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Sonja51
Posts: 4
Joined: Mar 2011

Hi all,
Let me say first that I am a very private person. Keep to myself within my family and do not even have a Facebook account. Reason for stating this is how hard it is for me to reach out and share. I have not even told my friends. I don't want to be "the one with cancer". I know I will change in their eyes. I feel however that my story may help someone else out there, as I am myself searching for answers.

About six weeks ago I was told I have Mantle Cell Lymphoma. If my husband wasn't with me I might have jumped in the Hudson. I'm 56, female and have no other health issues. I got three opinions for treatment with three different recommendations. 10 years ago they misdiagnosed this cancer regularly. I suppose that's the good news, as now it has been identified there are many trials out there testing what might work. The jury is still out. Prognosis is not good tho, as it seems so far they have managed to lengthen life but not extinquish the cancer.
As a young woman I was a vegetarian hippie. Pregnant and barefoot on the beach, I juiced, made my own sprouts, lots of F & V, and enjoyed fresh fish from the sea. I remember being vibrant. I look at old photos and glow. I reckon that is the life force. Children came along, work pressures, and the western world and over the years we ate and lived like most other americans. Pizza, and beer, the odd macca's birthday party, etc. with the odd veggie thrown in.

In my heart I truly believe that the body can heal itself given the right tools. God made us perfect. Our modern life has interfered with the true balance. So here is my plan...
Onc #1 - Go in hard, aggressive, intensive in hospital chemo for 5 months followed by stem cell transplant. Start tomorrow. Maybe add 2-5 yrs to my life.
Onc #2 - Go in hard, 3 different stages of aggressive chemo, followed by SCT. It would be a tough year, with hopes of adding 5-8 yrs to my life.
Onc #3 - "You're not symptomatic. You're healthy in every other way, let's do watchful waiting, and check again in three months to see what's happening."
Then he recommended a mild treatment, which would deal with the MCL as a chronic illness. I may only go into remission for a short time ie 1-2 yrs, and then repeat the mild treatment until that no longer works.
From my reading, it seems the clock starts ticking when the chemo begins. They know the life span of someone who has this disease. What if we just don't start the clock just yet? In my heart I feel I may have had this for several years already.

Okay - I choose Door #3!!! (showing my age now!) I feel like I've been given a reprieve from the Guv'ner! Time to fight this with natural remedies and see what my body can manage on it's own.
Next Stop - Naturopath.
I did see her after Onc #1, and she put me on some strengthening potions (herbs, vitamins, supplements) in case I went with Chemo right away. I have returned to a vegan life, I juice 2x per day, I infrared sauna. This afternoon I have my second appointment to really get serious. I will keep you posted on how things go.

I would appreciate anyone's experience on natural, alternative remedies. I have been trying to dig around on the site and find tidbits here and there, particularly from Emily - 2bhealed. If you could PM me with more details of your wholesome journey, it would be MOST appreciated.
Best Health to all here.

CountryGal7557
Posts: 165
Joined: Feb 2011

Sonja, It doesn't sound like you're looking for advise other than homopathy, natural means.

I went the chemo route.

I wish you the BEST in your natural healing adventure.
Please keep us posted.

Janelle

p.s. I agree that once you tell friends/family/neighbors that you have Lymphoma, everyone does treat you differently, at first, but after you've been in remission for a while it's great to attend family get-togethers and girls night out w/o anyone asking because they take one look and SEE that you're doing good! With chemo Treanda I didn't loose my hair and did not loose alot of weight, so those who I didn't tell, never knew. and some treated me poorly, like they always have, and I didn't care because I realized they were never my friend, so why waste my time with trying to keep that friendship. hope this makes sense.

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

It's nice to meet you Sonja. It does sound like you've decided to go the natural way & I can appreciate it, but I too went the chemo way.

I was 41 (or rather turned 42 4 days after diagnosis) and the idea of treating it naturally never once went through my head for personal reasons. My mom had a mastectomy and never treated and died a year later. I was 15. I made my choice to fight this nasty beast with everything I have to give.

I have been doing this fight now for 5 years. I started out with stage 1 Lymphoplasmacytic Lymphoma/MALT. Both these are pretty rare. I was given a couple of choices. Watch and Wait (although I WAS having symptoms) Radiation only, CHOP & R (bigger guns) and CVP & R (milder guns). My first instinct was hit it with the big guns kill it and be done, but at the same time very scared about doing chemo...you know the stereo type sickness. My onc thought the CVP & R was a good choice since I was stage 1, so wanting the easier softer way I said yes. Was it hard? Yes but doable.

I did have a relapse and cannot help but wonder should I have gone for the bigger guns? It doesn't matter. We did do radiation and killed that spot for good. Have I had long term issues? Yes, but mild and very doable.

I relapsed again where it changed to Follicular Stage 3, still low grade and uncurable but treatable. Did Rituxan once a week for 4 weeks and every other month. This was by far the easiest of the treatments, no hair loss and very little side effects and did pretty good with it for a while.

Well, relapsed again this year. Still Stage 3 Follicular. Since I relapsed while on Rituxan I was referred to a treatment Center/Hospital for a stem cell transplant. I've been putting this option off for years now because frankly it scares the hell out of me, but it's time. I just finished my 2nd round of RICE chemo and go on the 16th to see if I am in remission to start the process for SCT. I start my pre-testing for SCT next week.
The transplant doc tells me that there was never a cure for Follicular lymphoma, however with all the research and work they have done, that's not necessarily true anymore. He's giving me a 50% chance of CURE. My onc told me I had a 80% chance of 5-6 year remission. That sounds wonderful to me.

So, here I am 47 years old, scared woman who's going to give this all I have to give. The transplant doc says I need it for 2 reasons....I relapsed while on a very good maint. drug and 2 my age. I won't say I am not terrified because I am, but I still don't have the faith to walk down the natural path and that's ok. We do what we feel we need to.

I don't know where you went for all the opinions, but I have heard that MD Anderson in Texas is one of the best, also Sloan Kettering, and MAYO. I wish you the very best of luck in your journey Sonja. I'm sorry I have no advise for you, but I am glad you came here.

Take care of yourself, you are your best advocate!
Beth

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

Sonja,
I would like to welcome you to this site. There are a lot of knowledgeable people here. I can respect your privacy because I to am private about a lot of things.I know very little about MCL. I was diagnosed with Follicular last May and now in remission. It is a good idea to get those 2nd and 3rd opinions. I would like to say to stay away from the web sites. They will scare the heck out of you. They are statistics only. They are really good for that,but you are not a statistic,you are an individual. I am sure you will get a lot of info from the members on here that will lead you in the right direction. Be looking forward to your future posts and have good wishes for you. John(FNHL-1-4A-5/10)

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Hi Sonja,
Welcome to our group. I know very little about MCL, but did do a little research and thought this article might make you feel more comfortable about choosing "door number 3". I hope after you have completed the "wait and watch" process you will re-post how you are doing. You can also post during your waiting period for group support...someone is always here to respond. Take care, and best wishes...Sue (FNHL-2-3A-6/10)

"Watch and wait" sometimes a viable option in mantle-cell lymphoma
FEBRUARY 20, 2009 NEW YORK (Reuters Health)

Although treatment immediately following diagnosis is common in patients with mantle-cell lymphoma (MCL), up to one-third of MCL cases may follow an indolent course, according to a retrospective analysis by U.S. researchers published online by the Journal of Clinical Oncology.

The analysis found no evidence that deferring treatment of asymptomatic patients with MCL led to any worse outcome. Remarkably, in the current study nearly half of those who did not require treatment in the first 3 months after diagnosis also did not require treatment for a least a year.

"If patients are asymptomatic, have relatively low tumor burden without current or impending organ compromise (for example, no bowel or genitourinary obstruction), and relatively normal laboratory values, we commonly will observe them for at least 3 months without treatment to monitor the pace and status of disease progression," Dr. John P. Leonard of Weill Cornell Medical College, New York, told Reuters Health.

"If the disease remains stable and non-progressive, and the patient remains asymptomatic," he added, "continued observation (with therapy deferred further) may be reasonable to consider."

The researchers noted that despite a recent trend toward aggressive early treatment of MCL, no randomized trials have shown an overall survival benefit advantage of one therapeutic approach over another.

Of 97 patients with MCL evaluated at Dr. Leonard's hospital between 1997 and 2007, 31 (32%) had been observed for more than 3 months before first receiving systemic therapy. Median time to treatment for these patients was 12 months (range 4-128 months), and the median follow-up was 55 months. There were no specific criteria for deferring initial treatment; this was at the discretion of the treating physician.

In both the delayed-treatment group and the early-treatment group, treatment was typically a CHOP-like regimen (cyclophosphamide, vincristine, doxorubicin and prednisone).

Dr. Leonard and his co-authors attribute the improved overall survival in the patients whose therapy was deferred to 2 factors. First, they tended to be younger than those who received immediate treatment, and second, they had better performance status at the time of diagnosis.

Sonja51
Posts: 4
Joined: Mar 2011

Thank you everyone for your kind welcome. There is alot of learning to be had on this site and I hope that I can make a positive contribution.
allmost60 - Thank you for that article. I had not found that article but indeed Dr Leonard is my physician and I have trust in him. If he says it's OK to wait and see what happens then that gives me time to test the Natural Route. I have not ruled out Chemo and whatever treatments he recommends when the time comes. Meanwhile tho I am changing EVERYTHING that goes in my mouth. Someone further down in the correspondence commented that it is the Fighting Spirit within us that keeps us going. I couldn't agree more. I certainly won't go down without a good fight!
I suppose by approaching this for a natural holistic point of view, I feel for the moment the illusion of having some control. Then if that fails I have medical back-up. It's a very scary ride and wish I hadn't bought the ticket but here we go...
Currently, I am on a number of supplements prescribed by my naturopath. Happy to share this info if anyone is interested. My diet consists of Juicing 2-3 times per day. I am on an infrared sauna regime - 3 hrs a day for the next six weeks. Eating at least one raw meal per day, all Vegetarian- Organic of course. Out with Coffee, sugar, meat, dairy, no alcohol (big bummer), no white anything -flour, sugar, rice etc. So Lots of Vegetables. I do eat fish once a week and eggs 2-3x.
I am fortunate to be able to take time off work and make my health my full-time job.
As the detox goes, I feel quite exhausted and am often emotional. It's a crap shoot. I have no idea what is going to happen. There are cases of remission using natural remedies as well as conventional orthodox medicine. There are cases where the cancer takes over no matter what kind of treatments one has. It is truly with the big guy. We are all individuals.
And finally I have some puppy therapy. My family bought me a Blue Heeler Pup for my birthday. He is Peaking Cuteness and makes me smile often. When he can go out he will be my personal trainer tool. That's my favorite thereapy of course.

PS - Should I be writing this stuff in my blog on this site or is this OK to write here?

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

As far as I am concerned you're fine to write here. As you can see the photo I have chosen is my 6 month old Blue Heeler Puppy Sam.

He takes ALOT of energy and lots of walking to be a good boy, but is very smart and has such a sweet personality. My hubby and a couple friends are doing the walking and trips to the park for me to wear him out (he's so much better tired) which I appreciate more than words can describe.

Just keep your options open honey. You and your doctor will know what's right for you. You will find yourself building a lifelong relationship with them so it's important to find the right balance.

Take care and good luck!
Beth

miss maggie
Posts: 929
Joined: Mar 2010

Dear Sonja,

I am sure you read my post to you not too long ago. It's amazing that I
mentioned Dr. Leonard, and he is your physician. You are in good hands.
As you very well know, he is also affiliated with one of the greatest hospitals,
Columbia Pres - Cornell Medical Center.

How wonderful your family bought you a puppy. This puppy will be the light of your life,
and I believe having this puppy will only be positive in the days and years to come.

Love Maggie

miss maggie
Posts: 929
Joined: Mar 2010

Dear Sonja,

First let me say, sorry you have to be on this site.

I read Beth's post, and was very impressed with her reply to you. I couldn't
of said it any better. I also read Sue's reply to your post. Sue did mention
Dr. Leonard. I met up Dr. Leonard at a conference in New York City. Dr. Leonard also
participates in tele-conferences, as well as practices in NYC.. I am not sure where
you live.

I can't advise the options available to you. I admire your belief in natural healing.
Please just be careful where you get your information. There are doctors out there that
treat your cancer with traditional medicine, and natural therapy. For me, I only take a multi vitamin and minerals, vitamin C, fish oil, and B6. I take separately vitamin D3 which is a very important supplement. I am afraid of herbs. Most of my diet consists of most things
organic. Especially if I do eat meat, milk, and most certainly vegetables organic. I know it's expensive. I feel I am worth it.

I have only been treated with Rituxan. You will get so much info from others that know more
than I. What I do know, I have read many posts from patients on this board that are doing
very well with MCL. Please try and stay positive. I know how hard it is when first hearing
the news. You think life in over, it's not.

One other message from me. Just be sure your oncologist is affilitated with a NCI hospital.

Prayers, and blessings your way. Love Maggie

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

Maggie,
Just wondering. Did the R knock you on your butt? It does me. John

miss maggie
Posts: 929
Joined: Mar 2010

Hi John

John, I never had a problem with Rituxan treatment. So sorry the treatments
has been a problem for you. Do you think it possible the infusion they give you
before Rituxan is not the cause? I forgot the name. The infusion to prevent allergies
from the Rituxan. That will knock you out.

Glad you're back on this board. Love Maggie

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

Maggie,
i do not recall anything except the benedryl and tylenol. Maybe there was and I can't remember. I believe Sue is down from it too. John

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

The Rituxan definetely makes me tired. I've only had 2 infusions, but my chemo nurse said many patients she has delt with complain of fatigue from it. She also said that since I get my infusion every other month, my body doesn't get a chance to be free of it for any length of time. I'm not nearly as fatigued as when I was doing the CVP-R, but I still don't have 1/2 the energy I was hoping to have by now. Late afternoon and after diner in the evening I'm like a limp noodle. It's all do-able, but I sure miss the energy I had, pre-chemo days...yawn... (0:
Love...Sue (FNHL-2-3A-6/10)

miss maggie
Posts: 929
Joined: Mar 2010

Dear John,

That's it, Benedryl for allergic reaction to Rituxan. My brain was off
last night, couldn't remember the name. I'm not surprised you are so tired
and without energy. Years ago a group of us went on a cruise. One of us got
very sea sick, and took Bendryl. Oh boy, for 2 days she was knocked out.
Just one dose.

Maybe as time goes by, the fatigue will go away. Just stay well John. If the
treatment helps, it's worth it. What do you think?

Love Maggie

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

Maggie,
The benedryl does knock you down for a day or so,but after R it seems the strenght is drained for weeks on end. John

Michele23
Posts: 167
Joined: Mar 2011

Hi Sonja,Welcome and thank you for sharing your story.I don't truly think going off those book numbers is wise.As I shouldn't still be alive.Don't know where these drs. get off saying how long you'll live.Only the man upstairs knows that so that angers me because it scares people.Don't think it's so much what we put in our bodies that counts {speaking of the herbs}.I feel it's our "fighting spirit" something deep within that comes alive.Haven't you ever heard stories of people who survived accidents etc that drs couldn't explain how they made it through.Good luck to you wish you all the best,Michele Dx95 FNHL3

CountryGal7557
Posts: 165
Joined: Feb 2011

I know a NHL 10-year survivor who was told ten years ago, she had 5 years to live!

can you believe it!

When she reached 4 years after several relapses, she was given Rituxan and has been in remission for 6 years and counting!

Janelle

miss maggie
Posts: 929
Joined: Mar 2010

Dear Janelle,

Just to mention, I finally had time to go to your site. Thank you for
posting your experiences, very helpful to me..

I was so encouraged reading your post about a 10 year survivor. Especially
after being told she had 5 years to live. The only treatment I had was Rituxan.

Is it possible to post the DX for this patient?

Thank you for all, love and blessings. Love Maggie

CountryGal7557
Posts: 165
Joined: Feb 2011

I had sent her a request to join us here a while ago, but she doesn't have her own computer, uses her son's family computer off-and-on as she is a short walk from their home.

she had the same as several of us. Follicular Indolent 4A Low Grade. we are the same age 53. DX approximately 11 years ago, so ~2000. she originally found a lump in her lower stomach. it was fairly large, can't remember the size though. I work with her son, so have met her once and have tried to keep in touch thru email. I know her first 4 1/2 years were tough, relasp several times until she was given Rituxan. 5+ years in remission for her!!! Her only complaint - fatigue. She looks fantastic.

mmmm....I think I'll call her soon, haven't talked to her in awhile.
Hugs to all!
Janelle

miss maggie
Posts: 929
Joined: Mar 2010

Dear Janelle,

Thank you for sharing the DX of your friend. I think her DX and outcome
will inspire so many on this site with the same DX. I was DX in Sept 09,
and later found out my sub type is: Extranodal marginal Zone B cell NHL.
The only treatment I received was Rituxan, once weekly for 4 weeks. I was
told I was in remission Jan 2011. I will be seeing my oncologist, Monday
May 9.

Hugs to you also. Love Maggie

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

Maggie,
Good luck on Monday with the appointment. We will be waiting to see how all goes. John(FNHL-1-4A-5/10)

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Me too Maggie,
I'll be thinking good positive thoughts for a nice clean scan on Monday. Hope you don't allow the up-coming scan to distract you from having a Happy Mothers day. Steve is down on the river fishing until Sunday evening, but my two boys, and grandkids are taking me out to brunch and a movie on Sunday for Mothers Day. Now if Lizzy decides to show up that day I'll be at the hospital, which will be just fine also! Love...Sue (FNHL-2-3a-6/10)

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Have a wonderful weekend and know that the words will be good from the ONC. Eleven years!!!The rituxan won't let it come back.

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