What to expect post-reatment- Rituxan/Bendamustine

Just found this board and I'm so excited for the oppotunity to interact with other cancer patients/survivors. I was diagnosed in April 2016 with Follicular large B cell Non Hodgkins Lymphoma.  It was found by accident during an MRI for hip pain I was having. The cancer is in the bone marrow of my hip and shoulder, but not in any of my lymph nodes or organs, etc.  I am being treated at MSKCC with a combination of Rituxan and Bendamustine for 6 treatments once a month for 6 months.  I've had 3 so far.  My experience is that the 3-5 days after treatment are the worst, but then I gradually start to feel 'normal' again. I am so fortunate that I will not lose my hair, but it has fallen out much much more than normal. I have lost a decent amount of weight, have gone into menopause, and am very fatigued. All in all I  can not complain.

I would love to find someone who is going through or has gone through the same treatment and who can share experiences with me. FYI I am a happily married 49 year old mother of 3.  I would love to know what to expect after treatment and to ask what changes you have made to your life since experiencing all this. I want to know everything from how you changed your eating or excerise habits to less important things like do you get your hair colored or did you go grey. 

I try to stay positive as much as possible, but of course sometimes its hard to do so. I pray that all of us have many many happy and healthy years ahead and I thank all of you in advance for your support!

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Comments

  • bcbmassco
    bcbmassco Member Posts: 1
    2 treatments of Rituxan/Benamustine

    I have nhl IIIA, my first treatment was 4 years ago.  R-chop for 6 months and 2 years of Rituxan.  I went about a year in remission.  I found out in May that it returned, but only a 3cm area in my chest.  The first tumor was 1/3 of my abdomen.  I started Rituxan/Benamustine in June.  I just received my 2nd treatment last week.  So far, the main side effect was from the Nuelasta.  I get the shot on Saturday and by Sunday I'm feeling some lower back pain.  I manage it with some Advil.  Monday I'm a little tired but by Tuesday, feeling back to normal.  The nuelasta  is working because I'm not seeing any major drops in blood counts.  Actually wbc and hbc are elevated.  

    I'm a 64 year old active male.  I am still working 50 plus hours a week, golf on the weekends and riding my motorcycle.  I feel blessed in many ways, especially that I'm not having the major side effects that some have to go thru.  My wife worry's more than she should, but knows that the only thing coming out of my mouth is "I feel great".  So far, no change in hair and other than the 2or 3 days after treatment I do feel great.

    Mentally, is a challenge.  Living our lives from test to test, can some times be hard.  i think that's why I stay so busy.  I do my best to focus on living.  

  • KarenSMZL
    KarenSMZL Member Posts: 16
    edited July 2016 #3
    3 treatments of Rituxan/Bendamustine

    I have only been diagnosed since May so we are pretty neck and neck.  I feel the worst on day 3-5 after treatment as well, and then feel really good the rest of the month.  I did not know how fatigued I was prior to treatment and I am experiencing an increase in energy so I take long walks with my daughters and sometimes the grandchildren.  I am 54 and have 4 grown children and 4 beautiful grandkids.  I didn't even think about whether or not I should get my hair colored and I have to admit that I have.  I have always eaten a pretty healthy diet but the one thing I have changed is to decrease the red meat in my diet. I have been lucky enough to not need Neulasta yet, but my sister in law told me that Claritin really helps with bone pain.  I also saw that MD Anderson actually is doing a clinical trial to see if it works.  I agree that the mental part of all this is the hardest.  Trying to stay positive and not get mired down in the "what ifs" of the future is hard.  I try to love a little more, laugh a little more, and savor life a little more, and to remember to thank God for every day I have. 

  • littlemac
    littlemac Member Posts: 22
    I am a little further along in the process..I understand

    Hi.  I am a 48 year old mother of 2.  I was diagnosed with NHL in 2014.  I went through 4 rounds of chemo with Bendamustine and Rituxan.  Since then, I have received Rituxan every 2 months for a year and am now receiving it every 3 months for the next year.  The combination treatments were the hardest.  I did well through the first 2 treatments, but the next 2 were tougher.  Still...if I understand things, it is much easier than other treatments. My lymphoma was found in a routine mammogram.  They found enlarged lymph nodes in my armpits and things went from there. I had it in my lymph nodes and bone marrow. I also had fatigue about 5 days after those intial treatments.  But... I was still able to function and live my life.  I did need to slow down a bit, but I worked and still was able to make it through my daily routines.  I am hoping you find what I have found...your energy will return and "normal" will return.  There are things I have experienced- being off balance somewhat, being emotional, and having issues with short term memory.  But in time, it is all improving.

     I have continued to get my hair highlighted, I feel better when I look better.  I too have read about links, but many are not supported by evidence (just speculation).  I went through everything I did and tried to find out why- no answers.  I have given up Diet Coke and tried to eat better.  Now I am also in menopause and am dealing with those fun realites.  I had to stop reading about things, some of the info will drive you crazy.  I spent too many hours on the internet trying to figure out "why" and "how".  Now I realize that I trust my doctor and try to get my information from him.

    I am still learning and making positive changes.  But, I also know that there are no magic answers.  We are young to be diagnosed with this disease- I expect to be living with it and monitoring it for the next 20 years.  Yes- this disease will most likely continue, change and rear it's head again.  But treatments and understanding of this disease continue to evolve.  I truely feel lucky to have been diagnosed with it now, it can be approached as a disease that can be monitored and maintained.  Different from you- I have gained weight.  I had some issues with tight achilles and then menopause and have gained weight.  My plan in the near fure is to begin to put myself first:  exercise, sleep more eat better...

    For now, I hold my family closer and am trying to keep a positive outlook. God Bless!

     

  • NailsJHS
    NailsJHS Member Posts: 13
    edited July 2016 #5
    littlemac said:

    I am a little further along in the process..I understand

    Hi.  I am a 48 year old mother of 2.  I was diagnosed with NHL in 2014.  I went through 4 rounds of chemo with Bendamustine and Rituxan.  Since then, I have received Rituxan every 2 months for a year and am now receiving it every 3 months for the next year.  The combination treatments were the hardest.  I did well through the first 2 treatments, but the next 2 were tougher.  Still...if I understand things, it is much easier than other treatments. My lymphoma was found in a routine mammogram.  They found enlarged lymph nodes in my armpits and things went from there. I had it in my lymph nodes and bone marrow. I also had fatigue about 5 days after those intial treatments.  But... I was still able to function and live my life.  I did need to slow down a bit, but I worked and still was able to make it through my daily routines.  I am hoping you find what I have found...your energy will return and "normal" will return.  There are things I have experienced- being off balance somewhat, being emotional, and having issues with short term memory.  But in time, it is all improving.

     I have continued to get my hair highlighted, I feel better when I look better.  I too have read about links, but many are not supported by evidence (just speculation).  I went through everything I did and tried to find out why- no answers.  I have given up Diet Coke and tried to eat better.  Now I am also in menopause and am dealing with those fun realites.  I had to stop reading about things, some of the info will drive you crazy.  I spent too many hours on the internet trying to figure out "why" and "how".  Now I realize that I trust my doctor and try to get my information from him.

    I am still learning and making positive changes.  But, I also know that there are no magic answers.  We are young to be diagnosed with this disease- I expect to be living with it and monitoring it for the next 20 years.  Yes- this disease will most likely continue, change and rear it's head again.  But treatments and understanding of this disease continue to evolve.  I truely feel lucky to have been diagnosed with it now, it can be approached as a disease that can be monitored and maintained.  Different from you- I have gained weight.  I had some issues with tight achilles and then menopause and have gained weight.  My plan in the near fure is to begin to put myself first:  exercise, sleep more eat better...

    For now, I hold my family closer and am trying to keep a positive outlook. God Bless!

     

    Thanks for the reply! It's

    Thanks for the reply! It's just so nice to "talk" with someone going through the exact same cancer and the exact same treatments (well pretty darn close!).First, I am so happy to hear that you're doing well 2 years out and that things have normalized somewhat.  I'm curious as to why I have 6 treatments and you only had 4. Also, I was told I wouldnt have to take anything after my 6 treatments unless the cancer returns.  The more I hear and read the more I realize how incredibly individually-specific each cancer is. Anyway, as you did...I will do whatever my doctors at Memorial Sloan Kettering tell me to do!

    I have a bunch of random questions/comments for you:

    • Re the hair coloring...UGH I don't know what to do with this one. I, like you, feel that the studies aren't conclusive, but I do truly believe I got this disease because of 'chemicals'.  I am currently using a rinse which basically covers the grays a little and washes out with each shampoo.  My nurse recommended this to me. This won't work long term but I'm going to try and stick with it until my treatments are done.  My question is, did you research or discuss with your stylist any highlighting or coloring that is better for us in someway? 
    • Did you switch to any organic or healthier shampoos/conditioners, soaps, etc? I haven't done that yet but will look into doing so soon.  I am creating my own toothpaste with baking soda, water, salt, and peppermint drops. I highly recommend it as my teeth never felt cleaner or looked whiter! I also just found a totally natural deoderant that really works great. LMK if you want info on either. 
    • As for food, I've completely cut out white sugar and otherwise am just trying to eat healthier. I am a pretty healthy eater as is, but making slightly better choices daily is my goal.  During treatment I kinda eat whatever I can stomach just because I want to retain my weight ,but afterward I will be stricter with myself. Although I can not wait to have a glass of wine!
    • I also plan to exercise more.  Right now I just walk a few miles several days a week if I am not too fatigued.  Once the kids are back at school I hope to do this everyday. I also want to learn how to meditate. I'm not good at sitting still so this will be a challenge. 
    • During treatment did you avoid germy places? I've been trying to lay low since my white blood cells are done due to the treatments and so far it's worked.  During my good week (the week before a treatment) I usually go out a bit more, but otherwise I've been trying hard not to expose myself. 
    • Did you loose some hair during treatment? I know I am incredibly lucky not to be losing all my hair, but I am losing a lot of it after each shampoo. Just wondering if you also experienced this and if it stopped after treatment.
    • Finally....my allergies have been terrible!  This summer has been very hot and rainy so outdoor molds which is what I'm allergic too have been very high.  They are telling me that since my immune system is compromised my body is having trouble fighting the allergies. They are letting me take Zyrtec which helps but not completely. Did you experience this at all?

    I'm sure there are a million other questions I could ask you but that's all I can think of for now. Hope you don't mind the lengthy reply!  All the best to you!

  • PBL
    PBL Member Posts: 333 Member
    Hi. First of all, I apologize

    Hi. First of all, I apologize for being beside the initial point. Although I was very much interested in getting Bendamustine as I had read that the side effects were much milder - and particularly regarding alopecia - my hematologist said "No, you're getting R-CHOP". I am being treated in France, and it seems it's not the done thing in these parts. They save Bendamustine for second-line treatment.

    What made me decide to jump in (and this is my very first time!) is that you and I seem to have the exact same type of lymphoma. As it is a bit of a rarity, I did not have much hope of finding someone with primary bone follicular lymphoma and had figured that it wasn't worthwhile to start a thread on that particular topic.

    I was wondering if you would be interested in discussing this particular point and what it means in terms of symptoms, treatment and evolution.

    I am a 53-year-old mother of one. I too have a fairly recent diagnosis (February 2016). I am now through my six courses of chemo and will shortly begin the post-chemo Rituxan (every other month for two years).

    Hoping to hear from you soon.

  • OO7
    OO7 Member Posts: 281
    edited July 2016 #7
    Not sure I can help

    Hello, sorry you're here.  I too was diagnosis at 47, I have two children but unlike you I only did Rituxin.  Not a good comparison and everyone is different although I hope I can offer something...

    I had a mass in my breast which was missed for ten years.  When I had a mass in my jaw, that got the attention of the Doctors.  My closest friends are oncologists hematologist , one is my doctor now.  He sent me to Dana Farber because of our relationship (too close, family close) there I choose to do Rituxan only.  What shocked my friends was ME getting cancer.  I was always the healthy one.  Organic, gym rat, health nut, clean my house with vinegar etc....

    After my first two treatment I noticed nothing.  I did loose tons of hair but that was due to stress.  My father was diagnosis three weeks after I was.  I never told my family.  Hense the hair loss.  I have tons so it went unnoticed.  I did start biotin and seemed to help.  I gave up coloring my hair for a year.  I got to the point where I said the heck with that!!!  I tried organic color or should I say shoe polish because that's what it looked like.  Chemical are bad.  Call me Miss Sassy pants, I treated the cancer so hoping it gives me some kind of pass....  I should say I'm a former International Model and far more vain than I should be and a tad mad.  I don't gel my nails, drink Diet Coke anymore.  

    I'm two years since diagnosis and treatment.  Stress played a difficult role for me.  Losing my father and not having my family there was tricky.  Hiding it was/is hell.  I just lost my grandmother, seven months after my dad.  Right around the time I started to color my hair again. We're all different, have different stories.  What's important is you do whats right for you.  I'm a health nut, I feel better when I am.  When I eat horribly, I feel the difference or worse.  Do what works for you, do what you can but listen to your body.  Be good to yourself and give yourself a pass.

     

    I'm texting this on my phone and see all sorts of typo's sorry!

     

    The cumulative effects from the treatment were harder but quietly gaining ground.

         * As for my eating habits and what changed, I started juicing more and making smoothies.  I felt and still feel    better when I do.   I have been a vegetarian most of my life so it was easy for me. I don't like water so I needed something to hydrate me.  I have a nutritionist who is incredibly knowledgeable and works with my oncology group.  I don't do supplements which she does promote. I choose to get my vitamins from food.

         *  I used to workout all the time.  Mentally I had some hurdles to overcome because I'm not as strong as I once was.  this road did change my energy and strength but I'm active, workout off and on and I feel better when I do.

    Blessings and good luck!

  • lindary
    lindary Member Posts: 711 Member
    FNHL

    I was told I had follicular non-hodgkins lyphoma in Dec 2104. This was a surprise since cancer is not common in my familly. Plus I am one of those people that is seldom sick. A cold lasted a day and I never got a flu shot.

    It was not in my bone marrow but was affecting my thyroid, caused a tuomor in my abdomen and pleurisy in my rt lung. The tumor is how the cancer was found. Because of the situation my oncologist (and the second opinion oncologist) decided to treat it as aggressive. So I had 6 cycles of R-Chop. When it was found that the tumor had shrunk but the cancer was still there I did 3 cycles of RICE. 

    Lost my hair about 2 weeks after the first cycle of R-Chop and statred using baby shampoo for my scalp. (Stil using it even though my hair is now growing back.) Made water my main source of liquids. I've known a few people who, like 007, are vegetarians and germ-phobic but they still got cancer. I didn't get change my eating habits more than avoiding things that tasted terrible. for year now I if I have a soda it is with regular sugar, none of the other sweatners. I am not a big vegetable or fruit eater. With my husband's help, twice a day I had one of the 6 fruits I do eat. Veggies, he made vegetable soup a lot. (I can't stand the smell of it for almost a year now.)  I also kept up a schedule that included work & church along with the treatments. I did avoid shopping and only saw the grandkids about 2 days before the next treatment (when the white counts would be the highest). 

    I've been to several town halls on blood cancers. The speakers have been leading oncologist from unversity hospitals in the Chgo area. One of the things they agree on is that when it comes to blood cancers there is no known cause. There is a lot of info at the Lyphoma and Lyphoma/Leukemia sites. 

     

  • NailsJHS
    NailsJHS Member Posts: 13
    edited August 2016 #9
    PBL said:

    Hi. First of all, I apologize

    Hi. First of all, I apologize for being beside the initial point. Although I was very much interested in getting Bendamustine as I had read that the side effects were much milder - and particularly regarding alopecia - my hematologist said "No, you're getting R-CHOP". I am being treated in France, and it seems it's not the done thing in these parts. They save Bendamustine for second-line treatment.

    What made me decide to jump in (and this is my very first time!) is that you and I seem to have the exact same type of lymphoma. As it is a bit of a rarity, I did not have much hope of finding someone with primary bone follicular lymphoma and had figured that it wasn't worthwhile to start a thread on that particular topic.

    I was wondering if you would be interested in discussing this particular point and what it means in terms of symptoms, treatment and evolution.

    I am a 53-year-old mother of one. I too have a fairly recent diagnosis (February 2016). I am now through my six courses of chemo and will shortly begin the post-chemo Rituxan (every other month for two years).

    Hoping to hear from you soon.

    To PBL

    Hello and thanks for the note!  I'm happy to discuss our specific type of lymphoma, etc. with you.  To clarify...I was told that I having the cancer ONLY in my bone marrow in two locations is very rare ie. only occurs in NHL about 2% of the time.  The majority of the time lymph nodes are effected before bone marrow. I told my doctor that I've always been an overachiever 

    As for treatment, the first doctor I went to wanted to do R-CHOP. My understanding was that when you are staging NHL if it is in your bone marrow it is stage 3/4 but that's because by then (at least in98% of the cases) it has moved there from lymph nodes.  So even though this was NOT the case with me, this doc saw bone marrow and said let's treat as stage 3/4 i.e  with R-CHOP.  

    Since I live in the NYC area I went for a second opinion to Memorial Sloan Kettering which is supposedly the best in the world in terms of cancer treatment.  At MSK I saw the head of the Lymphoma unit. He discussed my exact case with the entire Lymphoma team. Since I am unique in that it is only in my bone marrow AND because the latest/greatest treatment is Rituxan/Bendamustine....that is what they recommended for me.  It is a slightly gentler chemo and I am trusting them that it is all I will need to beat this thing!  I should also note that I am otherwise very health and had completely normal blood work during all of this...not sure what that is worth, but thought I should mention it. 

    Thursday I get my fourth treatment and I will ask then what my post treatment course will be. As I recall I will only need something if the cancer returns, but I am not 100% sure of this.  I don't believe I have to get anything every other month like you.  I will post after talking with them on Thursday to confirm this.  It does worry me that our treatments are so different, but even though our cases are similar there are always individual differences in the person and the cancer that I suppose make the doctors treat the way they do.  I am incredibly blessed that I live close enough to Memorial Sloan Kettering to get my treatment there.

    PBL...wishing you only the best going forward! Please let me know if you have any other questions/comments. Happy to discuss further with you. 

     

  • PBL
    PBL Member Posts: 333 Member
    NailsJHS said:

    To PBL

    Hello and thanks for the note!  I'm happy to discuss our specific type of lymphoma, etc. with you.  To clarify...I was told that I having the cancer ONLY in my bone marrow in two locations is very rare ie. only occurs in NHL about 2% of the time.  The majority of the time lymph nodes are effected before bone marrow. I told my doctor that I've always been an overachiever 

    As for treatment, the first doctor I went to wanted to do R-CHOP. My understanding was that when you are staging NHL if it is in your bone marrow it is stage 3/4 but that's because by then (at least in98% of the cases) it has moved there from lymph nodes.  So even though this was NOT the case with me, this doc saw bone marrow and said let's treat as stage 3/4 i.e  with R-CHOP.  

    Since I live in the NYC area I went for a second opinion to Memorial Sloan Kettering which is supposedly the best in the world in terms of cancer treatment.  At MSK I saw the head of the Lymphoma unit. He discussed my exact case with the entire Lymphoma team. Since I am unique in that it is only in my bone marrow AND because the latest/greatest treatment is Rituxan/Bendamustine....that is what they recommended for me.  It is a slightly gentler chemo and I am trusting them that it is all I will need to beat this thing!  I should also note that I am otherwise very health and had completely normal blood work during all of this...not sure what that is worth, but thought I should mention it. 

    Thursday I get my fourth treatment and I will ask then what my post treatment course will be. As I recall I will only need something if the cancer returns, but I am not 100% sure of this.  I don't believe I have to get anything every other month like you.  I will post after talking with them on Thursday to confirm this.  It does worry me that our treatments are so different, but even though our cases are similar there are always individual differences in the person and the cancer that I suppose make the doctors treat the way they do.  I am incredibly blessed that I live close enough to Memorial Sloan Kettering to get my treatment there.

    PBL...wishing you only the best going forward! Please let me know if you have any other questions/comments. Happy to discuss further with you. 

     

    Hello NailsJHS, and thank you

    Hello NailsJHS, and thank you for your reply.

    Here is an outline of my journey:

    Like you, I had cancer only in my bone marrow. Never a swollen lymph node, not a sign that anything was amiss in my blood tests. As the rhumatologist told me, "we see one like that maybe once a year".

    I had been periodically complaining of lower back and left hip pain - which had caused me to give up walking - for several years, and my family doctor had sent me for x-rays of my lower back and pelvis several times. They never saw anything on those. Then last spring (2015) the pain increased still, and by end of June I was really limping and having burning sensations in my pelvis, shooting down into my left thigh. The x-rays ordered by my doc at Easter showed nothing of any interest as usual, but the pain made me pay him a weekly visit, so he finally ordered an MRI, expecting to find a pinched nerve. The MRI was set for end of August, and I spent most of that summer on opiate painkillers and cortisone.

    Instead of a pinched nerve, the radiologist found a compound fracture and very low signal in all of the left half of my pelvis, which prompted her to do a whole-body scan immediately in search of a primary source of cancer, which she didn't find - and that meant that she wasn't looking at metastatic cancer. She strongly advised me to seek a rhumatologist's advice, and, long story short, three bone biopsies and six months later, I found myself in the hematologist's office with a diagnosis of primary bone follicular lymphoma.

    Now, after six courses of R-CHOP, I am sorry to report that I am still not feeling fabulous... Of course, I know that all that bone isn't going to grow back to normal overnight, but I suspect that if all was well, I would somehow experience some significant change.

    I am seeing the hematologist tomorrow for the results of my post-chemo MRI and PET scan. Mid-treatment MRI was the same as pre-treatment, and the PET scan showed that the beast was weakened, but not dead, with a Deauville score at 4. We'll see what the final result looks like.

    Hope all goes well with you. Keep in touch.

     

     

  • PBL
    PBL Member Posts: 333 Member
    PBL said:

    Hello NailsJHS, and thank you

    Hello NailsJHS, and thank you for your reply.

    Here is an outline of my journey:

    Like you, I had cancer only in my bone marrow. Never a swollen lymph node, not a sign that anything was amiss in my blood tests. As the rhumatologist told me, "we see one like that maybe once a year".

    I had been periodically complaining of lower back and left hip pain - which had caused me to give up walking - for several years, and my family doctor had sent me for x-rays of my lower back and pelvis several times. They never saw anything on those. Then last spring (2015) the pain increased still, and by end of June I was really limping and having burning sensations in my pelvis, shooting down into my left thigh. The x-rays ordered by my doc at Easter showed nothing of any interest as usual, but the pain made me pay him a weekly visit, so he finally ordered an MRI, expecting to find a pinched nerve. The MRI was set for end of August, and I spent most of that summer on opiate painkillers and cortisone.

    Instead of a pinched nerve, the radiologist found a compound fracture and very low signal in all of the left half of my pelvis, which prompted her to do a whole-body scan immediately in search of a primary source of cancer, which she didn't find - and that meant that she wasn't looking at metastatic cancer. She strongly advised me to seek a rhumatologist's advice, and, long story short, three bone biopsies and six months later, I found myself in the hematologist's office with a diagnosis of primary bone follicular lymphoma.

    Now, after six courses of R-CHOP, I am sorry to report that I am still not feeling fabulous... Of course, I know that all that bone isn't going to grow back to normal overnight, but I suspect that if all was well, I would somehow experience some significant change.

    I am seeing the hematologist tomorrow for the results of my post-chemo MRI and PET scan. Mid-treatment MRI was the same as pre-treatment, and the PET scan showed that the beast was weakened, but not dead, with a Deauville score at 4. We'll see what the final result looks like.

    Hope all goes well with you. Keep in touch.

     

     

    "Complete metabolic response"

    Hello NailsJHS,

    I saw the hematologist on Wednesday, and the results of my PET scan now indicate a Deauville score of 3, which is considered a complete metabolic response, meaning that I have achieved a remission. The MRI shows some slight reduction in the extent of the bone lesions. The neurologic damage should subside over the next few months now that the chemo treatment is over. Regarding the pain and discomfort that I still have, the doc said that they cannot guarantee that I will not have some permanent pain. I certainly hope not...

    If I understood you right, you were having your fourth treatment this week - are you scheduled for some mid-treatment imaging? I must say I am curious to know if your doctors opted for the same tests as mine.

    Hope everything is well with you.

  • NailsJHS
    NailsJHS Member Posts: 13
    edited August 2016 #12
    PBL said:

    "Complete metabolic response"

    Hello NailsJHS,

    I saw the hematologist on Wednesday, and the results of my PET scan now indicate a Deauville score of 3, which is considered a complete metabolic response, meaning that I have achieved a remission. The MRI shows some slight reduction in the extent of the bone lesions. The neurologic damage should subside over the next few months now that the chemo treatment is over. Regarding the pain and discomfort that I still have, the doc said that they cannot guarantee that I will not have some permanent pain. I certainly hope not...

    If I understood you right, you were having your fourth treatment this week - are you scheduled for some mid-treatment imaging? I must say I am curious to know if your doctors opted for the same tests as mine.

    Hope everything is well with you.

    YEAH FOR YOUR "Complete Metabolic Response"

    Hello PBL, 

    So sorry for my tardy reply.  I sometimes have to avoid the boards for my own piece of mind.

    First...CONGRATULATIONS to you on your remission. I am so so very happy for you. I hope the pain that remains, if any, is tolerable for you. 

    Anyway, I  had my PET scan yesterday and will find out on Thursday if the cancer has...spread, remained the same, diminished, or vanished completely. I am obvisoulsy praying for one of the latter two.  I will certainly let you know when I hear. 

    What did they say were your next steps? Any meds going forward? When is next follow up PET scan scheduled in 6 months or so? Any info you can share is helpful. 

    On Thursday, after I meet with my Doctor and find out my results of PET I am scheduled for my 5th of 6 chemo/immunotherapy treatment.  Then my 6th will be at the end of September.  She told me last apmt that I'd have no meds or any follow up other than a PET scan sometime next year. I'm assuming that is subject to change depending on the results of yesterdays PET. 

    I will continue to pray for you! 

  • PN1982
    PN1982 Member Posts: 11
    Hi

    Sorry for asking but how did you go with RICE? Did you have any bad side effects? And how was the result?

    Sorry for too many questions as my husband has same cancer, same size of tumour (about rock melon size) in his stomach cavity. He got 2 cycles of RCHOP but did not work. Now he's having Bendanmustine. His oncologist said if Bendanmustine still doesn't work this time, they will let him try RICE.

    Thanks 

  • lindary
    lindary Member Posts: 711 Member
    RICE

    The ICE part is 3 drugs, 1 of which is given over 3 days and is usually used as a prep for Stem Cell. I had 3 cycles of RICE.

    ICE is named after the initials of the drugs used:

    Some people may also have a drug called rituximab with their ICE chemotherapy. This treatment is called R-ICE chemotherapy.

    The info is from this site:

    http://www.macmillan.org.uk/cancerinformation/cancertreatment/treatmenttypes/chemotherapy/combinationregimen/icer-ice.aspx

     

    The one thing I recommend is to take 3 - 4 walks a day while getting the drugs. I didn't and sitting/laying around so much left me kind of weak. I did have the regular loss of appetite but I am not sure if that was the drugs, loss of taste or the hospital food (very bland).  It really knocked the blood counts down. I had Neulasta the day after the RICE. After the second cycle and at the time of the third cycle I also needed several blood transfusions. for a few days after the treatment my thinking was fuzzy and I just told them at work it was chemo brain.  Hope this helps.

     

  • PN1982
    PN1982 Member Posts: 11
    edited September 2016 #15
    Thanks for your info Lindary

    Thanks for your info Lindary

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    lindary said:

    RICE

    The ICE part is 3 drugs, 1 of which is given over 3 days and is usually used as a prep for Stem Cell. I had 3 cycles of RICE.

    ICE is named after the initials of the drugs used:

    Some people may also have a drug called rituximab with their ICE chemotherapy. This treatment is called R-ICE chemotherapy.

    The info is from this site:

    http://www.macmillan.org.uk/cancerinformation/cancertreatment/treatmenttypes/chemotherapy/combinationregimen/icer-ice.aspx

     

    The one thing I recommend is to take 3 - 4 walks a day while getting the drugs. I didn't and sitting/laying around so much left me kind of weak. I did have the regular loss of appetite but I am not sure if that was the drugs, loss of taste or the hospital food (very bland).  It really knocked the blood counts down. I had Neulasta the day after the RICE. After the second cycle and at the time of the third cycle I also needed several blood transfusions. for a few days after the treatment my thinking was fuzzy and I just told them at work it was chemo brain.  Hope this helps.

     

    Salvage

    Linda, I once asked my hematologist what second-line therapy for me would be if I ever relapsed, and he told me most likely ICE with following SCT.  I am not certain that would be what I would agree to, but I appreciated the information.  Ergo, I have read a bit about ICE, and I know that it is profoundly harsh for most. It is impressive that you were active during that time.

    max

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    edited September 2016 #17
    lindary said:

    FNHL

    I was told I had follicular non-hodgkins lyphoma in Dec 2104. This was a surprise since cancer is not common in my familly. Plus I am one of those people that is seldom sick. A cold lasted a day and I never got a flu shot.

    It was not in my bone marrow but was affecting my thyroid, caused a tuomor in my abdomen and pleurisy in my rt lung. The tumor is how the cancer was found. Because of the situation my oncologist (and the second opinion oncologist) decided to treat it as aggressive. So I had 6 cycles of R-Chop. When it was found that the tumor had shrunk but the cancer was still there I did 3 cycles of RICE. 

    Lost my hair about 2 weeks after the first cycle of R-Chop and statred using baby shampoo for my scalp. (Stil using it even though my hair is now growing back.) Made water my main source of liquids. I've known a few people who, like 007, are vegetarians and germ-phobic but they still got cancer. I didn't get change my eating habits more than avoiding things that tasted terrible. for year now I if I have a soda it is with regular sugar, none of the other sweatners. I am not a big vegetable or fruit eater. With my husband's help, twice a day I had one of the 6 fruits I do eat. Veggies, he made vegetable soup a lot. (I can't stand the smell of it for almost a year now.)  I also kept up a schedule that included work & church along with the treatments. I did avoid shopping and only saw the grandkids about 2 days before the next treatment (when the white counts would be the highest). 

    I've been to several town halls on blood cancers. The speakers have been leading oncologist from unversity hospitals in the Chgo area. One of the things they agree on is that when it comes to blood cancers there is no known cause. There is a lot of info at the Lyphoma and Lyphoma/Leukemia sites. 

     

    Interesting

    Linda, I enjoyed this account of your journey, especially the nutritional parts. 

    I have walked away from advanced HL and prostate cancers on a reasonably healthy diet (like Southerners, I eat greens, collards, turnips a lot, and lots of green tea and coffee), supplemented with intensive weekend beer therapy.   Not sure what was most effective, but the Pabst Blue Ribbon was definitely the most effective regarding attitude.  I asked my hematologist, who is of Irish descent, one day, "How much alcohol is too much?"  He replied: "The traditional Irish doctor's response is 'No more than your doctor drinks' ."

    I got my seven-year lymphoma labs back at the cancer center this week -- all results essentially perfect.  I give thanks, and pray for those still in active battles. Neither I nor any other of the lucky ones "earned" this blessing, just as nothing anyone did has got others still fighting. 

    My mother was one of nine siblings.  Her sister, now 84, is the only one still living. She had two major heart surgeries last week to install a defib, after complications.  She smoked about five packs of cigarettes a day for nearly 50 years, and has never had a lung issue, and is coming home this weekend.  Consider George Burns, almost never seen without a  cigar, and lived to be 100.    I have never smoked a cigarette in my life, but have fibrosis and asthma.  I have trouble breathing if I smell a cigarette in the distance, and earnestly recommend against anyone smoking; the point is that people just don't know what makes them well or sick, in most cases.

    max

  • Sal0101
    Sal0101 Member Posts: 136 Member
    edited September 2016 #18
    PN1982 said:

    Hi

    Sorry for asking but how did you go with RICE? Did you have any bad side effects? And how was the result?

    Sorry for too many questions as my husband has same cancer, same size of tumour (about rock melon size) in his stomach cavity. He got 2 cycles of RCHOP but did not work. Now he's having Bendanmustine. His oncologist said if Bendanmustine still doesn't work this time, they will let him try RICE.

    Thanks 

    RICE

    I finished my 3rd round of R-ICE last Thursday in preparation of a stem cell transplant.  I had one infection that landed me in the hospital after my 2nd one for a few days.  Never did find out what caused it.  I've had 2 pints of blood, one yesterday and they are anticipating one more on Tuesday.  Not to tired yet.  Daily neupogen started last Saturday.  I actually feel pretty good today!! My recent PET showed that the  RICE worked and "IF all goes well" stem cell collection should be next week sometime.  

  • PBL
    PBL Member Posts: 333 Member
    NailsJHS said:

    YEAH FOR YOUR "Complete Metabolic Response"

    Hello PBL, 

    So sorry for my tardy reply.  I sometimes have to avoid the boards for my own piece of mind.

    First...CONGRATULATIONS to you on your remission. I am so so very happy for you. I hope the pain that remains, if any, is tolerable for you. 

    Anyway, I  had my PET scan yesterday and will find out on Thursday if the cancer has...spread, remained the same, diminished, or vanished completely. I am obvisoulsy praying for one of the latter two.  I will certainly let you know when I hear. 

    What did they say were your next steps? Any meds going forward? When is next follow up PET scan scheduled in 6 months or so? Any info you can share is helpful. 

    On Thursday, after I meet with my Doctor and find out my results of PET I am scheduled for my 5th of 6 chemo/immunotherapy treatment.  Then my 6th will be at the end of September.  She told me last apmt that I'd have no meds or any follow up other than a PET scan sometime next year. I'm assuming that is subject to change depending on the results of yesterdays PET. 

    I will continue to pray for you! 

    Post-chemo follow-up etc.

    Hello again NailsJHS,

    Thanks for your kind words. I can relate to your need to preserve your peace of mind - although I researched quite a lot on lymphoma, treatments, etc., I didn't even consider posting on forums until the very end of my treatment...

    You must have had your results by now. I hope your prayers have been heard and that the news is good.

    As for me, I had the first of my consolidation Rituxan treatments mid-August; the second will be in October, and so on every eight weeks for two years. I see the hematologist every time I'm in hospital for treatment.

    With respect to follow-up, she told me that I would be having a CT scan in a year, which surprised me a little - but then the initial plan to monitor my treatment had been MRIs, and that was completed with PET scans when the MRI proved to be useless in showing any change in my bone lesions... At any rate, from what I've read it is more likely for relapse to be detected through the patient coming back with a new symptom than through systematic imaging, so I guess there's no point worrying about that.

    My lashes and eyebrows started growing back shortly after the end of chemotherapy, so that I now look like a normal person with an extremely short haircut. The hair is still very fine, not really like my "usual" hair, but at least it covers all of my scalp (and a lot sooner than I'd been given to expect), so I won't complain. I guess I will some day find that it is back to normal. In the meantime, I no longer need to wear a scarf, which is pleasant enough. The first layer was all white, but the black is gradually coming out. I was gray before all this and had never used any dye, so even though the shade is paler now, it's not much of a shock.

    Taste and smell are more or less back to normal now, and I am working on cutting back on sugar and reverting to my usual staple of mostly vegetables, fruit and fish.

    I lost quite a bit of weight over the past year, and the treatment itself hit me pretty hard, so Doctor's orders are now to regain some muscle strength through gentle and relaxing activity such as yoga, Pilates, and swimming. So I went swimming (didn't do much actually...), came out of the water limping, and took a week to recover. This week I'll try a special yoga class through the hospital to see if that's any better. I am going out pretty much every day and making some slow progress, but at this point I find that I've reached my limit without any form of advance notice, and then I'm in pain and limping hard again, so I imagine the road to recovery will still be quite long.

    Looking forward to reading your next message, and hoping to rejoice over some good news!

  • lindary
    lindary Member Posts: 711 Member

    Salvage

    Linda, I once asked my hematologist what second-line therapy for me would be if I ever relapsed, and he told me most likely ICE with following SCT.  I am not certain that would be what I would agree to, but I appreciated the information.  Ergo, I have read a bit about ICE, and I know that it is profoundly harsh for most. It is impressive that you were active during that time.

    max

    Activity

    I do not consider myself an active person. I work in IT and in today's world I never need to leave my desk except for lunch & bathroom breaks. Even meetings can be attended online. So to get my version of exercise I do not park near the building (or store when I go shopping). It was a challenge to do that after a chemo treatment but I pushed myself. Sometimes I did end up parking closer. 

    RICE was a lot harder on the system. It knocked my blood cells down a lot. Neulasta helped the white cells. Red cells hovered around the lower level but eventually I needed a few transfusions. Platlets would drop real low but be back to an acceptable level just before the next treatement. The last RICE treatment was at the beginning of Oct and I was still weak mid-December. When we did the stem cell collection it knocked my platlets down a lot. By the third day they were so low that the Dr stopped the process. 

    The last time I saw the Stem Cell Dr I asked her if we should consider trying to collect more stem cells, just in case. Keep in mind I had already completed Rchop & Rice. Three days of stem cell collection only gathered less than 1/3 of the required amount. I figured if my cancer came back we would then be looking at a stem cell transplant again. Her response was that if it came back there are several new treatments in trial plus others being tested. She felt in such a situation they would go with one of the newer treatments. By this point I had 3 PET/CT scans and bone marrow biopsies. All were clear. 

    I have come to accept that treatments have had a long term effect on my body. I am trying to get to a healthier level before the 2 years of Rituxan is over. I am not making dratic changes to my lifestyle or diet. I know if I did I wouldn't stick to it long. So I more fruits and veggies but I still have meat. I have gotten so in the habit of drinking water that I have it with most meals. 

    As my Stem Cell doctor said at our last meeting - "Go out an enjoy life.". I can follow that kind of instruction easily. 

  • Slowery
    Slowery Member Posts: 4
    Post Treatment

    I just finished my treatment early last month. The last two were the worst, a lot of nausea and fever, but I also had a UTI and upper respiratory trace infection at the same time. After my family dr. gave me an antibiotic I felt fantastic after a week - 10 days. I start my "maintenance" next week. I have that for 2 years. I almost thought about not receiving the maintenance since I don't want to ever go through that fatigue again. I have Stage 4 Non-Hodgkin Follicular Lymphoma. From what I see on websites, this cancer seems pretty managable. I just want to find out what kind of time I can expect to survive. My doctor says that the chance of it returning is 100%. Any thoughts??