Large B-cell lymphoma

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  • Steve2590
    Steve2590 Member Posts: 6
    Just diagnosed

    I just got diagnosed with diffuse large B cell non-Hodgkin's Lymphoma. Started on my skin...arm and leg. I have a bone marrow draw and PET scan this week. Anyone here been through this...words of advice/encouragement?

  • Cocamoxb
    Cocamoxb Member Posts: 7
    Steve2590 said:

    Just diagnosed

    I just got diagnosed with diffuse large B cell non-Hodgkin's Lymphoma. Started on my skin...arm and leg. I have a bone marrow draw and PET scan this week. Anyone here been through this...words of advice/encouragement?

    Stay positive & hydrated!

    Steve,

     

    youll find many many folks here that have a wealth of info.

     

    just a couple things I'd suggest.

     

    I had double hit (MYC & BLC2) Non-Hodgkin lymphoma DLBCL. I'd highly recommend making sure they perform a FISH test.

     

    Up to and during treatment, do your best to stay hydrated and active. Some days you won't feel like doing much. That's perfectly fine.

     

    Lymphoma is very treatable. Don't be afraid to get a second opinion. Find the best specialist in your area.

     

    Kick it's butt!!

     

    Very sorry you had to find this message board, but glad you're here! All the best to you and your family!,,,

     

    Harry

  • Sandy Ray
    Sandy Ray Member Posts: 143 Member
    Steve2590 said:

    Just diagnosed

    I just got diagnosed with diffuse large B cell non-Hodgkin's Lymphoma. Started on my skin...arm and leg. I have a bone marrow draw and PET scan this week. Anyone here been through this...words of advice/encouragement?

    Steve2590

    Most everyone on this site has heard the diagnosis of Lymphoma for them or a family member. There are lots of success stories. Lymphoma is usually very treatable . I hesitate to say it is the best kind of cancer to have because my choice is none at all. I found research helped me know what I was really facing. Some prefer to just let the Doctor tell them what to do. I met with 3 Oncologist before I started treatment. This was in part to the fact my type was extremely rare and I had 2 types at the same time. I ended up using the local oncologists even though his practice is smaller. Ultimately the Chemo was the same no matter who I used. I asked my Oncologist to recommend his top picks for Hospitals in the US for the type of Lymphoma I was diagnosed with. He gave me 2 choices and I researched them and chose one. He was fully behind my getting as many opinions as it took make me feel comfortable. He still confers with that research hospital on my treatment. Cost me about $1,500.00 to fly out to the hospital and meet with the Oncologist but I came back comfortable in the course of treatment.

    Definite diagnosis of specific type of Lymphoma is one of the most critical steps in the process. My biopsy went to 3  different labs. Ended up at National Institute of Health because of how rare it was. Once that is nailed down it is usually a matter of matching the Chemo to the Lymphoma.

    Put yourself at ease Chemo is not quite like the stories we have all heard of years gone by. Many of the side effects are managed (especially nausea). There are some side effects and when you are fighting cancer some things that normally would be an inconvenience really can frustrate you. This website is a wealth of knowledge to help minimize those side effects with things that have worked for them. Just come here and ask.

    Just continue to keep everyone in the loop and we will be here to help all we can. 

    I went to Doctor 2/2017 and just finished Chemo 7/2017 so 5 months. Right now it shows I am in complete remission. I still am recovering from the effects of the Chemo. I cannot tell you how lomg that will take because I have not made it that far yet. I can tell you it has not been fun but looks like there may be a lot of good years still ahead. 

    Go and do what you can as much as you feel like it. During Chemo there will be days you do not feel like it. Chemo is cumulative so the first few treatments are usually the easiest. Remember everyone is different. I got the flu with my first treatment so for me the first was not so easy. 

    You can do this! Do not hesitate to ask any questions at anytime! We are here to help!

    Sandy Ray

  • Steve2590
    Steve2590 Member Posts: 6
    Cocamoxb said:

    Stay positive & hydrated!

    Steve,

     

    youll find many many folks here that have a wealth of info.

     

    just a couple things I'd suggest.

     

    I had double hit (MYC & BLC2) Non-Hodgkin lymphoma DLBCL. I'd highly recommend making sure they perform a FISH test.

     

    Up to and during treatment, do your best to stay hydrated and active. Some days you won't feel like doing much. That's perfectly fine.

     

    Lymphoma is very treatable. Don't be afraid to get a second opinion. Find the best specialist in your area.

     

    Kick it's butt!!

     

    Very sorry you had to find this message board, but glad you're here! All the best to you and your family!,,,

     

    Harry

    FISH Test

    Thanks very much Harry. It is great to hear your words of encouragemen. What is the FISH test? I am being seen by a National Cancer Center at the University of Kansas Medical Center in Kansas City.

  • Steve2590
    Steve2590 Member Posts: 6
    edited July 2017 #46
    Sandy Ray said:

    Steve2590

    Most everyone on this site has heard the diagnosis of Lymphoma for them or a family member. There are lots of success stories. Lymphoma is usually very treatable . I hesitate to say it is the best kind of cancer to have because my choice is none at all. I found research helped me know what I was really facing. Some prefer to just let the Doctor tell them what to do. I met with 3 Oncologist before I started treatment. This was in part to the fact my type was extremely rare and I had 2 types at the same time. I ended up using the local oncologists even though his practice is smaller. Ultimately the Chemo was the same no matter who I used. I asked my Oncologist to recommend his top picks for Hospitals in the US for the type of Lymphoma I was diagnosed with. He gave me 2 choices and I researched them and chose one. He was fully behind my getting as many opinions as it took make me feel comfortable. He still confers with that research hospital on my treatment. Cost me about $1,500.00 to fly out to the hospital and meet with the Oncologist but I came back comfortable in the course of treatment.

    Definite diagnosis of specific type of Lymphoma is one of the most critical steps in the process. My biopsy went to 3  different labs. Ended up at National Institute of Health because of how rare it was. Once that is nailed down it is usually a matter of matching the Chemo to the Lymphoma.

    Put yourself at ease Chemo is not quite like the stories we have all heard of years gone by. Many of the side effects are managed (especially nausea). There are some side effects and when you are fighting cancer some things that normally would be an inconvenience really can frustrate you. This website is a wealth of knowledge to help minimize those side effects with things that have worked for them. Just come here and ask.

    Just continue to keep everyone in the loop and we will be here to help all we can. 

    I went to Doctor 2/2017 and just finished Chemo 7/2017 so 5 months. Right now it shows I am in complete remission. I still am recovering from the effects of the Chemo. I cannot tell you how lomg that will take because I have not made it that far yet. I can tell you it has not been fun but looks like there may be a lot of good years still ahead. 

    Go and do what you can as much as you feel like it. During Chemo there will be days you do not feel like it. Chemo is cumulative so the first few treatments are usually the easiest. Remember everyone is different. I got the flu with my first treatment so for me the first was not so easy. 

    You can do this! Do not hesitate to ask any questions at anytime! We are here to help!

    Sandy Ray

    Thanks

    Sandy Ray,

    Great words of advice and encouragement. So happy for you with your remission, I hope you never face it again. This is my second bout with cancer. I had surgery and radiation for prostate cancer in 2006. Last year I had my 10 year anniversary of basically zero PSA's.  I will be back to let you know how I am doing and to get advice. Thanks again.

     

    Steve

  • Evarista
    Evarista Member Posts: 336 Member
    edited July 2017 #47
    FISH molecular diagnosis

    Hi Steve, just a quick note.  FISH stands for "fluorescent in situ hybridization" and refers to one of several molecular (DNA) tests done on blood and bone marrow cells. Sounds as though you are being seen at an NCI-designated cancer center and I imagine that they will do molecular testing to look for DNA changes. These test take several days to perform, so do not expect to get those results right away. Talk more later...Good luck.

  • Steve2590
    Steve2590 Member Posts: 6
    Stage 4 Lymphoma plus an adrenal spot

    My cancer was diagnosed at Stage 4 but mainly on my skin. The PET Scan also showed a spot on one of my adrenal glands. Doc is not sure what it is but thinks it is also cancer.  I have to have that biopsied this week. It is rare for that to be Lymphoma but if it is the prognsis is not good.  Regardless I have multiple cycles of chemo ahead. Never had it before. Any thoughts or suggestions with coping with it? Thanks 

  • lindary
    lindary Member Posts: 711 Member
    Chemo

    Part of the deal with chemo depends on which drugs you get. Some are harder on the system thant others. Drs do have meds to help deal with things like nausea and pain. There are probably other side-effects that can also be dealt with. One "drug" is prednisone. If given it can be a very high dosage (200 mg a day for 5 days) then stop. It's like running a 100 miles an hour then STOP. If you have to take this one I recommend planning a nap the last day and for 2 - 3 days after that. 

    The other thing is water. When getting chemo the nurses may say you don't need to drink water because you are also getting saline. Then other nurses say it is best to be drinking water anyway during treatment. My take is to play it safe and drink the water. Medical recommendation is 2 liters of water day of chemo and for at least a week after to help flush out the dead cells and un-used chemo drugs. Other than that it is one day at a time. I was able to work the days between chemo sessions.  I am in IT so I worked aat home for the week after chemo and then in the office until the next chemo. 

    Let us know how things go. 

  • Sandy Ray
    Sandy Ray Member Posts: 143 Member
    edited July 2017 #50
    Steve2590 said:

    Stage 4 Lymphoma plus an adrenal spot

    My cancer was diagnosed at Stage 4 but mainly on my skin. The PET Scan also showed a spot on one of my adrenal glands. Doc is not sure what it is but thinks it is also cancer.  I have to have that biopsied this week. It is rare for that to be Lymphoma but if it is the prognsis is not good.  Regardless I have multiple cycles of chemo ahead. Never had it before. Any thoughts or suggestions with coping with it? Thanks 

    Stage 4

    Steve,

    My Oncologist never really wanted to give a stage to me. When pressed he said 3B or 4 the B is becomes of some of the symptoms. In my researich I have found they do not list Lymphoma as stage 4 in many places. Whatever the case the idea is has spread to many locations. Mine was as well. Lymphoma stages are not like most cancers. The outcome is not as greatly affected as with other cancers. 

    In response to Chemo it is not an easy questIon. There are so many types and each vary in how tough they are on you. When they tell you what type  you will be taking will be much easier for someone to give you some advice.  Some cause hair loss, some do not etc....  Just be comforted that they are much better at treating the side effects of the chemo than they used to be. My greatest fear was laying in bed with nausea all day. I never felt nauseous once. Of course that is different for everyone based on the Chemo and the person. My 2 worst side effects were constipation and it can be a real problem if you do not stay ahead of it. Drinking lots of water helps with this and for me some stool softeners and laxatives. Not a pretty subject but when you are drained and not a lot of energy things like that can be a big deal. My other worst part was Prednisone and it is not Chemo but a steroid . I had to take 100mg for 5 days. Everyone reacts to it differently. My only real reactions were my blood sugar went up and I had to go on no sugar or Carb diet for about 10 days until I had been off it for a while. I took it every treatment starting on the day of infusion and lasting 5 days. Did not make me sick just had to adjust my diet unless I wanted to take medicine for diabetes for 10 days. I chose to adjust my diet. The other issue was about 2 days after Coming off the Prednisone was crash day. Body ached low grade fever and I always tried to sleep a lot that day.

    Of course your regime may not include the Prednisone. So back to my original statement knowing what kind of Chemo will give you a much better idea of what you are facing.

    We are still here with you as you find out more we will do all we can to help. For me my Chemo on scale from 1-10 and 10 being unbearable I would say a 4. My biggest problem now is I am done with it and I am ready to get my energy levels back so I can feel like going out and doing something. My last treatment was 13 days ago so I know it will take time. By the way Chemo is cumulative so you get weaker as you go so do as much as you feel like on the front end. Because you will most likely not be doing much on the back end. Not to scare you it does not necessarily hurt but it does make you feel like you are 120 years old near the end. 

    Sandy Ray

  • Steve2590
    Steve2590 Member Posts: 6
    Sandy Ray said:

    Stage 4

    Steve,

    My Oncologist never really wanted to give a stage to me. When pressed he said 3B or 4 the B is becomes of some of the symptoms. In my researich I have found they do not list Lymphoma as stage 4 in many places. Whatever the case the idea is has spread to many locations. Mine was as well. Lymphoma stages are not like most cancers. The outcome is not as greatly affected as with other cancers. 

    In response to Chemo it is not an easy questIon. There are so many types and each vary in how tough they are on you. When they tell you what type  you will be taking will be much easier for someone to give you some advice.  Some cause hair loss, some do not etc....  Just be comforted that they are much better at treating the side effects of the chemo than they used to be. My greatest fear was laying in bed with nausea all day. I never felt nauseous once. Of course that is different for everyone based on the Chemo and the person. My 2 worst side effects were constipation and it can be a real problem if you do not stay ahead of it. Drinking lots of water helps with this and for me some stool softeners and laxatives. Not a pretty subject but when you are drained and not a lot of energy things like that can be a big deal. My other worst part was Prednisone and it is not Chemo but a steroid . I had to take 100mg for 5 days. Everyone reacts to it differently. My only real reactions were my blood sugar went up and I had to go on no sugar or Carb diet for about 10 days until I had been off it for a while. I took it every treatment starting on the day of infusion and lasting 5 days. Did not make me sick just had to adjust my diet unless I wanted to take medicine for diabetes for 10 days. I chose to adjust my diet. The other issue was about 2 days after Coming off the Prednisone was crash day. Body ached low grade fever and I always tried to sleep a lot that day.

    Of course your regime may not include the Prednisone. So back to my original statement knowing what kind of Chemo will give you a much better idea of what you are facing.

    We are still here with you as you find out more we will do all we can to help. For me my Chemo on scale from 1-10 and 10 being unbearable I would say a 4. My biggest problem now is I am done with it and I am ready to get my energy levels back so I can feel like going out and doing something. My last treatment was 13 days ago so I know it will take time. By the way Chemo is cumulative so you get weaker as you go so do as much as you feel like on the front end. Because you will most likely not be doing much on the back end. Not to scare you it does not necessarily hurt but it does make you feel like you are 120 years old near the end. 

    Sandy Ray

    Thanks

     Thanks, it is great to have your support and tips.

  • Steve2590
    Steve2590 Member Posts: 6
    edited July 2017 #52
    lindary said:

    Chemo

    Part of the deal with chemo depends on which drugs you get. Some are harder on the system thant others. Drs do have meds to help deal with things like nausea and pain. There are probably other side-effects that can also be dealt with. One "drug" is prednisone. If given it can be a very high dosage (200 mg a day for 5 days) then stop. It's like running a 100 miles an hour then STOP. If you have to take this one I recommend planning a nap the last day and for 2 - 3 days after that. 

    The other thing is water. When getting chemo the nurses may say you don't need to drink water because you are also getting saline. Then other nurses say it is best to be drinking water anyway during treatment. My take is to play it safe and drink the water. Medical recommendation is 2 liters of water day of chemo and for at least a week after to help flush out the dead cells and un-used chemo drugs. Other than that it is one day at a time. I was able to work the days between chemo sessions.  I am in IT so I worked aat home for the week after chemo and then in the office until the next chemo. 

    Let us know how things go. 

    Prednisone

     Yes I will be getting prednisone. So thanks for the advice. I aleady drink over 2 liters of water a day so I will keep that up. 

  • Rexmax
    Rexmax Member Posts: 55 Member
    Upcoming PET Scan

    Hi y'all I'm halfway Thur my 6 cycles of R-Chop, and will be getting my PET Scan Aug 3rd. I know I need to be low carb,low sugar and high protein the day before however at the moment I cannot do any food as the taste of everything is just awful and makes me gag. I have been doing meal replacements and ensure by placing the straw all the to back of throat just to get it done. I found a high protein shake (30 gms) that has 1gm sugar and 5gm carb. Has anyone done shakes day before PET Scan ? Do you have to be high Protein for PET Scan? Thanks in advance for any advice..... Lillian.  By the way I'm from Arizona 

  • PBL
    PBL Member Posts: 366 Member
    Congratulations!

    Hello Lillian,

    You're already halfway through... How time flies!

    Regarding your upcoming PETscan, I would refer you to the instructions you were given.

    What I know (based on my readings AND on the instructions given to me before my own PETscans) is that you should not engage in any strenuous physical exercise starting the day before AND you should be on a complete fast (ONLY plain water allowed - that means NO flavored water, tea, coffee, soda) for at least six hours prior to your appointment.

    The reason for this is that the success of this imaging technique is based on the glucose avidity of cancer cells as compared to that of "normal", non-cancerous cells. Your cancer cells - if there are any clusters remaining at this point - will be all the more visible if they have been deprived of fuel (i.e. glucose or other "sugars") for several hours, as their gluttony will "light up" the screen against "normal", not-particularly-avid cells (which is why you should also refrain from strenuous exercise the day before).

    As I understand it, you do not particularly need to be on a high-protein diet - as long as you do not feed those cancer cells or stimulate your "normal" ones. I personally found it easier to fast... However, I suppose that if you cannot or will not go without food, then the only allowed category is protein (as in, grilled fish or meat).

    As regards Ensure or other protein shakes, it seems their sugar (or "carb") content makes them unsuitable for the purpose of preparing for a PETscan. Here is an extract I found from this site (http://www.premieresurgical.net/wp-content/uploads/2015/11/Pet_Scan-1.pdf):

    "For the entire day prior to your PET/CT scan do not eat sugars or carbohydrates. Avoid items like bread, pastry, cereal, potatoes, pasta, rice, soy products, any vegetables, fruits, desserts, cakes, yogurt or cheese. The only beverage you should be drinking once you start the diet is "STRICTLY WATER ONLY". No milk, soft drinks, tonic or flavored water, juices, beer, alcoholic beverages or any canned protein shakes (e.g. Ensure). Avoid any processed meats like deli meats, sausage links or bacon. You may ONLY have pure protein meats (chicken, fish, beef or pork) and eggs.

    Nothing to eat or drink (except water) for at least 6 hours before your scan. This includes candy, gum, mints, cough drops, and Nicorette gum."

    Hope this answers your question.

    PBL

  • Rexmax
    Rexmax Member Posts: 55 Member
    edited July 2017 #55
    PBL said:

    Congratulations!

    Hello Lillian,

    You're already halfway through... How time flies!

    Regarding your upcoming PETscan, I would refer you to the instructions you were given.

    What I know (based on my readings AND on the instructions given to me before my own PETscans) is that you should not engage in any strenuous physical exercise starting the day before AND you should be on a complete fast (ONLY plain water allowed - that means NO flavored water, tea, coffee, soda) for at least six hours prior to your appointment.

    The reason for this is that the success of this imaging technique is based on the glucose avidity of cancer cells as compared to that of "normal", non-cancerous cells. Your cancer cells - if there are any clusters remaining at this point - will be all the more visible if they have been deprived of fuel (i.e. glucose or other "sugars") for several hours, as their gluttony will "light up" the screen against "normal", not-particularly-avid cells (which is why you should also refrain from strenuous exercise the day before).

    As I understand it, you do not particularly need to be on a high-protein diet - as long as you do not feed those cancer cells or stimulate your "normal" ones. I personally found it easier to fast... However, I suppose that if you cannot or will not go without food, then the only allowed category is protein (as in, grilled fish or meat).

    As regards Ensure or other protein shakes, it seems their sugar (or "carb") content makes them unsuitable for the purpose of preparing for a PETscan. Here is an extract I found from this site (http://www.premieresurgical.net/wp-content/uploads/2015/11/Pet_Scan-1.pdf):

    "For the entire day prior to your PET/CT scan do not eat sugars or carbohydrates. Avoid items like bread, pastry, cereal, potatoes, pasta, rice, soy products, any vegetables, fruits, desserts, cakes, yogurt or cheese. The only beverage you should be drinking once you start the diet is "STRICTLY WATER ONLY". No milk, soft drinks, tonic or flavored water, juices, beer, alcoholic beverages or any canned protein shakes (e.g. Ensure). Avoid any processed meats like deli meats, sausage links or bacon. You may ONLY have pure protein meats (chicken, fish, beef or pork) and eggs.

    Nothing to eat or drink (except water) for at least 6 hours before your scan. This includes candy, gum, mints, cough drops, and Nicorette gum."

    Hope this answers your question.

    PBL

    PET Scan

    Thanks for the info really appreciate it. I don't know what I would do without this great site! Will update with results after I see Onc on Thursday the 10th. Praying for good news....

  • PBL
    PBL Member Posts: 366 Member
    Looking forward to reading your update

    Hopefully with news from our friend "NED"!

    PBL

  • Evarista
    Evarista Member Posts: 336 Member
    Rexmax said:

    Upcoming PET Scan

    Hi y'all I'm halfway Thur my 6 cycles of R-Chop, and will be getting my PET Scan Aug 3rd. I know I need to be low carb,low sugar and high protein the day before however at the moment I cannot do any food as the taste of everything is just awful and makes me gag. I have been doing meal replacements and ensure by placing the straw all the to back of throat just to get it done. I found a high protein shake (30 gms) that has 1gm sugar and 5gm carb. Has anyone done shakes day before PET Scan ? Do you have to be high Protein for PET Scan? Thanks in advance for any advice..... Lillian.  By the way I'm from Arizona 

    PET scan today

    Good luck today, Lillian!

  • Rexmax
    Rexmax Member Posts: 55 Member
    edited August 2017 #58
    PET Update

    Dr really happy with PET scan there is only a very tiny tissue residual left on right side , nothing in lymph nodes, feels it's best to finish last 3 cycles of R-Chop, then 2yr maintenance every 8 weeks so this is good news to me! Have a great day y'all.....Lillian 

  • Evarista
    Evarista Member Posts: 336 Member
    edited August 2017 #59
    Rexmax said:

    PET Update

    Dr really happy with PET scan there is only a very tiny tissue residual left on right side , nothing in lymph nodes, feels it's best to finish last 3 cycles of R-Chop, then 2yr maintenance every 8 weeks so this is good news to me! Have a great day y'all.....Lillian 

    Great news!

    Lillian, this is wonderful news.  Very happy for you.  Hope that the dietary issues are improving and that the rest of your treatment goes smoothly.

  • PBL
    PBL Member Posts: 366 Member
    Rexmax said:

    PET Update

    Dr really happy with PET scan there is only a very tiny tissue residual left on right side , nothing in lymph nodes, feels it's best to finish last 3 cycles of R-Chop, then 2yr maintenance every 8 weeks so this is good news to me! Have a great day y'all.....Lillian 

    That's what we like to hear!

    It makes it all worthwhile, doesn't it?

    Keep up the good work!

    PBL

  • lindary
    lindary Member Posts: 711 Member
    good status

    Glad you got such good news Lillian. Finishing the treatments is always a good way to make sure the cancer has been fought back. I am about 18 months into the 2 year Rituxan maintenance. It does go quick and is nice to have a day to just relax.  LOL