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. ;)

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.

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.

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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