Diffuse Large B Cell Lymphoma

My husband has been recently diagnosed. Stage II A. He has had one R-CHOP infusion so far.
I'm very curious about other people's experience with the same diagnosis. How are you? Any advice?
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Comments

  • nikkig43
    nikkig43 Member Posts: 73
    Forgot to mention that his
    Forgot to mention that his tonsil is involved and a couple of surrounding lymph nodes in his neck. Otherwise his PET scan was clear. He is being treated at the Seattle Cancer Care Alliance. He felt really good until he started treatment. Now, he feels tired, frequent headaches and his joints and jaw ache. His first chemo infusion was 6 days ago.
  • jimwins
    jimwins Member Posts: 2,107
    Welcome
    Sorry you have to be here but you'll find a wealth of support here.

    I was diagnosed with stage 2 Diffuse Large B Cell Lymphoma in April of 2011 -
    primarily in the small intestine/mesentery area. I read your other post
    so I know your husband is going through RCHOP treatments.

    Please know there is hope and this type of lymphoma is very treatable and
    considered curable (cure= 5+ years in remission).

    I was treated with R-EPOCH which is very similar to your
    husband's treatment. My treatment/infusion was given 24/hrs per day over
    a period of 4 nights and 5 days about every 3 weeks. My "about me" pretty
    much covers things as well.

    I was very fortunate in that I handled things fairly well and was considered
    a "model patient". Don't get me wrong, it was no picnic and I had surgery
    early on which interrupted treatment and there were some "not so comfortable"
    things during/after the surgery (removed a small secion of my small intestine).
    Treatment is scary at first but by around cycle 3 it will be more routine and
    easier to deal with. Anxiety is normal and medication for that helped me
    tremendously (Atavan).

    My experience and likely for your husband (as I said, I was pretty fortunate
    in that I didn't have many major side effects):

    1. Loss of hair - probably around cycle 2/3 so get ready for that - I buzzed
    my head after cycle one. You can make this fun with creative hats/dew rags, etc.

    2. Progressively worse fatigue as the treatments continue.

    3. Prednisone side effects: Mood changes (may get cranky and/or emotional), difficulty sleeping until the prednisone wears off, ravenous appetite while prednisone is
    impacting his system.

    4. Netropenic period - there will be a period when blood counts will be down
    and you have to avoid crowds, sick people and raw foods. For me, it was usually
    about a week. Post treatment Nuelasta/similar to help the bone marrow raise blood
    counts to acceptable levels - joint and bone aches for 3-5 days after
    "the shot" - pain medication helped with this.

    Positive attitude and humor are free weapons in this WAR.

    It would help if you provided more info in the "about me" section of the profile.
    I just visited my oncologist on 2/6 and "yoohoo!" - I'm still in remision or
    NED (no evidence of disease).

    Again, there is hope and others will chime in soon to offer support. You can
    come here anytime, ask questions, vent, etc. That's what we're here for.

    Hugs, positive thoughts and wishing you the best,

    Jim
    DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)
    Members are sharing recipes!:
    ♥ Recipe Sharing Project
  • nikkig43
    nikkig43 Member Posts: 73
    jimwins said:

    Welcome
    Sorry you have to be here but you'll find a wealth of support here.

    I was diagnosed with stage 2 Diffuse Large B Cell Lymphoma in April of 2011 -
    primarily in the small intestine/mesentery area. I read your other post
    so I know your husband is going through RCHOP treatments.

    Please know there is hope and this type of lymphoma is very treatable and
    considered curable (cure= 5+ years in remission).

    I was treated with R-EPOCH which is very similar to your
    husband's treatment. My treatment/infusion was given 24/hrs per day over
    a period of 4 nights and 5 days about every 3 weeks. My "about me" pretty
    much covers things as well.

    I was very fortunate in that I handled things fairly well and was considered
    a "model patient". Don't get me wrong, it was no picnic and I had surgery
    early on which interrupted treatment and there were some "not so comfortable"
    things during/after the surgery (removed a small secion of my small intestine).
    Treatment is scary at first but by around cycle 3 it will be more routine and
    easier to deal with. Anxiety is normal and medication for that helped me
    tremendously (Atavan).

    My experience and likely for your husband (as I said, I was pretty fortunate
    in that I didn't have many major side effects):

    1. Loss of hair - probably around cycle 2/3 so get ready for that - I buzzed
    my head after cycle one. You can make this fun with creative hats/dew rags, etc.

    2. Progressively worse fatigue as the treatments continue.

    3. Prednisone side effects: Mood changes (may get cranky and/or emotional), difficulty sleeping until the prednisone wears off, ravenous appetite while prednisone is
    impacting his system.

    4. Netropenic period - there will be a period when blood counts will be down
    and you have to avoid crowds, sick people and raw foods. For me, it was usually
    about a week. Post treatment Nuelasta/similar to help the bone marrow raise blood
    counts to acceptable levels - joint and bone aches for 3-5 days after
    "the shot" - pain medication helped with this.

    Positive attitude and humor are free weapons in this WAR.

    It would help if you provided more info in the "about me" section of the profile.
    I just visited my oncologist on 2/6 and "yoohoo!" - I'm still in remision or
    NED (no evidence of disease).

    Again, there is hope and others will chime in soon to offer support. You can
    come here anytime, ask questions, vent, etc. That's what we're here for.

    Hugs, positive thoughts and wishing you the best,

    Jim
    DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)
    Members are sharing recipes!:
    ♥ Recipe Sharing Project

    Thank you so much Jim. This
    Thank you so much Jim. This is all so new, it's very nice to here from someone who has already been down the road we are heading. I'm so happy for you and your continued remission! Thank God!
    I appreciate so much your specific points regarding treatment. I agree that humor and a positive attitude are very important.
    Do you have any advice for me as the support person? I don't want to make light of the situation, but on the other hand, I don't want to be too serious either. I sometimes feel that I make him feel worse by doing too much for him or being " too nice" ( Hee Hee ). I think it makes him feel like he is really sick.
    ( We will be celebrating our 25th anniversary this year and we have 2 daughters. They are both in college. Our oldest lives at home with us. )

    Thanks again Jim! Take care.
  • anliperez915
    anliperez915 Member Posts: 770
    Hi nikkig43
    Hi nikkig43,
    I just wanted to say hi and welcome to the group! I have a different type than your husband, mine is Splenic Marginal Zone Lymphoma. I just started Rituxan treatment two weeks ago so I'm fairly new to the whole thing myself. Going through the motions as well! Take care and wish you and your hubby only the best in his treatment.

    Sincerely,
    Liz
  • allmost60
    allmost60 Member Posts: 3,178
    Hi
    Hi nikkig43,
    Do you live in Washington State? I live in Yakima Washington is why I asked. I do not have the same sub type of Lymphoma that your husband has, and my chemo cocktail was milder than the R-CHOP. With that being said, regardless of our different chemo's we still all have similar after affects. Fatigue, achey joints and spells of mood swings seem to come with the territory no matter the sub type. I have finished my first line chemo..CVP-R and now in my 2 year maint of Rituxan. As a rule, I feel pretty good other than my energy level still isn't where I'd like it to be. I also experience hip pain where my Bone Marrow Biopsy was done, but not severe enough to require pain meds...more of an achey numbness in my upper left butt cheek area. If I do things at a fast pace or over exert, I tend to get short of breath and my heart rate goes up. I'm slowly learning to take things down a notch and when I do, it seems to keep things in check. My advice as being the care giver is to just have patience and keep the household as normal as possible. My hubby fretted wayyy to much in the beginning, but has now worked out his own way of dealing with our situation. We talk more and take each day as it comes. Please stick with the group... the help you will receieve is amazing! Take care and best wishes to your hubby. Love...Sue
    (Follicular NHL-stage3-grade2-typeA(slow growth indolent) diagnosed June 2010 age 61
  • jimwins
    jimwins Member Posts: 2,107
    nikkig43 said:

    Thank you so much Jim. This
    Thank you so much Jim. This is all so new, it's very nice to here from someone who has already been down the road we are heading. I'm so happy for you and your continued remission! Thank God!
    I appreciate so much your specific points regarding treatment. I agree that humor and a positive attitude are very important.
    Do you have any advice for me as the support person? I don't want to make light of the situation, but on the other hand, I don't want to be too serious either. I sometimes feel that I make him feel worse by doing too much for him or being " too nice" ( Hee Hee ). I think it makes him feel like he is really sick.
    ( We will be celebrating our 25th anniversary this year and we have 2 daughters. They are both in college. Our oldest lives at home with us. )

    Thanks again Jim! Take care.

    Hugs
    Sue made some good points in her post regarding caregiving.
    I think communication is very important but don't be surprised if
    your husband doesn't open up in the beginning about some things.

    You have to make time for yourself and take care of yourself too.
    From my experience and personality, I wanted to do as much for myself
    as I could but it may be different in your situation so understand
    I'm relating based on "me" :). I'd say listen and observe and let
    your husband be your guide.

    Some good generic advice is to take everything one day at a time.
    Try not to worry too much about the future right now and be grateful
    for what you do have. One thing I think most of us here will agree
    upon, cancer is a beast but you learn what's valuable in your life
    and it's often the smallest and simplest of things. This will change
    you and your family's lives forever but it won't be all negative.
    You will learn and discover you have strength you didn't know you had.

    You may want to check out the "caregivers" board as well as there will
    be lots of ideas and advice there too. Your husband is welcome to join
    us here on the lymphoma board. There's a great bunch of folks here and
    he won't feel so alone in dealing with this. Keep us posted and
    "happy dances" await for each victory along the way.

    Congratulations on your upcoming 25th!

    Big hairy hugs (yep, it grew back;)),

    Jim
  • nikkig43
    nikkig43 Member Posts: 73
    allmost60 said:

    Hi
    Hi nikkig43,
    Do you live in Washington State? I live in Yakima Washington is why I asked. I do not have the same sub type of Lymphoma that your husband has, and my chemo cocktail was milder than the R-CHOP. With that being said, regardless of our different chemo's we still all have similar after affects. Fatigue, achey joints and spells of mood swings seem to come with the territory no matter the sub type. I have finished my first line chemo..CVP-R and now in my 2 year maint of Rituxan. As a rule, I feel pretty good other than my energy level still isn't where I'd like it to be. I also experience hip pain where my Bone Marrow Biopsy was done, but not severe enough to require pain meds...more of an achey numbness in my upper left butt cheek area. If I do things at a fast pace or over exert, I tend to get short of breath and my heart rate goes up. I'm slowly learning to take things down a notch and when I do, it seems to keep things in check. My advice as being the care giver is to just have patience and keep the household as normal as possible. My hubby fretted wayyy to much in the beginning, but has now worked out his own way of dealing with our situation. We talk more and take each day as it comes. Please stick with the group... the help you will receieve is amazing! Take care and best wishes to your hubby. Love...Sue
    (Follicular NHL-stage3-grade2-typeA(slow growth indolent) diagnosed June 2010 age 61

    Thank you all so much!
    Thank you Jim, Liz and Sue. I'm very grateful for all of your feedback, ideas and advice. I hope to be of support to you too, if needed in the future.
    And, yes we do live in Washington State, about 40 minutes NE of Seattle. We have been to Yakima many times. My husband's parents grew up and married there. He still has many relatives there :)
    I will let my husband, Joel, know about this site and encourage him to join. Good idea.
    He is feeling good today. I hope you all are too.
    Take care, Nikki.
  • LarrySurvivor6
    LarrySurvivor6 Member Posts: 5
    nikkig43 said:

    Forgot to mention that his
    Forgot to mention that his tonsil is involved and a couple of surrounding lymph nodes in his neck. Otherwise his PET scan was clear. He is being treated at the Seattle Cancer Care Alliance. He felt really good until he started treatment. Now, he feels tired, frequent headaches and his joints and jaw ache. His first chemo infusion was 6 days ago.

    6 time survivor
    My most recent cancer is large cell non hod neg. I had chops over a year ago. in remission being monitored. Told what I have is rare a low survival rate. In Each cancer I have has been rare and stats say I shouldnt have it. Dr, shake their head. I just tell them I like making them look good. Also I think I am on record in Akron and Cleveland that I am waliking history with 6 seperate cancers. You have to keep a positive attitude, good doctors, strong family and very srong faith in God. I would not have made it through this with out their support. stay strong, Larry
  • nikkig43
    nikkig43 Member Posts: 73

    6 time survivor
    My most recent cancer is large cell non hod neg. I had chops over a year ago. in remission being monitored. Told what I have is rare a low survival rate. In Each cancer I have has been rare and stats say I shouldnt have it. Dr, shake their head. I just tell them I like making them look good. Also I think I am on record in Akron and Cleveland that I am waliking history with 6 seperate cancers. You have to keep a positive attitude, good doctors, strong family and very srong faith in God. I would not have made it through this with out their support. stay strong, Larry

    Thank you Larry
    I appreciate your input. I admire your strength and positive attitude.
    My husband is feeling really good. He is currently getting his 2nd R-CHOP infusion. So far, so good.
    Take care Larry. I hope you are feeling good too.
    Nikki
  • Shannie76
    Shannie76 Member Posts: 8
    nikkig43 said:

    Thank you all so much!
    Thank you Jim, Liz and Sue. I'm very grateful for all of your feedback, ideas and advice. I hope to be of support to you too, if needed in the future.
    And, yes we do live in Washington State, about 40 minutes NE of Seattle. We have been to Yakima many times. My husband's parents grew up and married there. He still has many relatives there :)
    I will let my husband, Joel, know about this site and encourage him to join. Good idea.
    He is feeling good today. I hope you all are too.
    Take care, Nikki.

    My Husbands results are in:
    It has been a long wait and 3 biopsy's later we now have a diagnosis of Large B Cell Non Hodgkins Lymphoma. Long story short I first noticed the lumps in my husbands neck Aug 2011.

    He took it better than I did today from the ENT Dr. Im trying to be so supportive but I am so scared too. I don't really know what to expect I mean you hear all of these different medical terms for cancer but honestly I really didn't know the 1st thing about it & I didn't even know if I should tell the kids about it until I at least understood what it is. I do know that we have alot of appointments now fover the next 2 weeks.

    As for my husband he acts like its nothing & he will not talk about it because I don't think it has really hit him yet all Iknow is neither one of us know what to expect now. We seen the Oncologist( which I have never heard of before) on Mar 5th. Then he has another appointment where they are doing some sort of injection on Mar 12 then on the 15 we go back so they can do a scan.. & We also have a CT scan that is being scheduled asap.

    I have zero idea what half of this means & I think this is what really scares me I don't know what to expect now or why they are doing an injection on 1 day then scanning 3 days later??

    Thank You
    Shannon
  • DennisR
    DennisR Member Posts: 148
    nikkig43 said:

    Forgot to mention that his
    Forgot to mention that his tonsil is involved and a couple of surrounding lymph nodes in his neck. Otherwise his PET scan was clear. He is being treated at the Seattle Cancer Care Alliance. He felt really good until he started treatment. Now, he feels tired, frequent headaches and his joints and jaw ache. His first chemo infusion was 6 days ago.

    I had NHL stage 4 about 13
    I had NHL stage 4 about 13 years ago and had resection surgery followed by R chop chemo and was NSD for 8 years. I had a recurrance in 2008 which required further chemo (different than R-Chop)until the tumor disappeared,followed by a stem cell transplant in Feb,2009. (Which is a whole 'nother story) So far I'm NSD again and doing very well. The chemo your husband is getting causes the joint and bone pain in between treatments. He will probably start getting some shots to promote his white cell production between suceeding treatments which in turn worsens the bone pain etc, it can be very difficult, but it kills the cancer and goes away when the treatments are completed, usually 8 sessions. I got some relief from accupuncture therapy while doing the chemo.
  • nikkig43
    nikkig43 Member Posts: 73
    Shannie76 said:

    My Husbands results are in:
    It has been a long wait and 3 biopsy's later we now have a diagnosis of Large B Cell Non Hodgkins Lymphoma. Long story short I first noticed the lumps in my husbands neck Aug 2011.

    He took it better than I did today from the ENT Dr. Im trying to be so supportive but I am so scared too. I don't really know what to expect I mean you hear all of these different medical terms for cancer but honestly I really didn't know the 1st thing about it & I didn't even know if I should tell the kids about it until I at least understood what it is. I do know that we have alot of appointments now fover the next 2 weeks.

    As for my husband he acts like its nothing & he will not talk about it because I don't think it has really hit him yet all Iknow is neither one of us know what to expect now. We seen the Oncologist( which I have never heard of before) on Mar 5th. Then he has another appointment where they are doing some sort of injection on Mar 12 then on the 15 we go back so they can do a scan.. & We also have a CT scan that is being scheduled asap.

    I have zero idea what half of this means & I think this is what really scares me I don't know what to expect now or why they are doing an injection on 1 day then scanning 3 days later??

    Thank You
    Shannon

    Hi Shannon,
    My husband and I are only a few weeks further down the road then you are. The first few weeks were the hardest for me, during all of the testing and appointments. It gets easier once you know what Stage he is in. You know what you're up against.
    You sound just like me and my husband sounds just like yours :). He really didn't seem too upset or even worried so I made up for it, unfortunately.
    Here's what I know about Diffuse Large B Cell Lymphoma. Our oncologist said that if he is Stage 1or 2, he has a 85 -90% chance of complete cure ( no reoccurance). If he is Stage 3 or 4, it's still very curable ( around 60% ). He said that if you have to get cancer, this is the one to get.
    My husband had a swollen tonsil for months and finally went to the doctor when he was having trouble swallowing food. After all the testing, it turns out he is in Stage 2. His tonsil is affected and a couple of surrounding lymph nodes, but it hasn't spread beyond his neck.
    He handled his first chemo infusion pretty well. No nausea or vomiting, but he felt tired and restless at the same time. He couldn't sleep very well. And the good news is that the doctor feels like he is already in remission after one treatment! His tonsil is completely back to normal. He will continue with the rest of the treatments ( 2 more chemo infusions and radiation) to decrease the chance of it coming back.
    Please contact me if you want chat or vent or whatever, [email protected]
    Take care,
    Nikki
  • nikkig43
    nikkig43 Member Posts: 73
    DennisR said:

    I had NHL stage 4 about 13
    I had NHL stage 4 about 13 years ago and had resection surgery followed by R chop chemo and was NSD for 8 years. I had a recurrance in 2008 which required further chemo (different than R-Chop)until the tumor disappeared,followed by a stem cell transplant in Feb,2009. (Which is a whole 'nother story) So far I'm NSD again and doing very well. The chemo your husband is getting causes the joint and bone pain in between treatments. He will probably start getting some shots to promote his white cell production between suceeding treatments which in turn worsens the bone pain etc, it can be very difficult, but it kills the cancer and goes away when the treatments are completed, usually 8 sessions. I got some relief from accupuncture therapy while doing the chemo.

    Hi Dennis
    Wow, I'm so sorry that you had a reoccurance after 8 years! What a nightmare !
    I'm glad that you are feeling well again.
    Thank you so much for heads up on the chemo side effects. Good to know. I will let my husband know. Luckily, he is only scheduled for 3 R-CHOP infusions then some radiationn.
    We are looking forward to getting all of this behind us.
    Take care, Nikki.
  • miss maggie
    miss maggie Member Posts: 929
    DennisR said:

    I had NHL stage 4 about 13
    I had NHL stage 4 about 13 years ago and had resection surgery followed by R chop chemo and was NSD for 8 years. I had a recurrance in 2008 which required further chemo (different than R-Chop)until the tumor disappeared,followed by a stem cell transplant in Feb,2009. (Which is a whole 'nother story) So far I'm NSD again and doing very well. The chemo your husband is getting causes the joint and bone pain in between treatments. He will probably start getting some shots to promote his white cell production between suceeding treatments which in turn worsens the bone pain etc, it can be very difficult, but it kills the cancer and goes away when the treatments are completed, usually 8 sessions. I got some relief from accupuncture therapy while doing the chemo.

    Dear Dennis,

    I am so glad things turned out well for you. I know it must of come as a shock to be
    re-diagnosed after 8 years of remission. The good news, how well you are doing now. Yes, I
    know it comes at a price.

    I also had resection surgery in Sept 2009. My small bowel perforated caused by NHL.
    If you don't mind me asking, where did you have the resection?

    Hopefully and praying for you another 8 years and beyond total remission.

    God Bless Maggie
  • jhale17
    jhale17 Member Posts: 9
    Experience
    At first I did not know anything but to follow the direction of my primary care doctor. Later I found that it was best for me to become my own advocate. I had to acquire knowledge and have input to making decisions on the options available to me and when necessary get second opinions.

    I am a survivor for over eleven years with four occurrences of diffuse large B cell Lymphoma. At first I was told that I would be inconvenienced and if the cancer came back it would be easily treated. So far they have been right.

    Understand every patient is different I have friends that have had only one occurrence and it was over twenty years ago. Let’s hope this one occurrence is the case for you.

    Here is a brief run down on my four treatments.

    First Occurrence July 2000 to Jan 2001

    At base of tongue, treatment was out patient throat biopsy, 6 CHOP chemo, & 24 radiations, results - Remission

    Second occurrence July 2004 to Dec 2004

    On inside of throat, treatment was throat biopsy and six three-days stays in the hospital, chemo RICE chemo treatments, results - Remission

    Third recurrence June 14, 2007 to Oct 2007

    In upper abdomen lymph nodes

    Installed Titanium Mini-Port, July 12, 2007

    Treatment Jul & Aug 2007, chemo, EPOCH+R with two 5-day hospital stays

    Radioimmunotherapy, Zevalin injection treatment Oct 23, 2007, results Remission

    Forth occurrence started Dec 29, 2011

    Location, in abdomen lymph nodes, chemo Treanda +R six treatments, ongoing, just completed third treatment. Good prospects for remission.
  • nikkig43
    nikkig43 Member Posts: 73
    jhale17 said:

    Experience
    At first I did not know anything but to follow the direction of my primary care doctor. Later I found that it was best for me to become my own advocate. I had to acquire knowledge and have input to making decisions on the options available to me and when necessary get second opinions.

    I am a survivor for over eleven years with four occurrences of diffuse large B cell Lymphoma. At first I was told that I would be inconvenienced and if the cancer came back it would be easily treated. So far they have been right.

    Understand every patient is different I have friends that have had only one occurrence and it was over twenty years ago. Let’s hope this one occurrence is the case for you.

    Here is a brief run down on my four treatments.

    First Occurrence July 2000 to Jan 2001

    At base of tongue, treatment was out patient throat biopsy, 6 CHOP chemo, & 24 radiations, results - Remission

    Second occurrence July 2004 to Dec 2004

    On inside of throat, treatment was throat biopsy and six three-days stays in the hospital, chemo RICE chemo treatments, results - Remission

    Third recurrence June 14, 2007 to Oct 2007

    In upper abdomen lymph nodes

    Installed Titanium Mini-Port, July 12, 2007

    Treatment Jul & Aug 2007, chemo, EPOCH+R with two 5-day hospital stays

    Radioimmunotherapy, Zevalin injection treatment Oct 23, 2007, results Remission

    Forth occurrence started Dec 29, 2011

    Location, in abdomen lymph nodes, chemo Treanda +R six treatments, ongoing, just completed third treatment. Good prospects for remission.

    Hi jhale17
    This is awful. I'm so sorry that you have had to go through all of this.
    I'm trying to figure out why some people are cured permanently after one cycle of treatments and others experience a reoccurance? Could it be the initial type of treatment? We will be talking to my husbands doctor in a few weeks about whether he should do radiation after the 3 RCHOP infusions or add 3-4 more RCHOP treatments instead. I thought he said once that radiation will decrease the chance of reoccurance. My husband is a little afraid of radiation, and leaning more towards extending the RCHOP treatments instead. We'll see what the doctor says.
    I wish you the best. I pray for a permanent cure for you. Take care,
    Nikki
  • jhale17
    jhale17 Member Posts: 9
    nikkig43 said:

    Hi jhale17
    This is awful. I'm so sorry that you have had to go through all of this.
    I'm trying to figure out why some people are cured permanently after one cycle of treatments and others experience a reoccurance? Could it be the initial type of treatment? We will be talking to my husbands doctor in a few weeks about whether he should do radiation after the 3 RCHOP infusions or add 3-4 more RCHOP treatments instead. I thought he said once that radiation will decrease the chance of reoccurance. My husband is a little afraid of radiation, and leaning more towards extending the RCHOP treatments instead. We'll see what the doctor says.
    I wish you the best. I pray for a permanent cure for you. Take care,
    Nikki

    Care Giving Hints
    I have notices that over the years I have had treatments that detail things change in how they administer the same meds. I received CHOP in 2000 in a twenty minute infusion. Here, today they infuse CHOP in one and one half hours and use Rituxan with it. I had six CHOP infusions and twenty-four radiation treatments to my neck. What I am trying to point out is that treatments changes as they learn more from treating patience. If you have questions about the options available to you then a second doctor’s opinion may ease your mind. Your primary care physician may be of help to you on providing an explanation of the overall process.
    The care giving of a cancer patient is a learning experience. My wife had breast cancer in 1991 and pancreatic in 2006 that took her life after eighteen months of doing everything to prolong her life. In 91 I was like you, knew nothing about cancer and assisted her in the same way I did for any other illnesses.
    It wasn’t until I got cancer that I understood what one feels when they say you have cancer. Most survivors I talk with agree that the shock of being told is devastating and your life is changed forever. You lead your life as survivor from the day you’re diagnosed and for the rest of your life.
    The treatment period is where you as the care giving needs to understand that the side effects of each treatment vary. One doctor said the last treatment’s side effects are no predictor of the next treatments. So as you go through the treatments you may find the need to change things like what tasted good last time does not now. This can happen with other things like sleep patterns, resting places, walking, and reading. When I was in CHOP I could not watch the fast action of a football game on TV.
    Eating is important issue to deal with and with the treatment in the neck area swallowing may be a problem. If the patient has periods of tastelessness, where most things taste like cardboard, they will require an attitude adjustment. A friend of mine said it this way, “My Marine doctor told me, ‘If you don’t eat you die!’” My doctors told me to eat anything, just eat. I was sitting next to a survivor once waiting for an injection and he said he was happy because last evening he was able to eat a backed potato. Try a variety of foods to see if you can find those that please the palate. What good this month may not be next month. If you do not eat one night it is not the end of the world and tomorrow may be better.
    I have been given what they call miracle mouthwash to use for dealing with mouth sores and sore throat. The doctor mixes an RX of different things to soothe the throat. It is like what the dentists does with an injection plus heals the mouth.
  • jhale17
    jhale17 Member Posts: 9
    jhale17 said:

    Care Giving Hints
    I have notices that over the years I have had treatments that detail things change in how they administer the same meds. I received CHOP in 2000 in a twenty minute infusion. Here, today they infuse CHOP in one and one half hours and use Rituxan with it. I had six CHOP infusions and twenty-four radiation treatments to my neck. What I am trying to point out is that treatments changes as they learn more from treating patience. If you have questions about the options available to you then a second doctor’s opinion may ease your mind. Your primary care physician may be of help to you on providing an explanation of the overall process.
    The care giving of a cancer patient is a learning experience. My wife had breast cancer in 1991 and pancreatic in 2006 that took her life after eighteen months of doing everything to prolong her life. In 91 I was like you, knew nothing about cancer and assisted her in the same way I did for any other illnesses.
    It wasn’t until I got cancer that I understood what one feels when they say you have cancer. Most survivors I talk with agree that the shock of being told is devastating and your life is changed forever. You lead your life as survivor from the day you’re diagnosed and for the rest of your life.
    The treatment period is where you as the care giving needs to understand that the side effects of each treatment vary. One doctor said the last treatment’s side effects are no predictor of the next treatments. So as you go through the treatments you may find the need to change things like what tasted good last time does not now. This can happen with other things like sleep patterns, resting places, walking, and reading. When I was in CHOP I could not watch the fast action of a football game on TV.
    Eating is important issue to deal with and with the treatment in the neck area swallowing may be a problem. If the patient has periods of tastelessness, where most things taste like cardboard, they will require an attitude adjustment. A friend of mine said it this way, “My Marine doctor told me, ‘If you don’t eat you die!’” My doctors told me to eat anything, just eat. I was sitting next to a survivor once waiting for an injection and he said he was happy because last evening he was able to eat a backed potato. Try a variety of foods to see if you can find those that please the palate. What good this month may not be next month. If you do not eat one night it is not the end of the world and tomorrow may be better.
    I have been given what they call miracle mouthwash to use for dealing with mouth sores and sore throat. The doctor mixes an RX of different things to soothe the throat. It is like what the dentists does with an injection plus heals the mouth.

    Chop Time
    I received CHOP in 40 not 20 minutes.
  • Shannie76
    Shannie76 Member Posts: 8
    jhale17 said:

    Care Giving Hints
    I have notices that over the years I have had treatments that detail things change in how they administer the same meds. I received CHOP in 2000 in a twenty minute infusion. Here, today they infuse CHOP in one and one half hours and use Rituxan with it. I had six CHOP infusions and twenty-four radiation treatments to my neck. What I am trying to point out is that treatments changes as they learn more from treating patience. If you have questions about the options available to you then a second doctor’s opinion may ease your mind. Your primary care physician may be of help to you on providing an explanation of the overall process.
    The care giving of a cancer patient is a learning experience. My wife had breast cancer in 1991 and pancreatic in 2006 that took her life after eighteen months of doing everything to prolong her life. In 91 I was like you, knew nothing about cancer and assisted her in the same way I did for any other illnesses.
    It wasn’t until I got cancer that I understood what one feels when they say you have cancer. Most survivors I talk with agree that the shock of being told is devastating and your life is changed forever. You lead your life as survivor from the day you’re diagnosed and for the rest of your life.
    The treatment period is where you as the care giving needs to understand that the side effects of each treatment vary. One doctor said the last treatment’s side effects are no predictor of the next treatments. So as you go through the treatments you may find the need to change things like what tasted good last time does not now. This can happen with other things like sleep patterns, resting places, walking, and reading. When I was in CHOP I could not watch the fast action of a football game on TV.
    Eating is important issue to deal with and with the treatment in the neck area swallowing may be a problem. If the patient has periods of tastelessness, where most things taste like cardboard, they will require an attitude adjustment. A friend of mine said it this way, “My Marine doctor told me, ‘If you don’t eat you die!’” My doctors told me to eat anything, just eat. I was sitting next to a survivor once waiting for an injection and he said he was happy because last evening he was able to eat a backed potato. Try a variety of foods to see if you can find those that please the palate. What good this month may not be next month. If you do not eat one night it is not the end of the world and tomorrow may be better.
    I have been given what they call miracle mouthwash to use for dealing with mouth sores and sore throat. The doctor mixes an RX of different things to soothe the throat. It is like what the dentists does with an injection plus heals the mouth.

    Hello
    Thank you. I am sorry to hear about your wife, and to hear of everything you have and are going through. My husband lost his mom to pancreatic cancer It wasand still is very hard for him.
    My husband is just now after 2 weeks of being diagnosed he is finally starting to come to terms with being diagnosed with NHL. For awhile there it was always referred to as the C word and it was complete denial.

    We are just starting on our journey & we have such a busy week of testing now ahead of us. This Monday he now has a CT scan, & an injection of dye for his Gallium scan and then he has a Chemo information class. On Wed he has an Echo test for his heart & then Thursday back to have the Dye read in his body.

    Then on the 19th back to the Oncologist & if everything is good on the 20th he starts his Chemo. It was alot to take in & we have now found a 3rd lump this time on the left side of his neck. He is always tired, he has lost 25lbs and zero energy sometimes & now he is starting to have some stomach pains that come and go.


    Thank You
  • miss maggie
    miss maggie Member Posts: 929
    jhale17 said:

    Care Giving Hints
    I have notices that over the years I have had treatments that detail things change in how they administer the same meds. I received CHOP in 2000 in a twenty minute infusion. Here, today they infuse CHOP in one and one half hours and use Rituxan with it. I had six CHOP infusions and twenty-four radiation treatments to my neck. What I am trying to point out is that treatments changes as they learn more from treating patience. If you have questions about the options available to you then a second doctor’s opinion may ease your mind. Your primary care physician may be of help to you on providing an explanation of the overall process.
    The care giving of a cancer patient is a learning experience. My wife had breast cancer in 1991 and pancreatic in 2006 that took her life after eighteen months of doing everything to prolong her life. In 91 I was like you, knew nothing about cancer and assisted her in the same way I did for any other illnesses.
    It wasn’t until I got cancer that I understood what one feels when they say you have cancer. Most survivors I talk with agree that the shock of being told is devastating and your life is changed forever. You lead your life as survivor from the day you’re diagnosed and for the rest of your life.
    The treatment period is where you as the care giving needs to understand that the side effects of each treatment vary. One doctor said the last treatment’s side effects are no predictor of the next treatments. So as you go through the treatments you may find the need to change things like what tasted good last time does not now. This can happen with other things like sleep patterns, resting places, walking, and reading. When I was in CHOP I could not watch the fast action of a football game on TV.
    Eating is important issue to deal with and with the treatment in the neck area swallowing may be a problem. If the patient has periods of tastelessness, where most things taste like cardboard, they will require an attitude adjustment. A friend of mine said it this way, “My Marine doctor told me, ‘If you don’t eat you die!’” My doctors told me to eat anything, just eat. I was sitting next to a survivor once waiting for an injection and he said he was happy because last evening he was able to eat a backed potato. Try a variety of foods to see if you can find those that please the palate. What good this month may not be next month. If you do not eat one night it is not the end of the world and tomorrow may be better.
    I have been given what they call miracle mouthwash to use for dealing with mouth sores and sore throat. The doctor mixes an RX of different things to soothe the throat. It is like what the dentists does with an injection plus heals the mouth.

    Too much
    I am sorry to hear your wife passed away from Pancreatic Cancer. MY husband passed
    away from this cancer in May 2004. He passed away exactly 2 years from DX. He was treated
    with Gemcitabine (Gemzar) for almost a year. I do believe this chemo kept him pain free
    to the end. He did have a big problem eating.

    Ask your doctor if you can take vitamins. You must eat. Eat many times a day if you have
    to. Drink Insure or any vitamin drinks.

    I am truly sorry for all you have gone through. When I was DX, I went into such a depression.
    The more I read and learned from doctor's, our DX is treatable in most cases.

    Keep us posted on what's going on with you. Maggie