Vince's Journey

After several attemps, I finally received treatment #5 today. I was supposed to do it two weeks ago but Dr. Leming wanted to do a PET scan before we moved ahead. I was scheduled to do the treatment last Monday but the results of the PET scan were not ready so it was pushed back to Wednesday. Then on Wednesday my white blood cell count was too low so I was back on the Neupogen for a few days. This morning, my counts were well above the minimum and the treatment went off without a hitch - still it was a 6 hour day. Now I'll be on the shots for the next week and revisit Dr. Leming next Wednesday. I think the key to finishing the treatments on schedule will be making sure I get the shots for 3 or 4 days leading up to a Monday treatment. Hopefully we'll be able to stay on track from now on.

Thanks to everyone for your prayers, comments, concerns, etc. It was awesome to get the great news on the PET scan last week and I appreciate everyone's excitement. Now we need to stay on track and finish the job!

A very frustrating day took quite turn today around dinner time this afternoon. As I mentioned in my previous post, Dr. Leming said he would try to call as soon as he found out any news about my PET scan. The call came a little after 5 PM. Dr. Leming said that my PET scan was 'boring'. I asked what that meant and he read some things in medical terms that made little sense to me. I asked if he could tell me the same thing in language I could understand and he said, "The PET scan shows no noticeable activity, it appears you're on your way to remission." Jeanne and Steve Bruce were here (they served us a phenomenal steak dinner) when I received the news and the three of us just stood around with tears in our eyes and big smiles on our faces. Julie had gone to pick up Abbey so I had to wait a few minutes to break the news to her....needless to say there were many more tears and some the greatests hugs I've ever been a part of. Breaking the news to the kids was also a beautiful experience.

So we're heading in the right direction! We'll stay on the same track and hopefully complete the chemo treatments by the end of June. We realize there is still some work to do but at least we now know the treatments are doing the job. Now we have to keep those blood counts up.

Dealing with this has been such a mental game. We've done a pretty good job of putting on the brave faces but after the frustration of our appointment earlier today, we needed some good news. We got it this afternoon! Thanks to EVERYONE for your love, support and friendship. Thanks for caring and thanks for being there for us. Keep the prayers coming, we're making tremendous progress! Peace and blessings!!!

Vince, Julie, Judd, Aaron and Abbey

When you go into a day and the best possible scenario is you'll get a 5 hour chemo treatment, obviously you're not destined to have one of your better days.

I had a PET scan this morning and then headed to Dr. Leming's office where we hoped to get good results and a fifth chemo treatment. Unfortunately the visit turned out to be the latest in a recent series of frustrating visits. Dr. Leming indicated the PET scan results would not be ready until late tomorrow or early Wednesday and without knowing the results, its best to wait on the treatment. At this point I think our emotions got the best of us. This past week has been very stressful...you build yourself up for the doctor visits and when all you do is spin your wheels, it gets frustrating. Dr. Leming did say we're reading too much into the PET scan but that doesn't make it any easier to sit around and wait for the results. He also said he would do his best to push for the results sooner.

So, hopefully we'll get a treatment by Wednesday. I know I'm ready to move ahead. Thanks to everyone for your support, love and prayers. Keep the prayers coming! Please lift up a special prayer for Julie, she's been so strong and supportive throughout this journey and today I think she needed a little time to release some frustration. She has been my 'rock' and I don't know where I'd be without her. Also, say a special prayer for our kids. They, too, have been extremely strong for me and they are the ones driving me to get better. I just want to be there for them for many years to come. Nothing means more to me than they do.

Thanks again to everyone. Thanks to Beth Achberger for the meal she made for us last Monday...great pasta shells and an awesome dessert. Thanks to Gordie Massa for putting together my 'Dream Dinner'...the Vince Fontaine calzones were great! Thanks to Steve Bruce for bringing us dinner today (not sure what it is but I'm sure it will be phenomenal) and replenishing my stock of Bud Select. I'll continue to keep you posted. Hope everyone had a wonderful Easter...PEACE!

Yesterday I posted about my appontment with Dr. Leming and the results of the latest CT scans. The scans showed that there while the masses in my chest were gone, therer were still signs of masses in my abdomen. Dr. Leming speculated that the masses could simply be scar tissue left from the malinancies. He said that this happens quite frequently in the larger tumors. I went back and looked at the previous scans and the enlarged nodes in my abdomen were somewhat larger than the nodes in my chest and neck. And at the risk of sounding like George Costanza, there was 'significant shrinkage' in those nodes following the first two cycles of chemo. There was not much additional shrinkage following the 3rd and 4th cycles.

I looked all over the internet to find information to support what Dr. Leming was saying but I obviously did not put the correct words into the search. Julie's sister Jeanne also did some searching and came up with the following...

http://www.lymphoma.org.uk/support/Factfiles/PETadiagnosticimagingtechnique.htm


A relatively common problem where FDG PET scanning is being increasingly used is in those patients who, after a course of chemotherapy, are found to have some reduction in the size of a lymphoma swelling but it does not go away completely. It is then often difficult to be sure whether this contains active lymphoma, which would result in that patient’s relapse and need for further treatment. Frequently, the residual lump simply reflects scar tissue from the disturbed architecture of the original lymph glands, needing no further treatment and which, given time, will slowly shrink back. Clinical experience suggests that FDG PET can, with a high degree of accuracy, determine between residual masses containing viable tumour where further treatment will be required to achieve a cure and those which no longer have active lymphoma within them and where additional and unnecessary side-effects from treatment can be avoided. FDG PET alone is rarely of value and should be used in conjunction with the clinical history, examination and information from blood tests and other scans.

So this obviously is something that happens quite a bit. We're praying that this will be the case with me, as well.

Just thought this might be of interest to all of you!

Peace and Blessings!

Vince

Well my scheduled treatment for today never materialized. I had my appointment with Dr. Leming and he reviewed the results of my recent CT scan. The test revealed that the effected lymph nodes in my chest have all returned to normal...this was great news! He went on to say that the lymph nodes in my abdomen are still showing up and that they have not reduced much since the previous scans...obviously not so great news. He went on to explain that it is very possible that the nodes in my abdomen are now simply revealing scar tissue...he said with larger tumors many times they never reduce back to the normal size. I even asked him how often this happens and he said 'all the time.' So to make sure, we'll have a PET scan this week to determine if there is still malignancies in the abdominal lymph nodes. He postponed the treatment until next week because you can't do a PET scan when you've recently had chemo and you're on Prednisone.

Should the PET scan reveal little or no malignancy, we'll most likely continue the CHOP chemotherapy treatments for another couple months. I was hoping we'd only do 6 but we may end up doing 8. But that would be good news because it means everything is gone or close to being gone. Should the scan reveal that the tumors are still actively malignant (and lets pray that they aren't!!!!!) he said we'll probably reevaluate our treatment path and probably due a form of stem cell therapy. I don't even want to think about that being an option at this point. I'll have the PET scan later this week and will revisit Dr. Leming next Monday.

So we have another anxious week ahead of us. On the plus side, we know the chest area appears clean. He said I had larger tumors in my abdomen and there definitely would be some scaring of the lymph nodes. Lets all pray that that is what the CT scans are showing. As I told Julie, it would seem odd that the chemo would eliminate the malignancies in the neck and chest and not the abdomen. Another plus is that my white counts were fine...no Neupogen shots this week! So (absent the anxiety!) I should have a fairly easy week.

We'll continue to keep you updated. I would doubt I'll know anything until next Monday so don't worry if there is nothing new posted...it simply means there is nothing new to report. As soon as we know something, we'll get it on the blog.

Have a wonderful Easter week! The kids are looking forward to having a few days off from school. Thanks to everyone for your support and friendship!

Peaca and Love to all,
Vince

Hello everyone. Just thought I'd post an update about what has transpired since I had the scans done last week.

First, we haven't learned the results of the scans. My next scheduled treatment and visit with Dr. Leming is on Monday (April 10) so I'm sure we'll find out how everything looks at that time. We'll be sure to post what we learn as soon as we can.

As I mentioned last week, I was off the Neupogen and went in to have the blood checked last Friday. At that time the white counts were as low as they've ever been, 1.5, so it was back on the Neupogen. I had injections for 5 straight days and yesterday, the white count was all the way up to 23! So, I'm off the Neupogen again and just hoping (and praying!) that the counts will stay high enough to receive my treatment on Monday. Dr. Leming said (and my history supports this) that they will definitely drop but is optomistic that I'll stay within the range needed for treatment. I guess we'll see. One thing I didn't realize is I have to be off the Neupogen a couple days prior to a treatment because they don't want the white blood counts to be artificially boosted at the time of the treatment.

Other than that, its been an uneventful week. The boys' sports seasons are in full swing so we've been running around to games. I'll probably post again next Monday night or Tuesday.

I want to thank everyone for keeping updated via this blog site. I went to lunch today with a good friend through Xavier, Roger Grein, and I was touched that his assistant, Joyce, checks the site. She asked how my tests went last week and has been following my progress through the blog. That really means a lot to me. I know there are many of you doing the same.

Hope to see all of you soon!

Vince