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lboehlke's picture
lboehlke
Posts: 17
Joined: Apr 2012

This is my first post. I joined the website in April 2012; So I figured it was time to share my story. I have read many posts and want to thank everyone here. Many of my questions have already been answered.

I'm now 49, and I was diagnosed with Stage III Mantle Cell Lymphoma in early February 2012.

January 26, 2012, I had my gall bladder removed because it was only working at 1% and giving me stomach problems. (I also had an umbilical hernia repaired). When the surgeon removed the gall bladder, she also removed an enlarged lymph node near my gall bladder. Everything was biopsied and the pathology reports indicated possible lymphoma. I went to see an Oncologist, he ordered several tests. First, removal of another lymph node (in my neck) and a cat scan. They showed that it was a non-Hodgkin’s lymphoma called mantle cell. More tests were ordered—a bone marrow test (Which Sucked Big Time) and PET scan. The bone marrow test revealed 2-3% lymphoma and the PET scan showed nothing more. Meanwhile, I’m non-symptomatic and I feel fine (Actually great since I had the Gall Bladder removed). My Oncologist concluded that the cancer is probably indolent (slow growing) and not aggressive (quick growing). So, at this point there will be no treatment. This is called watchful-waiting and My Oncologist will see me every 3 months unless I start having symptoms such as lumps, bumps, excessive night sweating, fever, weight loss, or pain. My Oncologist also spoke of getting a second opinion out-of-town. My cancer center (NYOH) has a relationship with Dana Farber in Boston. I decided that it would be a good idea to go there and my wife agreed. The Oncologist at Dana Farber concurred with My Oncologist, so we are watching it.

Up until this point my wife (a 5 year breast cancer survivor herself) & I have been handling this quite well. I go back to my Ongologist June 26th for my 3 month follow up. Now I'm starting to get a little worried about the results. I just keep hoping and praying that he tells me to come back in another 3 months. I still am not having any symptoms so I keep hoping for the best.

Lance

po18guy
Posts: 237
Joined: Nov 2011

Hello. You have the blessing of an indolent form of mantle cell lymphoma, which gives you the precious commodity of time. It seems like you have partaken of some of the best care available. An oncologist who recommends a second opinion is (at least) a very good doctor who is giving you excellent advice. Second opinions save lives, and mine is a good example. I also have a rare non-Hodgkin's lymphoma (Peripheral T-Cell Lymphoma - Not Otherwise Specified). A little boring background: mine was aggressive and there was no time to wait prior to treatment, as it was widespread disease with 50+ nodes that had become tumors, as well as bone marrow involvement. With aggressive T-cell lymphomas, the first chemo regimen must be effective or survival chances drop considerably. For a little perspective, my first prognosis was poor. I relapsed immediately after four months of fairly intensive chemo (CHOEP + GND). This lowered my prognosis to 'very poor". I was not well enough to endure another chemo regimen, and at the time, there was nothing else to treat it with. I was scheduled for one 24 hour infusion of ICE as salvage therapy, followed by best wishes and palliative care. :-(

As to my point, at that exact time, a clinical trial of an experimental drug opened up. I entered the trial and went into remission once again. So, when all hope seemed to be lost, a miracle appeared. I would not read too much on the web about survival statistics, as you are your own statistic. You are setting your own curve and how others fare with mantle cell does not affect you in the least. Breakthroughs and refinements in treatment are appearing at a fairly regular rate, so hope is definitely on the rise. I have lived well past expectations, considering the amount and type of disease I had. My case is being monitored due to the success of the treatment. Between NYOH and Dana Farber, you should be treated excellently. It does require some adjustment to accept living with cancer, but millions are doing just fine. Doctor will treat it when it becomes a problem, and treatment options are expanding as we speak. As well, you are on the young side of the age range for mantle cell, which is also a good sign.

Funny how we look at life with a new perspective after diagnosis. It has become a blessing in my case, as I now enjoy the life that had been slipping through my fingers unnoticed before all of this began.

lboehlke's picture
lboehlke
Posts: 17
Joined: Apr 2012

Thanks for the reply. Yes it is funning how I do look at life differently now. But I'm not changing the way I do things. It is business as usual for now.

allmost60's picture
allmost60
Posts: 3151
Joined: Jul 2010

Hi Lance,
I will keep you in my prayers that your doctor will say.."see ya in 3 month's"!!! Stay positive and enjoy every day! Best wishes...Sue (FNHL-2-3A-6/10)

lboehlke's picture
lboehlke
Posts: 17
Joined: Apr 2012

Thanks Sue for your thoughts and prayers. I do hope to hear those few words in a couple weeks. Staying positive is my top priority these days, it definitly does help.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Lance,
We all get that "What If" feeling about this time. We will keep you in our thoughts. John

lboehlke's picture
lboehlke
Posts: 17
Joined: Apr 2012

Thanks John for your thoughts and prayers.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1008
Joined: May 2012

Iboe,

Welcome to our little circle of friends. There may be more than one form of mantle, but from what I have read (and from a friend having it), it is most commonly fairly aggressive. I WOULD go get a second opinion. Various blood tests and metabolic profiles are also very helpful in assessing how fast a cancer is moving.

One of the defining symptoms of lymphoma is fatigue. Itching can be another symptom, caused by the release of histimines into the blood.

I would get that second opinion. I hope that your doc is correct, and that your cancer is slow-moving and easily treated.

max

lboehlke's picture
lboehlke
Posts: 17
Joined: Apr 2012

Thanks Max,

I actually did get a second opinion and the Doc agrees with my Doc. June 26th (only 2 weeks away) I go back for my first 3 month checkup. I expect a CT scan to see if it has advanced or not. I hope and pray it hasn't. If it does not change then I will go back in another 3 months. If it has changed at all, then we start to treat it. At this point I'm trying not to think about it, but I also can't stop thinking about it. I'm still not having any symtoms and feel great, I keep thanking God for getting my gall bladder out, or I wouldn't even know I have cancer.

Lance

jimwins's picture
jimwins
Posts: 1977
Joined: Aug 2011

Hi Lance,

The anxiety is a proverbial "witch". If you haven't already discussed with your doctor,
maybe they can give you something to help with anxiety. I know it really took
the edge off for me.

I truly hope you get good results from your scan coming up 6/26. Please take heart
that lymphoma is generally very treatable and there are lots of success stories here :).

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)

lboehlke's picture
lboehlke
Posts: 17
Joined: Apr 2012

Thanks Jim,

I have been handleing the anxiety very well, I think. At least I'm trying not to think about it. My Oncologist did give something to help me sleep when I need them. I just keep thanking God I got my gall bladder out, or I wouldn't even be here today. I would have no clue I had Mantle Cell Lymphoma.
When I went to Boston for my 2nd opinion the Oncologist not only discussed treatment with me, he even mentioned curing it. Talk about getting excited, I had hope to be able to treat this sucker and not have to worry for years, but it my even be better than that.

Again thanks for the hugs & thoughts.

Lance

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Hi Lance, waiting is the worst part, everyone here has or is still going through the same experience, it is so hard not to think about it, but you can't let it rule your life. Sending you positive thoughts...... Vinny

lboehlke's picture
lboehlke
Posts: 17
Joined: Apr 2012

Thanks Vinny

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1008
Joined: May 2012

Iboe,

I did a little research and discovered for myself that occasionally mantle can be indolent or slow-moving. I am glad that yours is indolent.

I was diagnosed with a very different, rare form of HL (constitutes less than 1% of all lymphomas), which is always indolent. But, I was Stage III, and had very widespread disease. The first doctors who looked at my CTs were not oncologists, and acted as if my chances were very dismal. As more news came in (biopsy results, etc.) I learned that my prognosis was much better than originally thought (I had no organ involvement, for instance). Yet, even at Stage III, I never had ANY SYMPTOMS, except fatigue, and I never had any "B" symptoms at any time. In fact, a week before my biopsy, my family MD felt my armpit for nodes, and could find none. A week later, the biopshy node from my armpit was "the size of a golf ball."

From these experiences, I have learned to attribute very little to whether a person is having symptoms or not. I hope your condition remains non-eventful, and that treatment (if required) is light and effective.

max

lboehlke's picture
lboehlke
Posts: 17
Joined: Apr 2012

Thanks Max,

I have also been diagnosed at Stage 3 Mantle Cell Lymphoma, this means I have enlarged lymph nodes above and bellow the diaphrgam, and I'm still not having any symptoms either. If down the road I do need treatment, I was told it will be heavy Chemo followed by Stem Cell Transplant. I do not look forward to that but I did hear the word "Cure" when I was in Boston at Dana-Farber so I'm excited about that. I just hope next week my Ongologist says "See you in 3 months"

Lance

JAM-Man
Posts: 3
Joined: Apr 2011

Hi, if you are looking for a support group for Mantle Cell Lymphoma (and one just for CareTakers/Loved Ones) we have two groups you may be interested in joining. Both groups are on Facebook, and require a Facebook account, but they are both closed groups - so no one that isn't a member of the groups will be able to see what is posted . If you are interested please contact me at MantleCellLymphomaGroups@gmail.com. -Rachel :)

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