Today was the big day to learn exactly how involved my MCL was.
Our appointment started off with a bright moment - on arrival we signed in and I sat down in the waiting room while Kimmie went off to inspect the restroom. No sooner did my butt hit my seat and out from somewhere in the exam room area trotted Cashew. Cashew is Dr. Rovira's Golden Retriever. Dr. Rovira is Dr. Lee's partner. You can imagine my delight and surprise to see a Golden headed my way on this day and in this setting. I was thrilled!
Cashew trotted directly over to me and in the way that I believe only a Golden Retriever can reminded me with those brown eyes to keep a Golden's attitude about me - the same advice I have received from my own Golden, Aspen, on numerous occasions. Cashew and Aspen's advice are summed up in the last six lines of Bob Marley's famous song:
don't worry, don't worry, don't do it,
be happy, put a smile on your face,
don't bring everybody down like this
don't worry, it will soon pass whatever it is,
don't worry, be happy,
i'm not worried
Then Cashew left to attend to others. Shortly after that the medical assistant took me back for what I thought was to be yet another blood draw. Not this time though, just weight and blood pressure and off to meet with Dr. Lee.
Dr. Lee met us in an exam room and shared the results of the tests I'd undergone throughout the week. Significantly, the PET scan revealed that the lymph nodes involved are confined to areas in my neck and pelvis. Surprisingly, the lump on the left side of my throat that I noticed is the smaller one, my tonsil (a lymph node) on the right side is the larger and I can't feel or see it.
The rest of the body appears clear of cancer. A welcome surprise according to Dr. Lee in that my torso and organs all seem to be healthy in spite of my 38 years of abusing them. The greatest 'activity' is in my tonsils and that is classified as moderate. All the other areas reflected minimal activity. 'Activity,' i.e. where cells are absorbing the radioactive sugar used for the PET scan quicker, is the indicator of where the cancer is and the degree (moderate vs. minimal, etc.) is an indicator of how "hungry" those cancer cells are acting - which translates to how aggressive they are being as far as I can tell. So this was good news.
The bone marrow aspiration and biopsy is still being fully analyzed but preliminarily it appears that my bone marrow is not significantly, if at all, involved. That is also good news because that involvement would mean the likelihood of my having to do a bone marrow transplant (BMT) down the road. Right now, Dr. Lee has confidence that I don't have bone marrow involvement but a test that is currently in process and won't be done for 5 or 6 days will give us a definitive answer.
So what this all means is that I have Stage 3 MCL - but that is because I have it in a plane of my body below and above my diaphragm and on opposing sides of my body. My sense is that Stage 3 is a broad classification in which might be further termed by me as a "good" or "bad" Stage 3. Dr. Lee left me with the feeling that this is a "good" Stage 3 in that the volume of cancer is small and it is limited to those two areas of my body.
The MUGA heart scan revealed that my heart is healthy and can weather the intensiveness of the chemotherapy. The big thing that is being looked for here is the ejection fraction percentage of the left ventricle of the heart, which is one of the most important metrics in assessing heart performance. Healthy individuals typically have ejection fractions greater than 0.55, mine was measured to be greater than 0.60. More good news.
What's Next
So now, with the testing done and it being determined that I am a Stage 3 the plan is to begin what by all accounts is a most intensive chemotherapy named R-HyperCVAD.
The R is for Rituxan (Rituximab) which is a cancer medication that interferes with the growth of cancer cells and slows their growth and spread in the body. I will get this Monday morning and it is given at Dr. Lee's office and I would then typically go home afterward; This first Monday of treatment being different because I will be going from the chemo straight to the hospital for surgery to install a Port. More on that in a bit.
The term 'Hyper' in HyperCVAD refers to the hyperfractionated nature of the chemotherapy, which is given in smaller doses, more frequently, to minimize side-effects. 'CVAD' is the acronym of the some of the drugs used in courses A and B. The protocol was originally developed to treat leukemia in young, fit and ambulant patients. Hyper-CVAD chemotherapy is generally reserved for use in the treatment of serious and aggressive forms of hematological malignancy, MCL fits that. There are serious side-effects and complications arising from the administration of the various agents, which require careful management in an appropriate health-care setting which is why, starting Tuesday, I will be calling St. Anthony's North Hospital home until Friday.
On this first week of HyperCVAD I will be doing course A. That means I will be given the following drugs:
Cyclophosphamide (Cytoxan®) which is an alkylating agent
Vincristine (Oncovin®) is a mitotic inhibitor
Doxorubicin (Adriamycin® or Rubex®) is an antibiotic with anti-tumour effects
Dexamethasone is an Immunosuppressant
Cytarabine or Ara-C (Cytosar®) is an antimetabolite
Mesna (Uromitexan®) is a compound used to reduce the incidence of haemorrhagic cystitis, a common side-effect of the administration of cyclophosphamide.
Methotrexate, an antimetabolite
Following this week of chemotherapy I will be going home on the weekend, and beginning three weeks of recovery to build up my immune system. After those three weeks I return for another round, "course B," which I will have more information on when that time arrives. For now, what I've been told about course B is that it is more intense than course A.
Going back to the port I will be having surgically installed this Monday afternoon. This port is put in for two reasons mainly. First, with a port I won't have to be constantly stuck with needles in veins to get the chemo, draw blood, etc. Second, the drugs of this chemo are too harsh and it helps to put them in near the intake vein of the heart, the superior vena cava, and allow them to be pumped around.
A port consists of a reservoir compartment (the portal) that has a silicone bubble for needle insertion (the septum), with an attached plastic tube (the catheter). The device is surgically inserted under the skin in the upper chest or in the arm and appears as a bump under the skin. It requires no special maintenance and is completely internal so swimming and bathing are not a problem. The catheter runs from the portal and is surgically inserted into a vein (usually the jugular vein, subclavian vein, or superior vena cava.) The septum is made of a special self-sealing silicone rubber; it can be punctured up to one thousand times before it needs to be replaced. Sounds pretty cool and after being a pin cushion this week I'm happy to get one installed.
In Summary
All in all the news is good and the prognosis is better than I thought it might be. Dr. Lee says that given my younger age (guess that's all relative) and good health - making me able to do the particular chemotherapy I will be doing, he is confident that the cancer will be wiped out. The problem with MCL is more in its tendency to want to come back. However, Dr. Lee feels that we have a 70 to 80 percent opportunity to have this "cured," by which he means it is gone and stays gone.
For right now the primary concerns are related to the toxicity of the chemotherapy, which can kill, and the infections that I will get when my immune system is down. Both of those concerns are going to be monitored very closely throughout my treatment and are simply unavoidable.
This post is being published ahead of posts which are going to describe how we got to today but this was important information that many have asked for.
Thank you for your continued support, I am truly humbled by the sheer number of people that are calling, e-mailing, and seeing us.
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