Comments on: It’s been a lousy week http://livingwithmcl.com/2007/08/11/this-has-been-a-lousy-week/ The ramblings of a mantle cell lymphoma survivor Mon, 21 May 2012 14:12:53 +0000 hourly 1 http://wordpress.org/?v=3.3.2 By: Marc http://livingwithmcl.com/2007/08/11/this-has-been-a-lousy-week/comment-page-1/#comment-2503 Marc Mon, 13 Aug 2007 01:40:23 +0000 http://livingwithmcl.com/index.php/2007/08/11/this-has-been-a-lousy-week/#comment-2503 <p>I know how it is. It can be very overwhelming at times, but fortunately there is a lot of information to be had, it's just a matter of being able to filter out the good from the bad information. </p><p>The most important thing, which you obviously have already discovered, is having a good doctor.<br /> </p><p>In your father's case, splenectomy's alone have proven to be <a href="http://patients.uptodate.com/abstract.asp?TR=lymphoma/20074&viewAbs=1~2~3&title=1-3" target="_blank" rel="nofollow"> very effective in producing long term remissions in certain cases</a>.<br /> </p><p>It is an extreme procedure, however, and there are other complications, including having to take antibiotics for several years (or possibly forever), and the possibility the NHL will move to the liver, which obviously isn't a good thing. </p><p>But I am surprised at the recommendation of FCR. Fludarabine is extremely immunosuppressive, and is typically used for cases of chronic lymphocytic leukemia (CLL). I am aware of others using it for NHL, but it is rare, and I believe because they have been refractory to other more conventional treatments, i.e. CHOP + Rituxan. </p><p>The real problem, which you may have discovered as well, is no matter what you choose, it's all really just a crap shoot. Unfortunately medicine isn't an exact science, and what might work for one may not work for another. </p><p>As for me, I have not had any treatment yet. Although my MCL is progressing, it is progressing slowly. Don't know how much longer I can hold out, but I am hoping for at least a few more treatment free years. </p><p>Sorry I can't be of more help, but it sounds like your father is in good hands. </p> I know how it is. It can be very overwhelming at times, but fortunately there is a lot of information to be had, it’s just a matter of being able to filter out the good from the bad information.

The most important thing, which you obviously have already discovered, is having a good doctor.

In your father’s case, splenectomy’s alone have proven to be very effective in producing long term remissions in certain cases.

It is an extreme procedure, however, and there are other complications, including having to take antibiotics for several years (or possibly forever), and the possibility the NHL will move to the liver, which obviously isn’t a good thing.

But I am surprised at the recommendation of FCR. Fludarabine is extremely immunosuppressive, and is typically used for cases of chronic lymphocytic leukemia (CLL). I am aware of others using it for NHL, but it is rare, and I believe because they have been refractory to other more conventional treatments, i.e. CHOP + Rituxan.

The real problem, which you may have discovered as well, is no matter what you choose, it’s all really just a crap shoot. Unfortunately medicine isn’t an exact science, and what might work for one may not work for another.

As for me, I have not had any treatment yet. Although my MCL is progressing, it is progressing slowly. Don’t know how much longer I can hold out, but I am hoping for at least a few more treatment free years.

Sorry I can’t be of more help, but it sounds like your father is in good hands.

]]> By: lmarsico http://livingwithmcl.com/2007/08/11/this-has-been-a-lousy-week/comment-page-1/#comment-2500 lmarsico Mon, 13 Aug 2007 00:10:37 +0000 http://livingwithmcl.com/index.php/2007/08/11/this-has-been-a-lousy-week/#comment-2500 Hello My father was recently diagnosed with MCL - well, to be exact, three weeks ago. We are all somewhat in a daze - especially me since I have been reading every article , blog, site on this disease. My dad has has NHL for 2.5 years , indolent in nature, but has since changed. He is 71 years old, has various other health issues, cardiac and renal ones. However, he is a fighter ! I found your site and well, it made me cry but also gave me inspiration to ensure that my father get the best care possible. Thank you for sharing your story, your life with all - it is extremely daunting to come down with such an illness, however it is our attitude and determination to stand out, be different and survive in whatever way we can that makes all the difference. Thank you. He is due to get a spleenectomy as his is quite enlarged. He will be treated at Hackensack, NJ by Dr. Goy, we also went to Memorial Sloan Kettering for a second opinion and was basically told the same regime of chemo would be recommended - CFR... I am overwhelmed because I feel that doctors arent in tune with patient's care at times. THe bed side manner is non existent - as if my father is a merely another statistic. This makes me extremely upset yet also empowers me to continue researching and not giving up on him just because he has cancer. One doctor told me - well, he may have 3 years - max. I was extremely taken aback by his quick comment - and well, my dad who does not know this, will not be returning to this physician. I want him to be treated by someone who wants to help him, moreson than merely giving him a shorter life span, no hope, etc. I need to go thru your entire blog and read about your specific treatment - as I am interested if you received the same chemo treatment. Have read tons about CHOP but that is not what they are recommending - any thoughts and advice would be welcomed. Once again, thank you for chronicling your life - your story - and being honest. I wish you the very best Take care Lourdes marsico Age 36, mommy, wife and daughter to a most wonderful father. Hello
My father was recently diagnosed with MCL – well, to be exact, three weeks ago. We are all somewhat in a daze – especially me since I have been reading every article , blog, site on this disease. My dad has has NHL for 2.5 years , indolent in nature, but has since changed. He is 71 years old, has various other health issues, cardiac and renal ones. However, he is a fighter !
I found your site and well, it made me cry but also gave me inspiration to ensure that my father get the best care possible.
Thank you for sharing your story, your life with all – it is extremely daunting to come down with such an illness, however it is our attitude and determination to stand out, be different and survive in whatever way we can that makes all the difference. Thank you.

He is due to get a spleenectomy as his is quite enlarged. He will be treated at Hackensack, NJ by Dr. Goy, we also went to Memorial Sloan Kettering for a second opinion and was basically told the same regime of chemo would be recommended – CFR…

I am overwhelmed because I feel that doctors arent in tune with patient’s care at times. THe bed side manner is non existent – as if my father is a merely another statistic. This makes me extremely upset yet also empowers me to continue researching and not giving up on him just because he has cancer. One doctor told me – well, he may have 3 years – max. I was extremely taken aback by his quick comment – and well, my dad who does not know this, will not be returning to this physician. I want him to be treated by someone who wants to help him, moreson than merely giving him a shorter life span, no hope, etc.

I need to go thru your entire blog and read about your specific treatment – as I am interested if you received the same chemo treatment. Have read tons about CHOP but that is not what they are recommending – any thoughts and advice would be welcomed.
Once again, thank you for chronicling your life – your story – and being honest. I wish you the very best

Take care
Lourdes marsico
Age 36, mommy, wife and daughter to a most wonderful father.

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