translation (written specially for you Rez):

There is extensive enlargement of the lymph nodes on both sides of the neck (moreso on the right) with a maximum uptake value of 9.2.  Extensive enlargement of the lymph nodes on both sides of the chest with a maximum uptake value of 8.8 (see image below for specific locations).  Multiple collections of cells are seen in the lung with maximum uptake value of 5.8, likely representing lung involvement.  Excess fluid surrounds the pericardium (sack that contains the heart and the roots of the great vessels.) with no fluid around the lungs (a previous CT showed a pleural effusion but it went away when I was on Dexamethasone in late February after having my wisdom teeth removed). 

Enlargement of the spleen is seen with three moderate to intense lesions with a maximum uptake value of 6.8.  Multiple abdominal cavity lymph nodes are seen with a maximum uptake value of 8.6 (see image below for specific locations).   Mild diffuse activity in a right pelvis muscle.  No definite bone lesion is seen but there is mild scattered increased bone marrow activity indicating possible bone marrow involvement (bone marrow biopsy performed February 15^th 2011 showed no bone marrow involvement).

The PET results indicate there may be bone marrow involvement although the previous BMB was negative.  Given that the BMB was done almost 8 weeks ago it is possible that bone marrow involvement started after the biopsy.   In addition it is possible for BMB’s to produce false negatives.  I have not spoken with Doc Restrepo about this yet but I don’t expect them to perform another BMB to find out since the results would not change the treatment plan.  Bone marrow involvement is not considered an adverse prognostic factor.

Treatment (6 cycles of ABVD + SGN-35) will start on April 19th at 0900.

Click for 360 view

The Decision

Yesterday I went to see Doc Restrepo to discuss the SGN-35 and give him my decision.  Before arriving at his office I was pretty sure I was going to join but I wanted to hear what he had to say first.  Doc and I both believe joining the trial is a good decision for me.  The drug’s success rate with relapsed and refractory patients has been excellent and other monoclonal antibodies have been very effective when combined with chemotherapy for frontline Lymphoma treatment.

During the physical Doc noticed minor lymphadenopathy in my left armpit.  This was not present during the last physical.  The enlarged node is approximately 7.5mm (my estimate).   

I have a PET scan scheduled for April 8^th.  Normally in BC PET scans are not done before frontline treatment but it is a requirement for the clinical trial so I will be getting one.  In the US and UK PET pre-treatment PET scans are the standard for staging, but in BC normally just a CT scan is done. PET scans differ from CT’s in that they show molecular activity instead of structure.  This is achieved by injecting the subject with a radioactive glucose analog then monitoring its uptake into cells with a gamma camera.

Chemo will begin on April 19^th 2011.  In case it wasn’t clear in my previous post I will be getting SGN+35 in addition to the original treatment plan of six cycles of ABVD, rather than instead of.

Toby the Tap

I had my portacath (port), henceforth ‘Toby the Tap’, ‘Toby’ or ‘Tap’, installed yesterday.  Toby is a Bard Power Port (approx. $60USD+install). Installation is a short procedure, about 30 minutes, using local anesthetic and conscious sedation.  Two incisions are made, one in the chest for the reservoir and another in the neck where the catheter bends toward the heart.   The reservoir is about the size of a quarter, the catheter about the diameter of a cooked spaghetti noodle.

Often people do not remember when coming out of conscious sedation.  This was my third time being sedated and the second of the three that I remember what happened.  Unfortunately there wasn’t much to remember as my face was covered with a sheet.  I asked Doc to allow me to watch but apparently that is a no-go which was extremely disappointing.  So I lay there for thirty or so minutes staring at a blue sheet listening to Doc give instructions and answer questions (sounded like he was teaching someone).   The procedure was mostly painless save for when the catheter was being pushed into my chest, as lot of pressure was put on my neck on the side with severe lymphadenopathy (inflammation of the lymph nodes), which was fairly painful.  Once the Lidocaine wore off, a couple hours after the procedure, the upper incision was moderately painful; however, a bit of opium took care of that (technically Percocet but opium sounds cooler).

Tomorrow I have an appointment with Doc Restrepo and a nurse with experience administering SGN-35.  I will decide then whether or not I am going to join the trial.  I am pretty sure I know which way I will go, but if I spill the beans now I’ll have nothing to write about tomorrow. ;)

Decision Time

Doc Restrepo called me yesterday to let me know Seattle Genetics has opened a clinical trial for their new drug SGN-35 (Brentuximab Vedotin) that I qualify for. This is a phase I trail for evaluating the safety of SGN-35 combined with ABVD for HL treatment.  SGN-35 will be administered at 0.6-1.2 mg/kg with each ABVD treatment.

SGN-35 is an antibody-drug conjugate targeted to CD30 (that’s the bad guy we want to whack).  Results have been published from two SGN-35 trails: one for relapsed and refractory (disease that resists treatment) HL patients, and the other for Anaplastic Large-cell Lymphoma (ALCL, a type of non-Hodgkin’s Lymphoma).  In both trials SGN-35 was used alone not in conjunction with chemotherapy.  

In the HL trial 75% of 102 patients achieved an objective response (complete or partial remission), as assessed by an independent review.  34% of patients achieved full remission.  Tumor reductions were achieved in 94% of patients.  18 patients discontinued this trial due to adverse events. To qualify for this trail patients must have previously received an autologous stem cell transplant (ASCT, that means they collect your own stem cells before a chemotherapy regimen kills your immune system then transplant the collected stem cells to re-grow the bone marrow).  The median number of previous chemotherapy regimens for patients in this trail was 4 (range 1-13).

The ALCL trial included 58 patients.  All patients had previously received front line treatments.  SGN-35 was administered alone once every 21 days by IV (1.8mg/kg).  86% of patients achieved an objective response to the drug.  53% achieved complete remission. The most common adverse events were nausea (38%), peripheral neuropathy (38% - numbing of the fingers and the toes), fatigue (34%), fever (33%) and diarrhea (29%).

If I decide to join the trail I will have to get several blood test and scans (CT and PET).  This will delay the start of treatment by about two weeks.  Doc Restrepo feels that given the positive response to the Prednisone and Cyclophosphamide I was on delaying treatment will not adversely affect prognosis. While taking the drugs all of my b-symptoms were relieved but since completing the cycle I have experienced some fatigue and discomfort in my neck.  Both are very minor compared to before the drugs but I am concerned that will change inside of three weeks.  I cannot take the Prednisone or Cyclophosphamide in the interim due to the side effects, and as a result I risk the disease progressing in the interim. 

Re-staging

I received a call from my Oncologist today to tell me that a committee, after reviewing my CT scans, has decided that I have stage IV HL not stage III.  This is due to the pericardial effusion and masses in my lungs.  The committee still believes the original treatment plan is the best course of action so I will start six cycles of ABVD on April 1^st 2011.

My Hasenclever Hodgkin’s Prognosis Score (IPS) is 3.  This means I have a predicted 5-year freedom from progression of disease of 60% and overall survival rate of 78%.  The Hasenclever system was developed in 1998 using data from patients who were treated with ABVD or MOPP chemo regimens.  The risk factors in the Hasenclever system which are present in my case are: sex (male), stage IV disease and white blood count ≥ 15,000/µl. When I had my first CBC in January 2011 my WBC was below the threshold to be considered a risk factor based on Hasenclever. 

Other studies have shown the most important adverse prognostic factors are: mixed-cellularity or lymphocyte-depleted histologies [no], male sex [yes], large number of involved nodal sites [yes], advanced stage [yes], age of 40 years or more [no], the presence of B symptoms [yes], high erythrocyte sedimentation rate (results not in yet), and bulky disease (widening of the mediastinum by more than one third, or the presence of a nodal mass measuring more than 10 cm in any dimension) [no].

Drugs, Drugs, Drugs

I have received my pre-chemo and chemo support drugs.  Between these drugs and the drugs I received during diagnosis I have a pretty nice pharmacy at home. ;)

As mentioned in my last post I was given Prednisone and Cyclophosphamide (100mg each per day for several days) to ease the inflammation and symptoms of HL.  These have done a magnificent job. Within two days of starting the drugs the lymphadenopathy in my neck has reduced greatly and I am no longer suffering from fatigue, night sweats or fevers.  

The only side effect I have noticed thus far (I am on day six of seven) is an insatiable appetite (common side effect of corticosteroids, in this case Prednisone).   From three to four days after starting the Prednisone I have been unable to satiate my appetite no matter how much I eat or how full my stomach is.  No matter what, I always feel like eating.  Yesterday, after eating far too much food during the day, I went to Players Chop House for dinner.  Apparently the largest prime rib on menu, the 16oz Player size, was not big enough for me.  I ordered the “Texas Player Size” (I named it that after telling the waitress I was from Texas). 

The meal was so large that every server in the restaurant came by to examine my progress and note their amazement.  I ate the entire plate of food, plus half a dish of additional mushrooms, plus half of a dessert.  I also drank two beers.  This is after eating a considerable amount during the day leading up to the event. 

My chemo protocol will consist of three support drugs and the ABVD chemo regimen.

Chemo Regimen:

Adriamycin - Comes from a fungus which is found in soil. It works by stopping DNA replication. It is also known as Doxorubicin or The Red Devil due to its colour.  Side effects of Adriamycin include: nausea, vomiting, heart arrhythmias, neutropenia (decrease in while blood cells) and alopecia (hair loss).  Once dosing reaches 550 mg/m², Adriamycin can be cardiotoxic.

Bleomycin - Also from a soil fungus. This one acts by breaking up DNA.  The most serious side effect of Bleomycin is pulmonary fibrosis (hardening of the lungs) leading to permanent lung impairment.   This should be avoidable by monitoring pulmonary function and correct dosing. Other side effects include: fever, rash dermatographism, hyperpigmentation, alopecia and Raynaud’s phenomenon (discoloration of the fingers and toes).

Vinblastine - Interferes with cell mitosis (mitosis is half of the process of cell division). It is a vinca alkaloid similar to Vincristine but with fewer side effects. It comes from a Periwinkle plant native to Madagascar.  Common side effects of Vinblastine: bone pain, constipation, depression, diarrhea, general body discomfort, headache, jaw pain, loss of appetite, nausea, stomach pain, and vomiting.

Dacarbazine - Breaks up DNA and RNA and prevents their synthesis.  Dacarbaize can be painful when given intravenously.  Often it is diluted with saline to ease the pain.  If the needle is not in the vein correctly it can also cause muscle/nerve damage.  This should not be an issue for me as I will receive my drugs via a port.  Side effects of Dacarbazine: possible permanent sterility (mitigated through prior deposits), immune suppression, nausea, headache and fatigue.

The combination of drugs increases the likelihood of developing Acute Myleoid Leukemia 5-7 years after treatment.  Short term or permanent peripheral neuropathy (numbing of the fingers/toes) is also a risk with the regimen.

Support Drugs:

Ondansetron (pre-chemo) – Is used mainly and an antiemetic to treat nausea and vomiting from chemotherapy.  It has little effect on vomiting and nausea caused by motion sickness.  Ondansetron is a well-tolerated drug with few side effects. Constipation, dizziness and headache are the most commonly reported side effects associated with its use.

Dexamethasone (pre-chemo and two days following) – Is a strong corticosteroid 4-5x more powerful than Prednisone.  It is anti-inflammatory and immunosuppressant.  Its primary use for me will be to augment the effects of Ondansetron.  Apparently Dex is popular among Bangladeshi prostitutes because it helps them gain fat easily, which is attractive in the poor country.   Most common side effects: weight gain due to increased appetite, immunosuppression, psychiatric disturbances, including personality changes, irritability, euphoria, and mania.  Withdrawal is common issue with Dex.

Metoclopramide (As needed) - Is an antiemetic and gastroprokinetic agent (it enhances gastrointestinal motility).  Common side effects include: restlessness, drowsiness, dizziness, lassitude, and/or dystonia.

I have discussed switching the Dexamethasone with Aprepitant.  My Oncologist would like to wait until we see how infusion 1A goes before deciding to switch, as Dex is the standard given by the BCCA.  Aprepitant has far fewer side effects than Dex but is very expensive; however, given my medical coverage this will likely not be an issue.

Shrinkage and Meat Slam Pt. 1

I’ve been taking Prednisone and Cyclophosphamide for two days now and they have already made a significant impact on the lymphadenopathy in my neck. The supraclavicular lymph node that had grown to ~7cm and was causing me significant discomfort is now about 4.5cm and painless. In addition I haven’t had a fever since starting the drugs although the night sweats persist.

My first chemo has moved due to a conflict with my port install. I will now receive my port on March 29th and chemo 1A on April 1st. A port or portcath is a medical appliance installed beneath the skin that connects a catheter to a vein. This will allow me to receive IV drugs and have blood drawn without using veins in my arm. The benefit of using a port is prevention of damage to veins and eliminating the risk of drug leakage into muscles (leakage can cause permanent muscle damage).

 

During chemo I will not be permitted to eat raw fish or raw meat due to risk of infection.  Six months without sushi or rare beef requires some preparation; I started this today at The Keg.

16oz of sexy:

Staging and Treatment Plan

I saw my Oncologist for the first time today.  I am being treated by Dr. Diego Villa Restrepo at the BCCA.  Yeah, his name is Restrepo.  Go see the movie.  It's good. 

The CT results of my abdomen and pelvis showed involvement below the diaphragm so I have been officially staged as IIIb.

CT Abdomen and Pelvis Report

History

Work up Lymphoma

Technique

Contrast enhanced images were obtained through the abdomen and pelvis.

Findings

There is a moderate-sized pericardial effusion identified measuring up to 1.6cm in thickness.  There are enlarged lymph nodes up to 15mm short axis anterior to the esophagus near the abdomen hiatus. Enlarged lymph nodes are also present in the gastrohepatic ligament and cellac axis region measuring up to 2.1cm short axis.  Enlarged paracaval lymph nodes are seen from the level of the SMA distally.  These measure up to 18mm. From the level of the aortic bifurcation distally there are small lymph nodes present but none are markedly enlarged. A right lliac chain lymph node measures 10mm short axis.  The spleen measures up to 15.9cm and contains three round low-attenuation lesions measuring up to 14mm.  These do not appear cystic.  No focal hepatic lesions are seen and the gallbladder, adrenals and pancreas are within normal limits.  No focal renal abnormalities are seen.  There is a trace of free fluid in the pelvis.  The appendix is unremarkable.

Impression

Pericardial effusion. Splenomegaly with associated focal splenic lesions which can be seen in lymphoma.  Mild intra-abdominal and pelvic lymphadenopathy which is more prominent in the epigastric region.

Treatment will be 6 cycles of ABVD chemotherapy.  Each cycle of ABVD is 28 days with an infusion on the 1^st and 15^th day.  Post chemo I will receive a CT and possibly PET scan to determine whether or not radiation will be necessary.   I will post more details about ABVD later this week.

Pre-chemo I will have an echocardiogram to get a baseline heart function to compare against during treatment should heart issues arise.  The A drug in ABVD, Adriamycin, can be cardiotoxic, which means it can be toxic to the heart. 

I have been prescribed Prednisone (100mg every morning for 7 days) and Cyclophosphamide (100mg every morning for 7 days) to ease the inflammation and increase comfort while waiting for chemo to start. 

ABVD will likely begin on March 29^th.

The beginning

On March 10^th 2011 I was officially diagnosed with Nodular Sclerosing  Hodgkin’s Lymphoma.  I have created this blog to keep those interested up to date on what is happening with my treatment and to hopefully provide some insight for others diagnosed with HL on what to expect during treatment.

In early Jan 2011 I visited my GP about a small lump in my neck.  At the time I had no other symptoms.   After examination of the lump he ordered blood work, which revealed I was slightly anemic.

Blood Results:

	Flag	Results	Reference Range	Units
Hematology
WBC	H	11.5	4.0 - 11.0	10*9/L
RBC		4.69	4.30 - 5.90	10*12/L
Hemoglobin	L	115	135 - 180	g/L
Hematocrit	L	0.37	0.41 - 0.52	L/L
MCV	L	78	80 - 100	fL
MCH	L	24.5	27.0 - 34.0	pg
MCHC	L	314	323 - 365	g/L
Platelet Count		384	150 - 400	10*9/L
Differential
Neutrophils	H	8.8	2.0 - 8.0	10*9/L
Lymphocytes		1.7	1.0 - 4.0	10*9/L
Monocytes		0.7	< 0.9	10*9/L
Eosinophils		0.2	< 0.8	10*9/L
Basophils		<0.1		10*9/L

Upon receiving the blood results he performed a physical, ordered more blood work, a urine test, and a chest x-ray.  Shortly after this appointment I started experiencing many typical HL symptoms.  Several other lymph nodes in my neck became inflamed to the point that they were visible.  They did not hurt but there was discomfort when I moved my neck.  I also experienced discomfort in my chest, difficulty breathing at times, mild fatigue, night sweats, increased resting heart rate at times, and skin irritation.

Chest X-Ray Report

Widening of the right side of the mediastinum is noted consistent with right paratracheal and right azygos lymphadenopathy. Slightly enlarged bilateral hilar lymph nodes cannot be excluded. Subcarinal lymphadenopathy cannot be excluded either. A small amount of fluid is present in the right-sided fissures. Peribronchial thickening is present in the right lower lobe. Minimal patchy consolidation is also present in the right lower lobe. The heart and left lung are normal in appearance.

Impression

Right-sided mediastinal lymphadenopathy. Bilateral hilar and subcarinal lymphadenopathy cannot be excluded.

Right lower lobe bronchopneumonia. Small right pleural effusion.

The findings are consistent with Hodgkin's disease. Sarcoidosis cannot be excluded although the small right pleural effusion is unusual.

Surgical consultation and CT scan of the chest is recommended.

As you see from the report, the chest x-ray was the first indication I had HL.  I was referred to a Pulmonologist who performed a fiberoptic bronchoscopy with biopsy; I also had a CT scan.   Pathology of the sample retrieved from my lung during the bronchoscopy showed no evidence of Lymphoma or Sarcoidosis. 

CT Scan report:

CT Neck and chest enhanced

History

Severe clavicular and mediastinal lymphadenopathy, sarcoidosis or Hodgkin’s disease.

Comparison

No prior studies available for comparison

Findings

Extensive lymphadenopathy throughout the next measuring up to 2.1 cm in short axis diameter.  Extensive lymphadenopathy in both supraclavicular regions.  No other soft tissue abnormalities in the neck.

Extensive mediastinal lymphadenopathy.  A large heterogeneous anterior mediastinal mass measuring 6.1 x 3.8 cm in axil diameter in most likely confluent lymphadenopathy. Lymphadenopathy also involves the hilar regions and subcarinal region.  No axillary lymphadenopathy.  No pericardial effusion.  The cardiac chambers are normal in size and appearance.

At least six small non calcified pulmonary nodules are scattered in the right lung, most of which are either subpleural, or along the interlobar fissures.  No definite pulmonary nodules in the left lung.  The trachea and central bronchi are patent and normal in caliber.

Limited images of the upper abdomen are unremarkable.  No suspicious destructive osseious lesions in the neck and chest.  The overlying soft tissues are normal.

Impression

Extensive lymphadenopathy in the neck, supraclavicular regions and throughout the mediastinum with a large confluent nodal mass in the anterior mediastinum.  The differential diagnosis includes sarcoidosis or lymphoma, but the presence of scattered non calcified pulmonary nodules, most of which are subpleural or along the fissures favours diagnosis of sarcoidosis.

The Pulmonologist referred me to a surgeon to have a larger sample taken from my neck.  The surgeon disagreed with the CT doctor's findings he felt sarcoidosis was very unlikely.   To confirm diagnosis of HL an excisional biopsy of an infected lymph node must be performed, as a needle biopsy will not provide a sufficient sample.  The surgeon took a 1.6cmx1cmx0.6cm sample from the right side supraclavicular lymph node. This was the first to become enlarged and is by far the largest node.

Scar the morning after biopsy

       

 Scar about a week later:

In addition to the lymph node biopsy a bone marrow biopsy was performed to determine whether or not the cancer had spread to the bone marrow. Bone Marrow involvement would mean stage IV disease which has a much poorer prognosis than stage I-III, which are all quite similar.

The bone marrow biopsy came back clean.   Results from the CT of my abdomen and groin are not in yet so we do not know if it is stage IIb or IIIb disease.   Stage II indicates that more than one lymphatic region is affected (in my case three, both sides of the neck and my chest) on the same side of the diaphragm.  The ‘b’ indicates I exhibit systemic symptoms. Stage III indicates lymph node involvement on each side of the diaphragm.

Diagnosis has taken about 10 weeks.  In that time my right supraclavicular lymph node has grown from ~2cm long to ~7cm in length.  During the past 3 weeks I’ve been having low-grade fevers almost daily (200mg of Ibuprofen has helped A LOT) and the fatigue has become much worse.

Prognosis for HL is very good, with recovery at over 80% for my stage and age. I will likely receive six months of ABVD chemotherapy, possibly followed by radiation therapy.

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