Six month post chemo check-up and TNT

I recently went into the BCCA for my six-month post chemo checkup.  The typical routine was followed: physical, blood work and CT scan.  Anecdotally I feel excellent, all of my residual chemo side effects have cleared up, with the exception of very minor residual numbness in my fingertips.  Most importantly I don’t seem to have any issues relating to lung toxicity from Bleomycin, which was enough of a concern during treatment that the doctor decided to discontinue the use of Bleo on me.  I have not symptoms of HL.  My blood work came back normal.

Here is the CT report:

CT Chest

Clinical Statement: Hodgkin lymphoma post chemotherapy.  Residual mediastinal mass; evaluation of pulmonary nodules; post Bleomycin lung toxicity.

Technique: Helical pos contrast images were obtained from the thocacic inlet to the diaphragm.

Comparison: 11/11/02

Findings: The dominant hypodense prevascular lesion is decreased in size and attenuation a 2.7x1.8cm, previously 3.3x2.3cm.  Triangular shaped soft tissue extending along its antrosuperior margin has slightly increased, consistent with thymic hyperplasia.  Additional mediastinal adenopathy is decreased, with subcarinal now measuring 1cm AP, previously 1.6cm.  No effusion.  Two left upper lober punctate nodules, three subcentimeter left upper lobe nodules are likelt unchanged. There are, however, two new ill-defined subcentimeter nodules medially in the right upper lobe, and in the left lower lobe.  No interstitial disease or fibrosis.  No osseous change.

Impression:

1.     Slightly decreased residual mediastinal adenopathy, with evidence of treatment.

2.     2. New subcentimeter right upper and left lower lobe punctate nodules may represents inflammatory or infectious disease, but short interval follow up CT suggested for confirmation.

3.     No evidence of interstitial pneumonitis.

In short this means:

1. The primary residual mass in my chest has shrunk

2. My Thymus (an orgran of the immune system) may be enlarged.

3. Other smaller masses in my chest have decreased in size or are the same

4. There are two new nodules in my chest, less than a centimeter.

5. There is no effusion or other indication is disease.

My comments:

1.     This is obviously good, the residual mass is likely scar tissue.

2.     Unsure of what to make of this.  The doctor didn’t mention it to me and I had not seen the report when I met with him so I was unable to ask.  He didn’t think it was worth mentioning so ‘meh’.

3.     Same as 1

4.     Urgh, well that is annoying.  These are very small and not nearly interesting enough to warrant concern especially given the lack of related symptoms and good blood work.  Unfortunately it does mean more scanning and radiation but that is certainly more appealing than getting biopsied (which probably isn’t even an option due to the small size of the nodules, I believe they need to be 2cm or larger to be able to effectively biopsy with an endoscope).

5.     Good.

So that concludes my six month check-up.  I would have preferred “all is well, screw off for six months” instead of having to go back in September for more testing but obviously it could be worse, much worse.  

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In other news I have recently started training to compete in a triathlon with Team in Training to fundraise for the Lymphoma and Leukemia Society of Canada.  Aside from crashing my bike once (oops, luckily was not significantly hurt) training is going very well, my cardiovascular fitness and strength are both better than they have ever been.  If I get around to it I may post a training video.  If you’d like to donate some money to LLSC I’d really appreciate it and you’d be doing some good in world. :)

My Sponsorship Page

Team in Training Canada

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.