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  1. #41
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    I know I have chemo scheduled and will more than likely still get the treatments out of fear not to. I do not want to have any regrets. There is no such thing as stage 5 cancer.

    With that said, I have a second opinion in Nashville St Thomas Hospital on Nov 21st. Between now and then I plan to research lymphoma and whole grain plant based diets. Based on the info available to me at this time I am starting this diet. My current doc told me I needed to eat protein, no other specifics. I plan to discuss the diet I want to start further with my doc and the doc in Nashville. Since this is a slow growing type of cancer I have a little time to try to improve my health without chemo. If I have time, I am leaning toward following a plant based diet for 6 months or so and then retesting for cancer. If there is no improvement I will review my cancer treatments. I know everyone has opinions. I have heard so many cancer horror stories of people who did and did not get chemo treatments.

    Again, I do not want any regrets. I will more than likely end up doing the chemo and the whole food plant based diet at the same time out of fear that I would get worse before the food diet had a chance to reverse the damage already done. I am not interested in watch and wait. I have to take action. What those actions may be are still under discussion.
    Age 50
    Follicular Non-hodgkins lymphoma Stage 2 on 10-28-2011
    Upgraded to Low grade follicular non-hodgkins lymphoma Stage IV on 11-11-11.
    Cancer in lymph nodes found in neck, back of abdomen, between both lungs and cancer cells found in bone marrow test.
    Prescribed Treanda and Rituxan, 4 months. To start 11-28-2011.
    Remission 2-17-2012
    Rituxan treatments start 4-25-2012, once every two months for two years
    Learning as I go.

  2. #42
    Administrator Top User Didee's Avatar
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    Bank. No diet in the world will get rid of cancer.
    Of course a good diet is a must for keeping the body in the best condition possible and best done in conjunction with a dietician.
    Aussie, age 57
    1987 CIN 111. Cervix lasered, no further problems.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011.
    Scan Feb 2012 .still in remission.
    Still NED Nov 2012. On to yearly bloods now.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma. A lump in otherwords, nodule if you wish to be specific.

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  3. #43
    Administrator Top User ChemoMan's Avatar
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    Hi BW

    If you have chemo you will need to eat enough protein in particular. Fruit is also good in combating constipation which can be a side effect of Chemo. I agree with Didee that there is no diet that will get rid of your cancer.

    At stage 4 you have had this cancer for a long time without you even knowing it was there. It has spread and is now impinging on your aorta. It is time for you to seriously attack this and Chemo is the way to go. The Chemo you will be getting is safe and mild compared to the usual protocols, but by the same token it won't be a walk in the park and it carries very serious but fortunately rare side effects.

    RE diets don't do anything you read in a book or on the net. Consult a dietician and not a 'nutritionist' as the latter is not a recognized medical profession. Your hospital may have a dietician that you can use for this. Good luck in trying to maintain a diet high in veggies if you start chemo...be sure to keep a bucket handy

    Good Luck with making the decision...whatever you decide will be best for you
    Age 57
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011
    NED on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  4. #44
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    I don't know anything about the chemo he wants to use, but I am sure I will learn more as time goes by.

    Thanks for the info about getting help with my diet planning. I do not think the diet will get rid of cancer but hopefully it will aid in getting it into remission.

    My wife wants to help, she says "she does not know how to do much of anything except raise kids and cook." She wants to cook for me, but she wants to make meals that will help me, not make me sicker. So, she wants to get me off sugars, processed and fatty foods. She has tons of books on eating healthy. Long story short is that in order to keep her calm and direct her energy if she wants me to eat healthy, I guess I will go along for the ride. If I get any meats, it is gonna be fish or skinless chicken breast, baked not fried. Very little if any milk, eggs or cheese.
    Age 50
    Follicular Non-hodgkins lymphoma Stage 2 on 10-28-2011
    Upgraded to Low grade follicular non-hodgkins lymphoma Stage IV on 11-11-11.
    Cancer in lymph nodes found in neck, back of abdomen, between both lungs and cancer cells found in bone marrow test.
    Prescribed Treanda and Rituxan, 4 months. To start 11-28-2011.
    Remission 2-17-2012
    Rituxan treatments start 4-25-2012, once every two months for two years
    Learning as I go.

  5. #45
    Administrator Top User Kermica's Avatar
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    So, she wants to get me off sugars, processed and fatty foods.
    Bank, none of this can hurt, at all. One of the reasons I think I remain stable in my disease state is that this is the way I eat. Lots of chicken, fish, some pork, a bit of beef. Whole grains, fruits and veggies...they are all good. Tell your wife you are all in and to go for it.

    Cheers,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 63
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09

    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.

    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.

    Significant progression detected in PET scan - December 2012

    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.

    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.

    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".

    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.

    June 2014 - started 2 year maintenance Rituxin, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.

    Remember the Rules!

  6. #46
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    Thanks Kermica, Hard times right now. We are all just in shock and need a plan and a little hope to help us make it thru the day. Lots of tears being shed right now.
    Age 50
    Follicular Non-hodgkins lymphoma Stage 2 on 10-28-2011
    Upgraded to Low grade follicular non-hodgkins lymphoma Stage IV on 11-11-11.
    Cancer in lymph nodes found in neck, back of abdomen, between both lungs and cancer cells found in bone marrow test.
    Prescribed Treanda and Rituxan, 4 months. To start 11-28-2011.
    Remission 2-17-2012
    Rituxan treatments start 4-25-2012, once every two months for two years
    Learning as I go.

  7. #47
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    Bank, try to remain as calm as you can. The Bendamustine and Rituxan are going to work, and for all we know, you could stay progression-free for years and years. If it does come back, RIT with Bexxar or Zevalin will also be VERY viable choices for you. There are several very encouraging papers being presented at the upcoming ASH conference about RIT, and Zevalin in particular - both as front-line therapy, consolidation therapy, and salvage therapy. You are going to have many, many options in the future.

    Here is just one of the abstracts about Zevalin/RIT:

    http://ash.confex.com/ash/2011/webpr...aper37317.html

    Regarding the diet, as the others have said, a dietary change is not going to help put you into remission. The cancer agents are going to do that. You need to eat a balanced diet for sure, but you also need to eat whatever it is that you can tolerate during treatment.

    David
    David
    Age 43
    March 1, 2011 - Grade 1 Follicular Lymphoma from node removed from neck.
    2/22 PET/CT scan revealed one additional node in groin - also removed.
    Officially Grade 1 / Stage 3 due to second node.
    No Other Evidence of Disease.
    7/8 PET/CT shows two new small nodes - opposite sides, neck and groin.
    1/06/12 Completed Rituxan x 4 Monotherapy. 2/29/12 NED! Completed 4 additional maintenance doses of Rituxan. 12/12 NED! 6/14 NED!

  8. #48
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    Quote Originally Posted by davidgb View Post
    If it does come back, RIT with Bexxar or Zevalin will also be VERY viable choices for you.
    Great news to hear that. Heck, I have been thinking if it came back my next choice went straight to a bone marrow transplant. Lots of stress right now. I have just had so much bad news the last 5 weeks that we are all overwhelmed. With the chemo coming up soon I guess our next hope to hear good news is that it is in remission. But I do not know how long until that type of news will be know after the chemo is over?
    Age 50
    Follicular Non-hodgkins lymphoma Stage 2 on 10-28-2011
    Upgraded to Low grade follicular non-hodgkins lymphoma Stage IV on 11-11-11.
    Cancer in lymph nodes found in neck, back of abdomen, between both lungs and cancer cells found in bone marrow test.
    Prescribed Treanda and Rituxan, 4 months. To start 11-28-2011.
    Remission 2-17-2012
    Rituxan treatments start 4-25-2012, once every two months for two years
    Learning as I go.

  9. #49
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    Bank, of course there are many variables, but for low-grade FL an auto-SCT is usually something that would happen far down the line, and as I mentioned earlier, not necessarily for everyone. Of course your situation could be different, depending upon your prognosis, etc. All we can do is share what we have learned having come through much of what you are dealing with now. All I can really relate to is the anxiety that comes at the beginning of all this. I had a very minor diagnosis - only two, normal sized nodes, but with all of the tests, and the reading on the internet, and everything else, I was pretty messed up. But after all the dust settled, and I learned more about what this follicular lymphoma card was that I was dealt, I slowly felt better. Try to remember Chemoman's words. Do not panic. You have much to learn, if you choose to do so. There is SO MUCH research being done, dozens (hundreds) of ongoing trials, and all kinds of new treatment options coming down the pike. There is every reason to feel very optimistic about what your options are now, and what they will be years from now.
    David
    Age 43
    March 1, 2011 - Grade 1 Follicular Lymphoma from node removed from neck.
    2/22 PET/CT scan revealed one additional node in groin - also removed.
    Officially Grade 1 / Stage 3 due to second node.
    No Other Evidence of Disease.
    7/8 PET/CT shows two new small nodes - opposite sides, neck and groin.
    1/06/12 Completed Rituxan x 4 Monotherapy. 2/29/12 NED! Completed 4 additional maintenance doses of Rituxan. 12/12 NED! 6/14 NED!

  10. #50
    Administrator Top User ChemoMan's Avatar
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    Hi BW

    You are going to be around for quite sometime so stop thinking about what ifs. Put all thoughts of relapse and what will be done if treatment fails totally out of your mind. You cross that bridge only when you come to it. Tell your family and friends not to worry as you are going to be around for quite a while Say it to yourself and believe it as it is the most likely outcome for you.

    You may or may not be aware of what we call 'Noise' It originates in the panic center of your brain and it will drive you crazy unless you can develop strategies to counteract it. What you have just experienced is the noise in it's full glory at full volume, so now it's time to develop those strategies to help cope. One of them is not to dwell on the future and deal with the present. Another one is keeping your fears to yourself. No need in geeing up the loved ones, they are freaked out enough. Another way of coping is someone to sound off too and that is where we come in handy

    You know what you have now and at this stage Knowledge is power. A few of the regulars have posted some sites for you to visit and I encourage you to do this. Learn as much as you can about FL and make sure you are concentrating on real science . Below are some webcasts for you to look at, together with the links posted they should serve you well and give you plenty to digest and distract

    Whenever you need help in asking questions don't hesitate to ask. If you need to vent also don't hesitate after all that's what we are here for.

    Read the rules

    Cheers
    Age 57
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011
    NED on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  11. #51
    Administrator Top User ChemoMan's Avatar
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    Age 57
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011
    NED on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  12. #52
    Senior User
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    Symptoms appear to be getting worse. Dizziness, nausea, fatique and confusion seem to be gaining ground on me each day. Not real sure how long it will before I am no longer able to perform my job. Today I had an emergency and I was able to handle it without any blood or tears but I still felt like I was not 100%. I fell like my bucket has a hole in it. A little bit of me drains out everyday. It is kinda like jet lag or the day after an all night party, but without the tequila after taste.

    I keep saying I need a good nights sleep. This morning my alarm went off for 20 minutes before I heard it. Normally I hear it as soon as it goes off. Kinda afraid to tell the doctors about it because I fear they may delay my chemo and I'll never get it.
    Age 50
    Follicular Non-hodgkins lymphoma Stage 2 on 10-28-2011
    Upgraded to Low grade follicular non-hodgkins lymphoma Stage IV on 11-11-11.
    Cancer in lymph nodes found in neck, back of abdomen, between both lungs and cancer cells found in bone marrow test.
    Prescribed Treanda and Rituxan, 4 months. To start 11-28-2011.
    Remission 2-17-2012
    Rituxan treatments start 4-25-2012, once every two months for two years
    Learning as I go.

  13. #53
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    Man I know you will be relieved to start treatment. Won't be long, so hang in there.

    David
    David
    Age 43
    March 1, 2011 - Grade 1 Follicular Lymphoma from node removed from neck.
    2/22 PET/CT scan revealed one additional node in groin - also removed.
    Officially Grade 1 / Stage 3 due to second node.
    No Other Evidence of Disease.
    7/8 PET/CT shows two new small nodes - opposite sides, neck and groin.
    1/06/12 Completed Rituxan x 4 Monotherapy. 2/29/12 NED! Completed 4 additional maintenance doses of Rituxan. 12/12 NED! 6/14 NED!

  14. #54
    Administrator Top User Kermica's Avatar
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    Bank, tell your doctors everything that is going on with you at this point. I don't see why it would delay treatment but it is information they need to know in order to make sure that everything is taken into consideration to ensure your well being while having treatment and getting well.

    Good health,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 63
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09

    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.

    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.

    Significant progression detected in PET scan - December 2012

    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.

    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.

    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".

    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.

    June 2014 - started 2 year maintenance Rituxin, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.

    Remember the Rules!

  15. #55
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    Feeling much better today. Went home so tired yesterday that I ate supper and went straight to bed. Aside from a night filled with crazy dreams I feel much improved. I think I have been staying up too late and getting up too early. I must need more rest. In the past If I got 3-4 hours of sleep I was good to go. Last night it took 10 to get the same amount of recovery.
    Age 50
    Follicular Non-hodgkins lymphoma Stage 2 on 10-28-2011
    Upgraded to Low grade follicular non-hodgkins lymphoma Stage IV on 11-11-11.
    Cancer in lymph nodes found in neck, back of abdomen, between both lungs and cancer cells found in bone marrow test.
    Prescribed Treanda and Rituxan, 4 months. To start 11-28-2011.
    Remission 2-17-2012
    Rituxan treatments start 4-25-2012, once every two months for two years
    Learning as I go.

  16. #56
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    Meeting with the Oncologist for my second opinion tomorrow. I guess my reasoning in getting a second is because I don't want to have any regrets down the road.
    I am a little worried that he will make me feel even worse about my staging and overall cancer condition.
    Last edited by Bank Walker; 11-20-2011 at 09:28 PM.
    Age 50
    Follicular Non-hodgkins lymphoma Stage 2 on 10-28-2011
    Upgraded to Low grade follicular non-hodgkins lymphoma Stage IV on 11-11-11.
    Cancer in lymph nodes found in neck, back of abdomen, between both lungs and cancer cells found in bone marrow test.
    Prescribed Treanda and Rituxan, 4 months. To start 11-28-2011.
    Remission 2-17-2012
    Rituxan treatments start 4-25-2012, once every two months for two years
    Learning as I go.

  17. #57
    Senior User
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    Bank

    I certainly understand your consternation with your diagnosis, I was where you are 6 months ago, freaked out and depressed. It was suggested that I go see a counselor, I resisted because
    of pride or probably stupidiity, but I went and it REALLY HELPED get thru all of this. Now I go once a month
    Chicago 54 years old
    LPL/Waldenstroms indolent nhl, dix Friday the 13th 5/13/11
    R-CVP, 5/23/11 6 cycles, 12/20/11 PR, w&w for now

  18. #58
    Administrator Top User Kermica's Avatar
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    Bank, a second opinion is one of the smartest things a lymphoma patient can do for themselves. For example, I was originally staged at S4, went to Sloane in NYC for a second opinion and walked out Stage 1. I am now Stage 3 (seeing my onc today, in fact) but the second opinion, in my case, bought me over three years (and counting) chemo free.

    No matter what, it is worth the time for exactly the reasons you are doing it. Since you are already sitting at S4, he can only confirm what you already know (or provide good news) so you have nothing to lose and possibly something to gain by having this consultation. Good luck with it.

    Good health,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 63
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09

    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.

    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.

    Significant progression detected in PET scan - December 2012

    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.

    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.

    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".

    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.

    June 2014 - started 2 year maintenance Rituxin, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.

    Remember the Rules!

  19. #59
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    Second opinion went really well. We covered all my questions. He had talked to several other doctors about my staging and the chemo options he would recommend, based on my age and where the cancer is located. The meds were the same as the ones my current oncologist suggested. Without knowing what the first doc wanted to use. We talked about diet, steroids, my bood samples, CT scans, bone marrow test and PET scans, ect.

    I then asked "why are you an oncologist"? It was kinda enlighting to me about oncologist and why they do what they do. Long story short was that the people with cancer that are getting treatments want to live. They are fighting to live and he wanted to try and help them. When he started new meds were just coming on the market and it was an exciting time for the field.
    Age 50
    Follicular Non-hodgkins lymphoma Stage 2 on 10-28-2011
    Upgraded to Low grade follicular non-hodgkins lymphoma Stage IV on 11-11-11.
    Cancer in lymph nodes found in neck, back of abdomen, between both lungs and cancer cells found in bone marrow test.
    Prescribed Treanda and Rituxan, 4 months. To start 11-28-2011.
    Remission 2-17-2012
    Rituxan treatments start 4-25-2012, once every two months for two years
    Learning as I go.

  20. #60
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    Hi, I just found this site today and saw your posts. I was dx'ed with fNHL S4 on March 23rd, 2011 and was given Treanda and Rituxan twice a week for 4 months. I am currently in remission so I just wanted to tell you that although I can greatly understand your fears and what you are going through, there is HOPE ) You will beat this as I did. As for the chemo you will be taking, everyone responds differently but I got through it and I'm a complete wimp. My doc and nurses even tried to get me to shave my hair off before starting so losing it wouldnt be so shocking once I started treatment but I refused and I'm glad I did! I still have my hair, my mind is a different matter, lol!
    I wish I had known about this site while I was going through my treatments but now that I have found it I can at least help others and maybe get some help myself. I will have to go back for maintenance Rituxan and scans every 3 months. My last round of chemo was in September but I'm starting to feel better already. You can do this with the support of your wife, family, friends and this site!
    Please feel free to ask me any question here or email me. That offer is open to anyone ) I know there are more experienced people on this forum that can better answer questions you may have but I don't mind sharing my journey too.
    I wish everyone a Happy,Safe & Well Thanksgiving!
    Steffany

 
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