Still in Shock--Wife Just Diagnosed w/ Non-Hodgkins B-Cell Follicular Lymphoma Stage IV

friendm7
friendm7 Member Posts: 6
Wife just diagnosed w/ Stage IV NHL (Subtype: B-Cell Follicular) on 12 Jul 10 and I am a complete mess. Looking for a support system to help get me and my family through this. I've been through just about every emotional state for the past 30 days since she went in for a regular checkup for what we thought was a muscle pull on her left side. Ended up being full fledge pnemonia, 1.6 litres of fluid in her left lung (which had to be drained) which was partially collapsed. Ran a ton of tests, PET scan, multiple CT scans, etc. and two different biopsies and ended up w/ this. Just took 30 days to finally prove it.

Treatment will start on Mon, 19 Jul w/ Rituxin and Bendomustine (sp?). I'm in the Air Force stationed at Hickam AFB Hawaii and the treatment is happening at Tripler Army Medical Center. Looking into humanitarian reassignment options back to Wright Patterson AFB OH (one hour from Columbus where we are both from and our parents reside).

Both of us our 39 years old...two girls (Ally/11 and Kyla/7).

Any words of advice to a new member...treatment options, cancer facilities in Hawaii (Honolulu) or Ohio (near Dayton or Columbus), which are better, etc. Or any encouraging words on expectations, how a spouse can help, how to deal w/ the dreaded "C" word w/ kids, etc.

Thank you in advance for your replies.

V/R
Mark Friend
«13

Comments

  • dixiegirl
    dixiegirl Member Posts: 1,043
    Scary
    I know this sucks.........BUT Lymphoma is very treatable and stage doesn't mean much of anything with NHL. Treatments are not fun, that's for sure but she CAN do this. I was 41 when diagnosed and it's ok to be worried my friend.

    Just be there for her when you can. My hubby was traveling during my bad days and sometimes all we had was a phone call...and it WAS enough. Cancer is hard and treatments aren't easy either. She may need some help during the bad times....or she can leave the housework for the times when she feels better.

    The waiting is by FAR the worst and 30 days isn't that uncommon. I was doing antibiotics and doc appts for 3 months.

    It's ok...you are in the right place! Have her come here too as well as the chat rooms.
    Take Care,
    Beth
  • merrywinner
    merrywinner Member Posts: 626
    I am so sorry.....
    But you have come to the right place. The people here are kind,compassionate and full of knowledge and experience. I don't want to overwhelm you with all sorts of information just now. I am not familiar with facilities in the areas you mentioned but know that there is much that can be done any many treatments. I don't know weather a second opinion is an option but is generally a good idea. Rituxan is usually one of the first choices and highly successful. Not sure what that second drug is. Good luck and tell your wife that we are here and want to help. I don't know about any others,but I have experience with the fluid in the lung thing. Mine was in the pleural space or the sack that the lung is in. Keep us posted and I'll send some prayers your way. Mary
  • COBRA666
    COBRA666 Member Posts: 2,401
    nhl question
    Mark, I have nhl stage 4 follicular also. Let us know more about your wifes case and we can help and guide you more accurately. Where are the tumors located? There is a lot of info on this site from the members and they will be your best friend . They know what you are going thru. They have all been there. I was there just a short time ago and I can relate to your being a mess. You feel like you are alone in this battle. You have come to te right place for info and support. Just a little bit of info. Its ok to check the latest updates from various sites, but don't get to involved in them. Some are old and out of date. They have a tendency to really confuse you. I went thru that before I was aware this forum was even on here. You will find the people here are really supportive and informative. John
  • allmost60
    allmost60 Member Posts: 3,178
    Still in shock....
    Hi Mark,
    I am new here also.I am 59, married, with 2 grown sons and 2 grandchildren. I live in Yakima, Washington. I was diagnosed on June-16th-10 with Follicular NHL...stage3...Grade 2...Type A. I have tumors in my left groin, abdomen and left side of my neck. This past Tuesday I had a bone marrow biopsy and currently waiting for the test results. I haven't started treatment yet and won't until we find out the results of the BMB. If the test results come back positive then I'll advance to a stage 4 which will be treated the same as stage 3(from what others here have told me). I am still a "mess" so don't feel alone. My hubby is also a "mess" and learning daily how to cope. I joined this group on July 8th and it has been a "God" send! Prior to joing I spent endless hours searching the net for information about NHL...NOT GOOD! Talk about Bing over-load. People here in this group are going through, or have gone through, what we..(your wife)and I are "about" to go through. Who better to ask questions of than those that have gone before us? You have definetely come to the right place and will be very happy here. I hope your wife will join you in support here.Right now I will not be much help to you for information on the cancer or treatments, but I sure can be supportive. Sounds like your wife will be getting started with treatment before me so I will be anxious to hear how she progresses...please share. We will get through this...together. My prayers are with you, your wife and family.
    Sue
  • onlytoday
    onlytoday Member Posts: 609 Member
    You and your wife
    My thoughts and prayers to you and your wife. Getting this diagnosis is so upsetting. I had a biopsy on May 17 and got my diagnosis on May 27. It IS so shocking and so scary but what I have learned is that NHL is extremely treatable and her's (Follicular) is one of the most common types and so there has been and will continue to be tons of research done for it. The treatment she will get is a good one, and is very effective at getting the patient into remission.

    Finding this site will prove to be a gift for you and for your wife. So much support and caring here not to mention a wealth of up to date info.My best to you both and just by being on here you already are doing all the right things. Just love her and support her and you all will get through this. Stay in touch.
  • Hoppy23
    Hoppy23 Member Posts: 26
    Hi Mark. I am very sorry
    Hi Mark. I am very sorry your wife and you have to go through this. My husband has been diagnosed with Follicular Lymphoma stage 4 last february too. Also B-cell. So I can TOTALLY understand what YOU must be going through. My husband finished 6 cycles of R-CHOP so far and he's doing well. There are some days he'd be totally out of it, but it IS doable. He's 44 and is otherwise healthy. I am sure your wife will be able to go through chemo with as little side effects as possible.

    If you need anything, even if it's just a talk. send me a message ANYTIME.
  • COBRA666
    COBRA666 Member Posts: 2,401
    Hoppy23 said:

    Hi Mark. I am very sorry
    Hi Mark. I am very sorry your wife and you have to go through this. My husband has been diagnosed with Follicular Lymphoma stage 4 last february too. Also B-cell. So I can TOTALLY understand what YOU must be going through. My husband finished 6 cycles of R-CHOP so far and he's doing well. There are some days he'd be totally out of it, but it IS doable. He's 44 and is otherwise healthy. I am sure your wife will be able to go through chemo with as little side effects as possible.

    If you need anything, even if it's just a talk. send me a message ANYTIME.

    6 rounds of r-chop
    Hoppy,
    How many rounds of chemo is your husband scheduled for? Some have 6 and others have 8. I am scheduled for 6 and just completed round 2. John
  • Hoppy23
    Hoppy23 Member Posts: 26
    COBRA666 said:

    6 rounds of r-chop
    Hoppy,
    How many rounds of chemo is your husband scheduled for? Some have 6 and others have 8. I am scheduled for 6 and just completed round 2. John

    He'll be having a total of 8
    He'll be having a total of 8 John. He had a CT scan after the 4th and his nodes and spleen were still enlarged, so his doctor said he'd get 8 . He had a PET scan doen a few days ago, but won't know anything until after he has another bone marrow biopsy. This BMB is scheduled for tomorrow and after we get the results for it and the PET scan, we'll know if he's in remission or not. I am praying for the best. ON the CT scan, the radiologist asked him to have an U/S too on the spleen because the lesions were not very clear on the CT scan. This time on the PET/CT scan, they didn't ask him for an U/S so I ma hoping this is a good sign.

    I'll update you all as soon as we know where he stands.

    When will your doctor make you have a PET scan? After round 3 or 4? A PET scan is better to tell if the lymphoma is active or not, but since we were paying for it out of pocket, hubby's doctor opted to make us go for the CT scan because it's a lot cheaper. The nodes could be enlarged but no active cancer, if you know what I mean.

    Good luck.
  • COBRA666
    COBRA666 Member Posts: 2,401
    Hoppy23 said:

    He'll be having a total of 8
    He'll be having a total of 8 John. He had a CT scan after the 4th and his nodes and spleen were still enlarged, so his doctor said he'd get 8 . He had a PET scan doen a few days ago, but won't know anything until after he has another bone marrow biopsy. This BMB is scheduled for tomorrow and after we get the results for it and the PET scan, we'll know if he's in remission or not. I am praying for the best. ON the CT scan, the radiologist asked him to have an U/S too on the spleen because the lesions were not very clear on the CT scan. This time on the PET/CT scan, they didn't ask him for an U/S so I ma hoping this is a good sign.

    I'll update you all as soon as we know where he stands.

    When will your doctor make you have a PET scan? After round 3 or 4? A PET scan is better to tell if the lymphoma is active or not, but since we were paying for it out of pocket, hubby's doctor opted to make us go for the CT scan because it's a lot cheaper. The nodes could be enlarged but no active cancer, if you know what I mean.

    Good luck.

    I really am not sure when I
    I really am not sure when I will have the scan. He probably said but being in the state of mind I was in I do not remember when he said. I have to go back after my next round for an appt. so I am sure he will schedule me then. Right now, my insurance is paying everything. Hope this ins. overhaul does not put a stop to that if you know what I mean. John
  • COBRA666
    COBRA666 Member Posts: 2,401
    COBRA666 said:

    I really am not sure when I
    I really am not sure when I will have the scan. He probably said but being in the state of mind I was in I do not remember when he said. I have to go back after my next round for an appt. so I am sure he will schedule me then. Right now, my insurance is paying everything. Hope this ins. overhaul does not put a stop to that if you know what I mean. John

    B cell
    Hoppy,
    When you say B-cell what is the grade? 1,2 or 3. Mine is indolent grade 1. John
  • Hoppy23
    Hoppy23 Member Posts: 26
    COBRA666 said:

    B cell
    Hoppy,
    When you say B-cell what is the grade? 1,2 or 3. Mine is indolent grade 1. John

    Grade 1 John. He was first
    Grade 1 John. He was first told it was grade 2 from the lymph node biopsy at one lab. Then we had the node checked in 2 other labs who said it was grade 1. BUT he has B-symptoms. he had them for almost a year prior to diagnosis.
  • COBRA666
    COBRA666 Member Posts: 2,401
    Hoppy23 said:

    Grade 1 John. He was first
    Grade 1 John. He was first told it was grade 2 from the lymph node biopsy at one lab. Then we had the node checked in 2 other labs who said it was grade 1. BUT he has B-symptoms. he had them for almost a year prior to diagnosis.

    grade 1
    Hoppy,
    Never had any of the b-symtoms. No night sweats,No weight loss, or Temp. I did notice when I was on the computer I would start to sweat for no apparent reason, but I had been doing that for years. Never woke up in the middle of the night sweaty though. My weight never changed excepted it would go up or down maybe 3-4 lbs., but basically stayed the same. Which symtoms did your husband have? John
  • Hoppy23
    Hoppy23 Member Posts: 26
    COBRA666 said:

    grade 1
    Hoppy,
    Never had any of the b-symtoms. No night sweats,No weight loss, or Temp. I did notice when I was on the computer I would start to sweat for no apparent reason, but I had been doing that for years. Never woke up in the middle of the night sweaty though. My weight never changed excepted it would go up or down maybe 3-4 lbs., but basically stayed the same. Which symtoms did your husband have? John

    John,
    He had almost all the

    John,
    He had almost all the known and unknown symptoms related to lymphoma. He had low grade fevers for a year, he had night sweats, fatigue and severe depression. His night sweats got crazier over time and we had to change his pajamas and sheets daily, he'd soak the pillows too. He also said he used to breath warm air. Like he had fever on the inside that didn't show on the thermometer.

    He also had SEVERE joint/bone/muscle aches for months and we thought it was rheumatic pains, or maybe from the very cold a/c, or from any other reason. he was seen by maybe 4 doctors, nobody suspected lymphoma. One doctor even told him it's something mental, and gave him a pill like prozac. He had shingles months ago too, and it was very odd at his age. When I saw how much pain he was in and nobody is doing anything (we even suspected swine flu at one stage), I just picked up the phone, called the phone directory and asked them to give me any doctor's number specialized in blood diseases or immunity diseases. They only gave me his current oncologist's number and the moment she put her hand on his armpit and found this enlarged node, she KNEW. Once he had that lymph node removed to be biopsied, ALL his symptoms were gone !!! His internal fever like was gone, he wasn't sweating and his body aches were gone too. Weird huh?

    Oh...for the year before diagnosis, his aches would be on and off...like they'd come for a week every month or every 3 weeks, he'd take antibiotics and feel better instantly. AT one point after diagnosis, one doctor told him how weird it was that cancer symptoms he had were relieved by taking antibiotics.

    When he had a CT scan to properly stage his cancer, ALL his lymph nodes were enlarged, and his spleen was too showing more than one lesion of cancer too. His Bone marrow tested positive as well, but we never knew how much of it was affected. I guess all that is what made his onc decide on the R-CHOP not R-CVP or Rituxan alone. His was an indolent kind but was EVERYWHERE.

    Hope that helps.
  • friendm7
    friendm7 Member Posts: 6
    COBRA666 said:

    nhl question
    Mark, I have nhl stage 4 follicular also. Let us know more about your wifes case and we can help and guide you more accurately. Where are the tumors located? There is a lot of info on this site from the members and they will be your best friend . They know what you are going thru. They have all been there. I was there just a short time ago and I can relate to your being a mess. You feel like you are alone in this battle. You have come to te right place for info and support. Just a little bit of info. Its ok to check the latest updates from various sites, but don't get to involved in them. Some are old and out of date. They have a tendency to really confuse you. I went thru that before I was aware this forum was even on here. You will find the people here are really supportive and informative. John

    John,
    5.9 x 3.7 cm mass

    John,

    5.9 x 3.7 cm mass encasing the abdominal aorta. Also, a 2.6 x 2.1 cm soft tissue mass in the mesenteric portion of the small bowel. Not sure if these masses are cancerous; however, removed four lymphnodes and conducted biopsy which proved the lymphoma. Docs saying the mass around the abdominal aorta is nearly impossible to get to...and it really doesn't matter as it won't change the treatment plan.

    Any/all advice is greatly appreciated.

    Mark
  • friendm7
    friendm7 Member Posts: 6
    allmost60 said:

    Still in shock....
    Hi Mark,
    I am new here also.I am 59, married, with 2 grown sons and 2 grandchildren. I live in Yakima, Washington. I was diagnosed on June-16th-10 with Follicular NHL...stage3...Grade 2...Type A. I have tumors in my left groin, abdomen and left side of my neck. This past Tuesday I had a bone marrow biopsy and currently waiting for the test results. I haven't started treatment yet and won't until we find out the results of the BMB. If the test results come back positive then I'll advance to a stage 4 which will be treated the same as stage 3(from what others here have told me). I am still a "mess" so don't feel alone. My hubby is also a "mess" and learning daily how to cope. I joined this group on July 8th and it has been a "God" send! Prior to joing I spent endless hours searching the net for information about NHL...NOT GOOD! Talk about Bing over-load. People here in this group are going through, or have gone through, what we..(your wife)and I are "about" to go through. Who better to ask questions of than those that have gone before us? You have definetely come to the right place and will be very happy here. I hope your wife will join you in support here.Right now I will not be much help to you for information on the cancer or treatments, but I sure can be supportive. Sounds like your wife will be getting started with treatment before me so I will be anxious to hear how she progresses...please share. We will get through this...together. My prayers are with you, your wife and family.
    Sue

    Know what you mean about the
    Know what you mean about the Bing over-load:) Only mine was Web-MD and google overload:) How was the bone marrow biopsy...heard that one was a killer. Good part is that it only lasts 30 minutes. Trina hasn't had that done yet but it has been mentioned.

    Treatment starts on Monday so I'll let you know how it goes. Now, if I can only get my wife to join us on here. Up to this point, she's letting me do all of the research. Doesn't really want to read much about it. Perhaps, it's because she has enough on her mind already. I figure with due time she will want to know more. Right now, she's just leaning on me for the information.

    God bless...you are correct, we will get through this TOGETHER.
    Mark
  • friendm7
    friendm7 Member Posts: 6
    Hoppy23 said:

    John,
    He had almost all the

    John,
    He had almost all the known and unknown symptoms related to lymphoma. He had low grade fevers for a year, he had night sweats, fatigue and severe depression. His night sweats got crazier over time and we had to change his pajamas and sheets daily, he'd soak the pillows too. He also said he used to breath warm air. Like he had fever on the inside that didn't show on the thermometer.

    He also had SEVERE joint/bone/muscle aches for months and we thought it was rheumatic pains, or maybe from the very cold a/c, or from any other reason. he was seen by maybe 4 doctors, nobody suspected lymphoma. One doctor even told him it's something mental, and gave him a pill like prozac. He had shingles months ago too, and it was very odd at his age. When I saw how much pain he was in and nobody is doing anything (we even suspected swine flu at one stage), I just picked up the phone, called the phone directory and asked them to give me any doctor's number specialized in blood diseases or immunity diseases. They only gave me his current oncologist's number and the moment she put her hand on his armpit and found this enlarged node, she KNEW. Once he had that lymph node removed to be biopsied, ALL his symptoms were gone !!! His internal fever like was gone, he wasn't sweating and his body aches were gone too. Weird huh?

    Oh...for the year before diagnosis, his aches would be on and off...like they'd come for a week every month or every 3 weeks, he'd take antibiotics and feel better instantly. AT one point after diagnosis, one doctor told him how weird it was that cancer symptoms he had were relieved by taking antibiotics.

    When he had a CT scan to properly stage his cancer, ALL his lymph nodes were enlarged, and his spleen was too showing more than one lesion of cancer too. His Bone marrow tested positive as well, but we never knew how much of it was affected. I guess all that is what made his onc decide on the R-CHOP not R-CVP or Rituxan alone. His was an indolent kind but was EVERYWHERE.

    Hope that helps.

    Wow...that's what's crazy
    Wow...that's what's crazy about this. My wife had absolutely none of those symptoms. No enlarged lymph nodes in the neck, no night sweats, no fever, no weight loss, etc. No kidding, she went in for a muscle pull and we end up w/ this. Unbelievable...truly makes you refocus your priorities on what's truly important.

    Hoppy, added you to my friend's list...looks like we have alot in common.

    Thanks
    Mark
  • allmost60
    allmost60 Member Posts: 3,178
    friendm7 said:

    Know what you mean about the
    Know what you mean about the Bing over-load:) Only mine was Web-MD and google overload:) How was the bone marrow biopsy...heard that one was a killer. Good part is that it only lasts 30 minutes. Trina hasn't had that done yet but it has been mentioned.

    Treatment starts on Monday so I'll let you know how it goes. Now, if I can only get my wife to join us on here. Up to this point, she's letting me do all of the research. Doesn't really want to read much about it. Perhaps, it's because she has enough on her mind already. I figure with due time she will want to know more. Right now, she's just leaning on me for the information.

    God bless...you are correct, we will get through this TOGETHER.
    Mark

    Give her time...
    Hi Mark,
    Just give your wife some time to adjust. She's fortunate you are comfortable in doing the research. My husband was so afraid the first week we found out that he wouldn't even say the word cancer.He is fine now and actually has become very protective of me and proactive with the insurance co, clinic appts, bills etc. Yes...the BMB was pretty rough for me and unfortunately took a little longer because of dry marrow issues. I've moved on and have put it out of my mind. My hip is hardly sore today so that makes me happy. I'll be thinking good positive thoughts for your wifes treatment to go well on Monday. Keep us posted.
    Take care...Sue
  • cookingirl
    cookingirl Member Posts: 183
    NHL - B cell, Follicular, stage 4
    Hi - 67 year old female from FL. Diagnosed with the exact symptoms last Sept. and on advice of Moffitt Cancer Center in Tampa and compassionate, exceptional Cancer group of 9 Oncologists on the East coast where I live, we went with "watchful waiting" for 9 months til late May. Had I started treatment with my tumors deep in my abdominal area beneath the small intestine, my good cells which were trying to fight it would have been destroyed. I had NO symtoms and my 3 cm tumor was found accidently on a CT scan for something else. MAKE sure with bone marrow biopsies you have Vercet given - you have no memory or pain - wouldn't think of doing without that but didn't like hearing I was stage 4. In late May, suddenly with no warning, found on CT's we did every 3 months, it had grown like a vengance to 12 cm so started Chemo right away R-CVP. First chemo was bad but just had 3rd this week and gets easier each time - heard it's usually the opposite. Half way check with CT tomorrow to see if the drugs are shrinking tumors - a bit nervous about that. Must be a much milder Chemo than CHOP which I'll do after Remission when it returns. Will be on Rituxon for 2 years to prolong - IV in port every 3 months. Very expensive Immunotherapy - $6,000 a bag. Insurance is paying it all - thankful to have Aetna but worried about new health plan in Jan. and how it will affect it. No surgery or radiation for me - can't be removed as deep as it is. Good luck, keep up positive thoughts and if you're a Christain, have hundreds praying for you!
  • allmost60
    allmost60 Member Posts: 3,178

    NHL - B cell, Follicular, stage 4
    Hi - 67 year old female from FL. Diagnosed with the exact symptoms last Sept. and on advice of Moffitt Cancer Center in Tampa and compassionate, exceptional Cancer group of 9 Oncologists on the East coast where I live, we went with "watchful waiting" for 9 months til late May. Had I started treatment with my tumors deep in my abdominal area beneath the small intestine, my good cells which were trying to fight it would have been destroyed. I had NO symtoms and my 3 cm tumor was found accidently on a CT scan for something else. MAKE sure with bone marrow biopsies you have Vercet given - you have no memory or pain - wouldn't think of doing without that but didn't like hearing I was stage 4. In late May, suddenly with no warning, found on CT's we did every 3 months, it had grown like a vengance to 12 cm so started Chemo right away R-CVP. First chemo was bad but just had 3rd this week and gets easier each time - heard it's usually the opposite. Half way check with CT tomorrow to see if the drugs are shrinking tumors - a bit nervous about that. Must be a much milder Chemo than CHOP which I'll do after Remission when it returns. Will be on Rituxon for 2 years to prolong - IV in port every 3 months. Very expensive Immunotherapy - $6,000 a bag. Insurance is paying it all - thankful to have Aetna but worried about new health plan in Jan. and how it will affect it. No surgery or radiation for me - can't be removed as deep as it is. Good luck, keep up positive thoughts and if you're a Christain, have hundreds praying for you!

    Vercet...
    Thank you soooo much for this information. I will definetely run Vercet by my doctor and ask her if I am a candidate for this. If she says NO...she better have a darn good reason, because I WON"T have a BMB done again without sedation!!! I REALLY like the idea of "No memory and NO pain"...oh yea...I'm down for that!!!!
    Sue
  • kelly02
    kelly02 Member Posts: 8
    FriendM7 Mark
    Hi my name is Kelly, and this will sound crazy but my sister is the fitness director at Hickam. Her name is Bonnie Jo Bentley. look her up. i was diagnosed with fullicular cancer in march of this year. Right now I am doing that watch and wait method however the cocktal (i like to call it) that you mentioned Rituxin and Bendimustine is one of three choice that i was just given. I just completed my second Pet scan and am sure that i will soon be starting treatment. My husband Jerry and I are learning as we go. I also have two boys however mine are old one is a Marine and one is a senior this year. I do alot of praying and alot of reading. I have a team of doctors at Hershey Medical Center part of Penn State University. They tell me it is VERY treatable but there is no cure. I had my bone marrow test they gave me 6 shots to num me, make sure they num her really good, if you dont ask they wont give it. the test came back that its also in my bone marrow. I will tell you to not believe everything you read on the net. I stay on this site only. there are alot of people you can talk with. I will chat with you if you would like and we can learn together and my sister I just spoke with her and she said to stop by and talk you two can go through this together as well. She is coming to see me this week and will be back aug 3. I will also tell you with me I have good and bad days there are times I yell at Jerr and cry alot. ask why me what did i do etc.. the best thin is he listens and gets me through it. Thats that best part just listening, God bless you and your family and pleaes stop and see my sister

    much love Kelly