Diagnosis

Chrisjag
Chrisjag Member Posts: 18
in Lymphoma (Hodgkin and Non-Hodgkin) #1

After a very long month, we finally have a diagnosis. My husband has Hodgkins lymphoma. Although he told us in September that this was what he thought it was, it was very hard to have it confirmed. The main mass is in his lung, and the least invasive biopsy came back negative. We had a biopsy done on some swollen lymph nodes under his arm, and they confirmed it. We have not done any staging yet, but he is set to start treatment in 10 days. He has 8 procedures that need to be completed before then. The doctor said it is classic hodgkins, but when I looked it up, that is also broken into subgroups (I think). The doctor said it is a less common lymphoma and is more aggressive. It is devistating, but now we have some answers and can start our new adventure. Any help/hope/stories with hodgkins would be appreciated (or any hopeful stories for that matter).

Comments

  • Joemory21
    Joemory21 Member Posts: 41
    #2
    hi

    sorry you have to be here. the week after diagnosis and before treatment was a wild one it was a muga, pet, pft and lots of blood work kind of week. im a few months out of treatment and doing better everyday. i had nlphl.

    best of luck.

    jonathan

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #3
    Sorry about diagnosis

    Chrisjag,

    I am sorry that your husband has had HL confirmed. I recently put a link regarding biopsies on a post, the link is titled something like "Node in Groin Area," or something similiar.  It is not uncommon for needle biopsies to come back false negative, as you have learned.  ( Found it:  http://www.bcshguidelines.com/documents/Lymphoma_diagnosis_bcsh_042010.pdf  )

    Hodgkins Lymphoma is subdivided into five major subtypes, although I suspect there are even more, very rare subdivisions.  Non-Hodgkins(NHL), which is much more common than Hodgkins, is divided into over 25 routine subtypes.  (Around 70% of all newly-diagnosed cases of Lymphoma are NHL.)  So there is a lot of variation out there.

    Since he has lung involvement, I would think he is stage 4 (in Lymphoma, the definition, if you will, of Stage 4 is to have the disease in a non-lymphatic organ, like the lungs).  The most common chemo combination therapy is called abvd, but if he is late term with some very aggressive strain, the doctors may use something different.  Depending on his age, the doctors may want to go ahead with stem cell tranplantation, although SCT is relatively rare as a first-line therapy in HL, except when the cancer is very dangerous.

    Please do update us, since whatever your husband has, some of the members here have had it also (I did not have his strain, since mine is characterized as very indolent, or slow-moving).

    Be aware that most lymphomas, even in stage 4, are very treatable.

    max

     

  • Chrisjag
    Chrisjag Member Posts: 18
    #4
    Thanks guys. We did the MUGA

    Thanks guys. We did the MUGA scan today and got some blood work. The bone marrow and PET scan are scheduled for next week. I knew from reading many people's stories that it was possible that his symptoms may become worse before we begin treatment, but I guess knowing isnt enough to be prepared. He is having drenching night sweats every night, super tired, sore, etc. I cant wait to get started!

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #5
    Chrisjag said:

    Thanks guys. We did the MUGA

    Thanks guys. We did the MUGA scan today and got some blood work. The bone marrow and PET scan are scheduled for next week. I knew from reading many people's stories that it was possible that his symptoms may become worse before we begin treatment, but I guess knowing isnt enough to be prepared. He is having drenching night sweats every night, super tired, sore, etc. I cant wait to get started!

    Moving toward wellness

    Chrisjag,

    Fatigue is the most universal symptom of lymphoma, shared by almost everyone.  Chemo can intensify this, but the effect of that passes after treatment ends. Night sweats are referred to as a "B" symptom, and can be a sign of more aggressive disease.

    I am glad things are moving along, and that his movement toward wellness is about to begin soon.  Does MUGA refer to U GA Medical School in Athens ? I live within 50 miles of there. They saved a cousin of mine decades ago, who had taken a round from a deer rifle through the abdomen; no one thought he had a chance, but he is totally healthy today, 40 years later. A great hospital.

    max

     

  • Chrisjag
    Chrisjag Member Posts: 18
    #6
    Max Former Hodgkins Stage 3 said:

    Moving toward wellness

    Chrisjag,

    Fatigue is the most universal symptom of lymphoma, shared by almost everyone.  Chemo can intensify this, but the effect of that passes after treatment ends. Night sweats are referred to as a "B" symptom, and can be a sign of more aggressive disease.

    I am glad things are moving along, and that his movement toward wellness is about to begin soon.  Does MUGA refer to U GA Medical School in Athens ? I live within 50 miles of there. They saved a cousin of mine decades ago, who had taken a round from a deer rifle through the abdomen; no one thought he had a chance, but he is totally healthy today, 40 years later. A great hospital.

    max

     

    The MUGA scan was to test his

    The MUGA scan was to test his heart functioin. I just looked it up. It stands for multigated acquisition scan. The oncologist said he had to have it done because of the effects of the chemo on the heart. I read that the night sweats are b symptoms also and he has other symptoms off that horrible list. The doctor did say that his was more aggressive. I know that he gets to start treatment in one week from tomorrow, but it cant get here fast enough. It seems that so many changes are happening since we found out. Is it crazy for us to want to start chemo? This is so confusing.

  • Shoopy
    Shoopy Member Posts: 210
    #7
    Chrisjag said:

    The MUGA scan was to test his

    The MUGA scan was to test his heart functioin. I just looked it up. It stands for multigated acquisition scan. The oncologist said he had to have it done because of the effects of the chemo on the heart. I read that the night sweats are b symptoms also and he has other symptoms off that horrible list. The doctor did say that his was more aggressive. I know that he gets to start treatment in one week from tomorrow, but it cant get here fast enough. It seems that so many changes are happening since we found out. Is it crazy for us to want to start chemo? This is so confusing.

    Aggressive NHL

    Chris,

    I have NHL...specifically diffused large B cell lymphoma.  I can attest to the fact that it can move quickly and seems like an eternity before you start chemo.  I actually talked my oconologist into starting chemo 2 days earlier than originally planned.  I will tell you this...once he starts receiving the chemo you will start to notice the difference.  Stay patient...talk to your doctors...it will be OK.

    And...it's not crazy for you to want chemo...i think most of can also attest to that!

    Karl

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #8
    Shoopy said:

    Aggressive NHL

    Chris,

    I have NHL...specifically diffused large B cell lymphoma.  I can attest to the fact that it can move quickly and seems like an eternity before you start chemo.  I actually talked my oconologist into starting chemo 2 days earlier than originally planned.  I will tell you this...once he starts receiving the chemo you will start to notice the difference.  Stay patient...talk to your doctors...it will be OK.

    And...it's not crazy for you to want chemo...i think most of can also attest to that!

    Karl

     

    Totally natural

    Like Shoopy, I agree that it is perfectly natural to want to get the chemo flowing.  I also was going to have the heart function test, but had just had a stress test from a cardiologist, so they just used that instead.  Sorry to not know the acronym.   Some chemo drugs, like Adriamycin, can (very rarely) damage heart muscle.   He will also most likely get a lung volume test.  CHOP (common for NHL) and ABVD (common for HL)m both contain Adriamycin, which is sometimes called by one of its other names, Doxorubicine (see link).  Since you said he has some form of HL, it sounds like they most likely are checking him out to start ABVD, which is what I received.

    You did not mention it, but I HIGHLY recommend that he get a chest port, and in fact many cancer centers require them for certain types of chemo drugs.  Installation of the port is a very quick and safe proceedure.

     

    http://chemocare.com/chemotherapy/drug-info/adriamycin.aspx

     

    max

  • Chrisjag
    Chrisjag Member Posts: 18
    #9
    Thanks guys. We are at the

    Thanks guys. We are at the hospital now, so hopefully we can start treatment early! The reason it is not supposed to start until next Monday is because we have so many procedures to do. We will be getting a port put in, we also need the bone marrow biopsy, PET scan, lung function test, and he needs to get the fluid drained from his lungs. Now that we are admitted, hopefully these procedures can happen quickly. If they do, we will start the treatments right away. We still dont know what stage it is, but the oncologist said that the treatment will be the same regardless. So, we can start before we get the results back.

  • allmost60
    allmost60 Member Posts: 3,178 Member
    #10
    Chrisjag said:

    Thanks guys. We are at the

    Thanks guys. We are at the hospital now, so hopefully we can start treatment early! The reason it is not supposed to start until next Monday is because we have so many procedures to do. We will be getting a port put in, we also need the bone marrow biopsy, PET scan, lung function test, and he needs to get the fluid drained from his lungs. Now that we are admitted, hopefully these procedures can happen quickly. If they do, we will start the treatments right away. We still dont know what stage it is, but the oncologist said that the treatment will be the same regardless. So, we can start before we get the results back.

    Stressful time...

    Hi Chris,

     My heart goes out to you knowing how stressful the days are leading up to chemo treatment. I remember feeling like I was in a whirlwind running from one place to another getting tests done. Tumor biopsie, heart test, stress test, bone marrow biopsie, port placement...I thought I would lose my mind before I started chemo. Hopefully with your husband being admitted to the hospital the remaining tests will get done quickly. I will keep you both in my prayers. It's easier said than done, but try to take one day at a time and stay as stress free as possible. God bless you both. Best wishes...Sue

    (Follicular NHL-stg3-grd2-typA-Dx 6/10-age 63) In remission

  • Chrisjag
    Chrisjag Member Posts: 18
    #11
    allmost60 said:

    Stressful time...

    Hi Chris,

     My heart goes out to you knowing how stressful the days are leading up to chemo treatment. I remember feeling like I was in a whirlwind running from one place to another getting tests done. Tumor biopsie, heart test, stress test, bone marrow biopsie, port placement...I thought I would lose my mind before I started chemo. Hopefully with your husband being admitted to the hospital the remaining tests will get done quickly. I will keep you both in my prayers. It's easier said than done, but try to take one day at a time and stay as stress free as possible. God bless you both. Best wishes...Sue

    (Follicular NHL-stg3-grd2-typA-Dx 6/10-age 63) In remission

    Thanks Sue, We were losing

    Thanks Sue, We were losing our minds, but now that we are here it is going well. All of the tests will be done here. We keep getting suprises. "your biopsy will be today. dont eat. well go ahead and eat because it will be tomorrow." Lol. They are treating us well though. Our main concern (well besides the actual lymphoma) was the pain he was experiencing from the plueral effusion. He had 2.2 liters removed today and is feeling much better. Sore when he breathes in and where they went in, but they said to expect that. He said it is way better than the previous feeling. Taking one day at a time is easier said than done, but its getting better. :)

  • jimwins
    jimwins Member Posts: 2,107
    #12
    Chrisjag said:

    Thanks Sue, We were losing

    Thanks Sue, We were losing our minds, but now that we are here it is going well. All of the tests will be done here. We keep getting suprises. "your biopsy will be today. dont eat. well go ahead and eat because it will be tomorrow." Lol. They are treating us well though. Our main concern (well besides the actual lymphoma) was the pain he was experiencing from the plueral effusion. He had 2.2 liters removed today and is feeling much better. Sore when he breathes in and where they went in, but they said to expect that. He said it is way better than the previous feeling. Taking one day at a time is easier said than done, but its getting better. :)

    Hi Chris and welcome to the site.

    I've been out of town and trying to catch up on the site.  I hope your husband is doing well and update us when you can. You guys are not alone here :).

    Hugs and positive thoughts,

    Jim

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