Monday, November 3, 2008

Wooooooooo Whooooooooo

Mostly great news at the doctor.... some of this is review but now from the doctors mouth:
  • CT scan of pelvis and abdomen all clear

  • Bone Marrow - all clear

  • MUGA - 74% (normal is 50% or greater)

  • Spinal fluid - all clear. Elevated protein levels but not sure why and Dr. Hamm is not concerned. When I first had the spinal tap I was given a shot of chemo as a preventative measure and I mentioned in my blog that she told me that I would be getting 5 more Spinal Taps. At the time, I thought it was for testing, but it is part of the treatment for this type of cancer - as a preventative measure. So I'll be getting five Spinal Taps within 2.5 weeks right after the CHOP-R.

  • Gallium - there is activity in sub-mandibular area in the salivary glands. Dr. Hamm is kind of concerned with this and will continue to monitor it. It may even be gone already (because it was pre-chemo) and likely isn't Lymphoma. She does not want to remove this with surgery because it is a horrible surgery (and it could be gone). She also wouldn't radiate this because I would lose my teeth. Yuck.
  • LDH levels - 125 (no idea what that means) but it is normal.

Bottom Line: Stage 2 and low risk. FANTASTIC.

I asked a few more questions...

  • Stage 2 because: The cancer is only on one side of the diaphragm (this was found using the CT scan - negative results for pelvis and abdomen); Negative bone marrow biopsy (this was found doing the bone marrow biopsy and aspiration); Negative spinal fluid; and no B symptoms (night sweats, unplanned weight loss and fever)

  • Low risk is based on the the FLIPI (Follicular International Prognostic Index) score...see this link for more information (Click here). Essentially, I am a 0 (zero), or LOW risk because I am under 60 years old, Stage 2, regular LDH levels, regular Hemoglobin and less than 4 extra nodal sites.

Excerpt from the above noted website:

In the pre-Rituximab era patients with 2 or more risk factors have less than a 50% chance of relapse-free and overall survival at 5 years. However the proposed revised IPI indicates since the inclusion of Rituximab with CHOP there are three distinct prognostic risk groups.

0 risk factors, very good - 90% progression free survival @ 5 years
1-2 risk factors, good - 80% progression free survival @ 5 years
3-5 risk factors, poor - 50% progression free survival @ 5 years

  • Blood work results - my results from October 22 were normal and on the 29th I had low White Blood cells ( 1.8 & normal range is 3.6 - 11.0) and Neutrophils ( 0.3 and normal range is 2.0 to 7.5).

  • Blood work (Complete Blood Counts - CBC) - we are kind of concerned with the timing of all of this. As of now, I am to get my blood counts every Wednesday. This is mainly to fall in line with the fact that I have to get blood work done just prior to my chemo sessions (which are every 3 weeks on Thursday's). The reason for this is to make sure my WBC (white blood cells) and platelets are high enough to get the chemo. The concern is whether the timing of these tests is appropriate. The range of critical time is from day 6 to day 14 and Dr. Hamm noted today that day 10 is the most important. So...why do I not just get tested on day 10? (once again, I am currently tested on day 6, 13 and 20). I feel that I should know when my blood counts are low...I should be more careful when they are...So, the solution, as discussed with Dr. Hamm: different timing for tests and Neupogen. I will now go for my first blood work on the Thursday after the chemo and the following Monday (days 7 and 11). In addition, I will take Neupogen for the low neutrophil counts, these are self injections take for 10 days after chemo starting 24 hours after chemo. The bad thing about this is that it can cause your bones to hurt - especially in younger people. This is a bit worrisome. BUT, if I don't have to worry about getting sick and going to the hospital...OK.

  • The CCAC nurse (Judy) came to see me and will arrange for a nurse to come to my house post chemo and teach me how to do the injections.

  • Nausea problems post chemo. I took the Kytril once and the Stematil once post chemo and didn't take them again because i was sick after them. Dr. Hamm said that I should have stayed on them and I likely wouldn't have had the on going nausea. So I'll do this. Also, she wrote me a scrip for Emend which I start taking one hour before chemo starts. I don't know much about this...but will soon.

  • I asked about how we know if the chemo is working or not...I will be getting a Gallium Scan and CT scan after the 4th round of chemo. I will also be getting a MUGA at this time to make sure my heart is ok. After 6 cycles I will be getting a PET scan (done in Hamilton which will likely be covered by the government by then - it currently is NOT covered and costs $3,600).

  • There is some controversy about the grading of Follicular Grade 3. The controversy is fairly complicated and surrounds whether it is Grade 3 A, B or Pure Grade 3. Dr. Hamm got the World Health Organization (WHO) pathology book out and we talked a bit about the number, type and orientation of cells in combination with my Pathology report to determine what type of Grade 3 it is...she figures that it is Grade 3 B. But not sure. She also noted that this will not change the prognosis or treatment so I shouldn't worry too much about this. Either way, I am going to proceed with sending my slides to Dr. Gascoyne at the BC Cancer Agency.

  • After the initial treatment plan (8 cycles of CHOP-R and 5 shots) I will be going on what they call Maintenance Rituximab for 2 years. Every 3 months I will receive a 90min dose of Rituxan. I have to decide whether or not I keep my Port in for that time...I should be fine with my veins...but I'll wait and see. I think there might be an issue with having the port flushed once a month - so that might be a pain in the ass.

  • Diet. Canada food guide....don't take supplements, don't take the anti-oxidants, etc etc...trying to kill my immune system to save me...
  • Nausea and Food - Dr. Hamm "Don't eat food that causes nausea" ... hahahah .... Dr. Hamm is a Ham.
  • Acupuncture - yes can do...

So this is a great, lets kick the shit out of this weak ass cancer!


I got in crap from Grandma for the 'prison picture' - so here is a 'nice good grandson pic'...



Anonymous said...

Fantastic news! I love the new pic, looks like Isabella is celebrating too! BTW a shaved head suits you... much better than the long haired v-ball days! : )

KJR said...

Wooooooooooooo Whoooooooooooooo! So so Excited and happy for you, Diletta and Isabella. Now you will absolutely be there to harrass and intimidate all of Isabella's boyfriends. Can't wait to witness that! Poor things!. Love Great Auntie Kymmy

Graham Read said...

Amazing news jeff, and your new look is actually kida suiting! kick the shit out of the weak ass cancer and add to the survival rate for others to come!

Dora and Dave said...

Awesome news on your results Jeff!!! I think your new look really brings our your eyes. You look great!!

Joanne said...

Fabulous family picture. You look great Jeff!