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

A year ago my husband got a cough that just wouldnt go away. He went to urgent care and they did an xray. They prescribed him a steriod because they said he had pneumonia. In December it was back again, so they treated him as they did in September, excluding the xray. He found a new primary care doctor and was referred to a pulminary specialist.  The specialist said there are 3 reasons a person coughs:  asthma, nasal, or stomach. He did the asthma test and found he was borderline for being borderline asthmathic. So, almost boarderline. He gave him asthma meds, and scheduled a 1 month follow-up. During the next 8 or 9 monthly visits he was prescribed nasal spray eventhough he didnt see a concern for it and prilosec just incase it was acid reflux.

Tuesaday morning he couldnt breathe and his chest hurt, so he went to urgent care before work. They ordered a chest xray and found over 2 liters of fluid around his lungs. They transproted him to emergency. They did a ct scan and found a mass in his left lung.  They also removed the fluid and did a biopsy, blood test and asked tons of questions.  We wont get the biopsy back until later this week, but they said they are pretty sure it is lymphoma.  He is experiencing drenching night sweats, a slight fever, coughing, and sometimes itchiness on his arms.

We meet with the oncologist this Thursday. What are some questions I should ask? I never even heard of lymphoma until last Wednesday. He is 36, but we are done having kids. I dont even know where to begin. 

 

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  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #2
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    Newbie

    First of all welcome to the site. There are so many caring people here. Some have learned from experience and others thru their research. Some thru a little of both. You know, I never heard of Lymphoma either until I was diagnosed in 2010. Follicular type. I always heard it as Hodgkins Disease before that time. Keep in mind it is very treatable. It is getting to the place it is considered a chronic disease. As far as questions you want to ask there will be more test to go thru to determine what exact type, what stage it is if it is Lymphoma. They will want to do a Bone Marrow Biopsy to help in determining the stage. That is when you are going to bombard the Dr. with questions.The drenching night sweats and itching is a sign of Lymphoma, but that can be signs of other issues as well. They can not say for sure what is going on as far as Lymphoma until they get the biopsy results. It is good they are leaning in that direction because so many Drs. seem to avoid having people checked for Lymphoma. If it comes back positive ask the Dr. type, stage and what is going to be the treatment. There is no use in asking where it came from because they do not know. You can bet it is environmental though. Keep us informed as to what happens. John 

  • Rocquie
    Rocquie Member Posts: 869 Member
    #3
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    Welcome

    Hi Chrisjag, I'm sorry to hear that your husband is sick and has been suffering for so long. Ditto on the never hearing of lymphoma prior to my dianosis.

    Your husband's case sounds amazingly similar to mine. In the beginning, I was told I had an upper respiratory infection. Eventually, I was told I probably had asthma and was given an albuterol inhaler.  I was also told I had a mass in my left lung, which was not technically correct.

    My problem was that my spleen was so swollen, from the lymphoma, that it was pressing on my lung. My lung was only half aerated, so the "mass" was actually the lung being crushed in on itself. I also had fluid drained from around the lung. The fluid was not malignant.

    Not being able to breathe properly is very frightening and affects so many things. My energy level was flagging by the day. The lack of oxygen was causing heart palpatations. I had trouble sleeping.

    I can't really advise you on what questions to ask the oncologist. But I can tell you that you will be bombarded with information and medical terms you don't know. Take notes. Ask the doctor to explain things you don't understand. Ask him/her how to spell things. Ask for copies of all lab results, biopsies, and scans. You have the right to this information.

    I really can't emphasize enough the value of taking notes. It is one of the greatest services you can do for your husband right now. I wouldn't know half what I do about my disease if it weren't for my husband's copious notes. Trust me, you will ask a question and by the time you get home you won't know the answer if you don't write it down. I also think it keeps medical staff on their toes when you sit there right in front of them taking notes and asking for copies of reports.

    Your husband doesn't feel well and "can't hear" a lot of what the doctor says. You can be his advocate and it will also give you a job in the matter, rather than feeling helpless and afraid.

    Please know that lymphoma is very treatable and not like other types of cancer. I have been in remission for 7 months. I feel good and I can breathe!!

    My thoughts and prayers are with you at this time,

    Rocquie

     

     

     

     

  • illead
    illead Member Posts: 884 Member
    #4
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    Hi Chris

    I ditto everything John and Roquie said.  Roquie is right in keeping notes.  Not only the patient but the spouse forgets what happened when, so be sure to date everything too.  We also ask for the "doctor's notes".  I am writing because I was in your shoes.  I am the wife.  I know exactly how you feel and how scared you are.  If it is lymphoma, the symptoms are as you said.  They may get worse though, but please don't get too upset.  My husband also had very high fevers and rigors (extreme chills with uncontrollable shaking).  This was a few days after diagnosis and before any treatment started though.  As soon as he had his first chemo all of that went away. Try to stay level headed and like the others have said, lymphoma is very treatable and oftentimes curable.  It sounds like your husband is in good hands finally.  If it is cancer, please be comforted to know that oncologists and nurses are very dedicated and kind and helpful.  We rarely, if ever, have heard likewise.  You will be in very caring hands.  BTW, my husband is now almost 2 years in remission and feels better than he did before, so there is a big bright light at the end of the tunnel.  Please come here anytime, that is why we are all here.  We have been there and now we want to help others.  Any thought or question is an important one, please know that.   Hope this helps, and know we all care.      Becky

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