Need information please

Avp1234
Avp1234 Member Posts: 2
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
In early Nov. my mother was diagnosed with Colon cancer and had sucessful surgery 3 weeks later. The week of my mother's surgery, my dad was diagnosed with non hodgkins lymphoma, so needless to say, my whole life has been turned upside down. When he was 1st diagnosed, he didn't feel sick. He has been to the doctor and had the scans, bloodwork, bone marrow tests..etc. and now we are all sitting around waiting. During the last week, it seems as though his mental and physical health has went down drastically. He has developed a cough, is having trouble swallowing and does not have an appetite. I am worried sick. He has a large tumor on his trachea and it is in the lymph nodes on the right side of his neck. I have been reading about this disease, and I have read different things about the survival rate. Somewhere I read that he has between 6-8 years left, but then I also read that if he goes into remission it is considered gone. He is 72 years old . Any info on this disease would be greatly appreciated. Sorry my post was so long.

Amy

Comments

  • mina
    mina Member Posts: 1
    #2
    Amy, I was diagnised with Non-Hodgkins in Nov of 1997. I was 27yrs and my tumor was on my left lung, heart, aorta, and sternum. I underwent chemo for 6 months (CHOP) and radiation daily for thirty days. I've been in remission since 1998. I will not tell you that it was easy but I will tell you that I thank God every day I get to see my little girls again. My Dr. told me early on that if I had to pick a cancer non-hodkins was the easiest to fight. I had one reoccurance in 1998 of a second tumor but through pray and faith God removed it without any further treatment. If I had to go through it again I would! Treatment was owful but living is worth it! I under went two surgeries to try to remove my tumor but as I mentioned, the location of the tumor made the surgeries unsuccessful. The Doctor was only able to remove enough of the tumor to biopsy. I have had severe problems with choking and nerve damage to my esphagus since my radiation. I constrict and therefore choke on everything that enters my throat. Keeping praying and stand by your father as he begins this new journey.

    Melinda
  • mamacasucci
    mamacasucci Member Posts: 3
    #3
    Hi, Amy. I am sorry that you have been hit with the illness of both your parents at the same time. Please be sure that you take very good care of yourself at this time, because you will need to stay strong and healthy for them. It will be a tough road. Do research endlessly. Learn all that you can about both their diseases, this will help tremendously as you communicate with your parents and their medical teams. I was diagnosed this past October with non-Hodkins lymphoma; there are several types of NHL, and you will need to find out what type that your Dad has, as well as what "stage" his cancer is in. I have follicular lymphoma and diffuse large b-cell lymphoma (the follicular has partially "transformed" into DLBC lymphoma). Follicular is very slow growing and often is treated, believe it or not, by waiting to see what it will do. On the other hand, DLBC is a very fast growing lymphoma and requires treatment as soon as possible. I am being treated with what is known as R-CHOP and currently am taking my third treatment (I most likely will have to have 8, depending upon results of my next PET scan the end of January). I don't want to overwhelm you with info at this time, it's best to wait and see how your Dad is diagnosed. Please keep me posted, and if I can be of any help let me know. For now, please be sure you take care of yourself; eat well, get plenty of rest, take a good vitamin, etc. This will be a tough road, but you already sound ready and willing to stand by your parents and do whatever you can. Good luck.
  • Avp1234
    Avp1234 Member Posts: 2
    #4
    Thank you both so much for your advice. I never realized how hard it would be to deal with this, and I think it will help to talk with other people that are going through this, and of course the best education I can get is from people like you. Last night his coughing and breathing became worse, so his oncologist worked him in this morning and we found out the results of his tests. The bone marrow test and all his major organs are clear. They feel as if it is all mostly around his neck and throat. It is the Large B Cell, please forgive my terminology, I'm new at this, and the doctor says that it is between a stage 2 and 3. He started him on a Steroid..something that started with a "p", preta..something, and we are taking him tomorrow to have his port put in. He will start his chemo, the doctor called it "chop" friday. Lymphoma is a very scary thing and I guess you would say it has totally threw me for a loop. I am very sorry for what you both have been through, and continue to have to go through. I have had to watch my dad since he has been diagnosed, and it is heartbreaking to see how scared and depressed he is. It is always good to hear sucess stories, I guess that is what I'm looking for to ease my mind, and I agree with Melinda that God and Prayer will get us through this.

    Amy
  • JanetSL
    JanetSL Member Posts: 1
    #5
    Avp1234 said:

    Thank you both so much for your advice. I never realized how hard it would be to deal with this, and I think it will help to talk with other people that are going through this, and of course the best education I can get is from people like you. Last night his coughing and breathing became worse, so his oncologist worked him in this morning and we found out the results of his tests. The bone marrow test and all his major organs are clear. They feel as if it is all mostly around his neck and throat. It is the Large B Cell, please forgive my terminology, I'm new at this, and the doctor says that it is between a stage 2 and 3. He started him on a Steroid..something that started with a "p", preta..something, and we are taking him tomorrow to have his port put in. He will start his chemo, the doctor called it "chop" friday. Lymphoma is a very scary thing and I guess you would say it has totally threw me for a loop. I am very sorry for what you both have been through, and continue to have to go through. I have had to watch my dad since he has been diagnosed, and it is heartbreaking to see how scared and depressed he is. It is always good to hear sucess stories, I guess that is what I'm looking for to ease my mind, and I agree with Melinda that God and Prayer will get us through this.

    Amy

    Amy,
    I can only imagine the worry that you have going through... it can feel overwhelming as there is so much information to understand. As a recent survivor of Non-Hodgins lymphoma,large B Cell diffuse Intravascular and having gone through 6 treatments of Rituxin plus CHOP, 3 lumbar puncture methotrexate treatments and an autologous stem cell transplant within the last 6 months -- I encourage you and your family to be as positive as possible. The great battle to survive cancer is to realize that it is not necessarily a death sentence and there is HOPE! Mental attitude -- often in the form of faith and spiritual strength is essential in healing oneself with the help of medical science. I urge you to read inspiring stories, look for the opportunity to grow in appreciation for the blessings in life and seek the strength of a higher power-- whatever that belief may be. Please don't get caught up in the negativity of 'the odds' -- they steal hope.... people beat the odds all the time. We can often will ourselves to die or live. There are great books available -- Dr. Bernie Siegel and others. We can choose how to live so each day will count -- whatever the length of our lives. Seek support and surround yourself with positive people. You will be amazed by the goodness of people and this alone will bring strength. God bless and believe. :)
  • rockfam
    rockfam Member Posts: 2
    #6
    JanetSL said:

    Amy,
    I can only imagine the worry that you have going through... it can feel overwhelming as there is so much information to understand. As a recent survivor of Non-Hodgins lymphoma,large B Cell diffuse Intravascular and having gone through 6 treatments of Rituxin plus CHOP, 3 lumbar puncture methotrexate treatments and an autologous stem cell transplant within the last 6 months -- I encourage you and your family to be as positive as possible. The great battle to survive cancer is to realize that it is not necessarily a death sentence and there is HOPE! Mental attitude -- often in the form of faith and spiritual strength is essential in healing oneself with the help of medical science. I urge you to read inspiring stories, look for the opportunity to grow in appreciation for the blessings in life and seek the strength of a higher power-- whatever that belief may be. Please don't get caught up in the negativity of 'the odds' -- they steal hope.... people beat the odds all the time. We can often will ourselves to die or live. There are great books available -- Dr. Bernie Siegel and others. We can choose how to live so each day will count -- whatever the length of our lives. Seek support and surround yourself with positive people. You will be amazed by the goodness of people and this alone will bring strength. God bless and believe. :)

    intravascular large B cell lymphoma
    Hi Janet,
    I appreciate your post. I noticed it was from a few years ago, so I was wondering if you have any more updates to share on your journey. My dad was just diagnosed with this a few weeks ago, and had his first round of R-CHOP on Thursday.
    Thank you,
    Molly
  • rockfam
    rockfam Member Posts: 2
    #7
    Avp1234 said:

    Thank you both so much for your advice. I never realized how hard it would be to deal with this, and I think it will help to talk with other people that are going through this, and of course the best education I can get is from people like you. Last night his coughing and breathing became worse, so his oncologist worked him in this morning and we found out the results of his tests. The bone marrow test and all his major organs are clear. They feel as if it is all mostly around his neck and throat. It is the Large B Cell, please forgive my terminology, I'm new at this, and the doctor says that it is between a stage 2 and 3. He started him on a Steroid..something that started with a "p", preta..something, and we are taking him tomorrow to have his port put in. He will start his chemo, the doctor called it "chop" friday. Lymphoma is a very scary thing and I guess you would say it has totally threw me for a loop. I am very sorry for what you both have been through, and continue to have to go through. I have had to watch my dad since he has been diagnosed, and it is heartbreaking to see how scared and depressed he is. It is always good to hear sucess stories, I guess that is what I'm looking for to ease my mind, and I agree with Melinda that God and Prayer will get us through this.

    Amy

    your dad
    Hi Amy,
    How is your dad doing?
    My dad was just diagnosed..
    Molly

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