5/22/14
– I had my 3 week check-up today and all is GREAT!!! All my counts are right
where they need to be and I continue to feel good. I hit another great
milestone today. I no longer need to take Prograf and Magnesium plus Protein. Many
of my restrictions can now be removed. I actually have been given the OK to have
a beer. I am not a big drinker but I must say I am looking forward to enjoying
a cold beer. The
one thing that seems to be a big concern is exposure to the sun. As a precaution I apply sun block each day
before I head off to work.
Also
today I received my first immunization shot. It was the pneumococcal vaccination.
I guess it is kind of like getting a flu shot. It was really no big deal.
I
met with Dr. Rowley today. I think he was truly surprised on how well I am
doing.
Next
on my "things to do" is to get my periodic PET scan, which is scheduled for June
16th with me getting the results on June 20th.
my God, my rock, in whom I take refuge, my shield, and the horn of
my salvation, my stronghold and my refuge, my savior; you save me from
violence. I call upon the LORD, who is
worthy to be praised, and I am saved from my enemies.
2Samuel 22:3-4
More to come…
10 comments:
Hello Rich. First, congrats on your good news! Second, I really have enjoyed reading your blog. I was diagnosed with MCL on March 9th of this year. My name is Ross Hoyt and I am a 44 year old father of two from Cypress, TX. I am currently doing the HYPER C-VAD regimen at MD Anderson in Houston. I just completed round 3 of this treatment. Your blog has given me a lot of hope that I can survive this rare form of lymphoma. I wlll continue to monitor your progress and will draw strength from your positive outlook.
Hi Ross, I am so sorry to hear about your MCL diagnosis. I just know that you will come out of your treatments with flying colors. I know it is hard to look step back and look at what life will be for you in a few months, but you will be feeling great and living life as you always have. The only difference will be that you will be able to say that you beat cancer. Back in 2008 when I was first diagnosed, it was only a short time later that I was able to join my daughter as a chaperon at cheerleading nationals. We had a great time and it is a trip I will always remember. You too will be able to do something special with your wife and kids once you are in full remission. I will keep you in my prayers. Best wishes to you and your family.
Rich
Great news Rich. - saw the piccie with the beer as well - well deserved!
Ross - I too was treated with HyperCVAD - I also wrote a blog (having also found Rich's blog)and you may find it of interest - www.hairymel.blogspot.com (I think Rich has the link on his page also). Check it out if you like. There is also a private facebook group for MCL patients and their supporters - contact us if you would like to join. Good luck and best wishes
Alan (Brisbane Australia)
Rich and Alan, thank you so much for the correspondence, it means a lot . Alan, I will check out the group on Facebook. I am starting round 4 on Tuesday, so I'm feeling pretty good, at the end of the 21 day cycle. Took a while for my platelets to come around this time, but they tell me they are the last to bounce back. I'm hoping I tolerate this regimen this time...last time I got a GI tract infection and had to be hospitalized because of it. Thanks again guys and best wishes to you as we'll.
Hey Alan, Thanks for offering your words of wisdom to Ross. Maybe someday we will meet and enjoy a Foster’s together.
Rich
Hi Ross, You will do great with round 4. Sure there are time we run into some obstacles like infections but we always manage to get through. From where I am sitting it sure looks like you are doing very well and have an excellent attitude. Keep it up, my friend, and you will be back to living a normal life in no time.
Rich
Hi Rich, finding your blog last night was an answer to prayer. I recently relapsed with Mcl. hyper Cvad and asct in 2012. Will find out tomorrow what the plan is but they are talking allo. Have read all the terrifying studies and know this is really in God's hands. But last night I needed to read your successful story. Thank you! I am praying I do as well as you. I know faith and a good attitude go along way.
Janet Kohler
Janet, I am so sorry to hear about your relapse. I am glad that my blog has showed you that the road ahead is very passable. Having faith, being positive and, of course, listening to your doctors will get you through this. Unfortunately much of what you read on the internet is pretty negative and full of horrible stories. The truth is that medical science has come so far and we are so lucky to live in the times that we do. I just know you will do great and get passed this relapse. I will certainly keep you in my prayers. Best wishes with hearing about your treatment plan. Rich
Rich, I have a question about the therapy choice after relapse. Was radiation an option for you? My reoccurrence is localized so that is the recommendation. I am impressed by ibrutinib as it has less complications. Just curious why they chose it for you since it does take longer to get the cancer in check.
Thanks,
Janet
Hi Janet,
I was not presented an option of radiation. The reasoning behind me choosing my treatment methods for both the first time and for my relapse was centered on research opportunities. Both times I opted to go with a study versus a proven treatment. Why would I do this? Well for one thing, I have a lot of trust in my doctor. Secondly, I felt that I really wanted to help with how future patients would be treated. While I am being treated, why not try and help others. Sure, there was risk with this approach but it has certainly paid off for me. I started on a study drug called Ibrutinib in March of 2013 and was in full remission by October of that same year. Although there may have been faster methods to achieve remission, with the Ibrutinib route I was able to continue a very normal life. I really experienced no side effects to speak of.
Now, it is important to point out that with the first time I was diagnosed I felt very sick and needed to aggressively treat my disease so that I would get some relief very quickly. That was why we went with the Hyper CVad with Velcade study. With my relapse, I never felt sick. I guess because I was scanned often, the MCL was caught very early and it never had a chance to cause me discomfort. Saying this, taking a pill that may not provide immediate results was not a concern to me. My treatment did not have the urgency that it did with my first time.
I am not a doctor and I am not qualified to give you medical advice but I would think you should look at your circumstances and make a decision on what is best for you.
I hope this is helpful. Please feel free to contact me anytime.
Rich
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