Non-Hodgkins Lymphoma

kaylennon
kaylennon Member Posts: 1
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
My 23 year old daughters has been diagnosed with Non-Hodgkins Lymphoma, small cell, non-cleaved, stage III-B. She is currently in Round II of chemotherapy and is having a very difficult time with the nausea, etc. The chemo is very intensive and she starts a new phase every 21 days. She needs 8 rounds and there are 2 phases of each round; IA, IB, IIA, IIB, ec.

If someone out there has also had this form of Lymphoma, please contact me. I would really like to hook up with someone else that has undergone this disease or treatment and even the caretaker of an individual.

Being the caretaker is sometimes even more difficult than being the patient, I think.

Thank you.
- Kay

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • lesmeza
    lesmeza Member Posts: 1
    #3
    Hi, my name is Ariane and had non-hodgekins lymphoma stage 3 in 1998. I had radiation everyday and chemo (chop) every 3 weeks. I had all kinds of reactions, extreme fatigue, kidney like infections, bowel problems, infections in my mouth, under my breast, on the side of toe and my skin was hanging, I couldn't eat, I was nauseated, I also had a blood cloth in my right upper leg. I did kept myself neatly every day, I used yogurts to eat and relieve my bowels, I had hemoroids, I just used supositories and ointment A&D. The infections, the doctor gave me ointments, I took at least 12 medecines until finally I stopped some stereoids and felt better without it. To eat better, the doctor gave me MAGE, a milky liquid, it worked right away, I was not hungry but would eat anything in front of me. I became anemic, therefore they gave me shots in my tommy. With all this I tried to hold a phone to say hello to people and I got a walker and paced the floor most of the day, that helped me a lot. I got some nice little bonnet to go out grocery shopping and scarves. Well, as you know it was hell everyday and the loneliness of not knowing what would happen to me, not going out much. I started walking outside and sat in the nearby park 2 hrs at a time. I tried to do things and just look forward to when I would stop the Chemo. I did, and I was out swimming 3 weeks later, then work again. I am now 68 yrs. old, I go hiking, recently I went to Yosemite, CA and went up the Verna fall. I traveled to the Rockies and now I am going to Ireland. So, you see, your daughter will be OK. We must try to be active and eat good healthy foods and have goals. My lymphoma was as big as a grapefruit on my lower spine. The pain was awful when we didn't know it was cancer. I had gone 2 times to emergency and they would not treat a "backache", I had driven there more or less 15 miles to the hospital at night and stood against a wall for 3 hrs waiting for a doctor. That was El Camino Hospital in Sunnyvale, CA. My recommendation is that you are young and you need to not despair, be as active as you can and in spite of your medecine have a tiny bit of red wine sometime, I am French and let me tell you that it helped my mental state to do the things I use to do. A big hug to your daughter...Ariane
  • KC1
    KC1 Member Posts: 1
    #4
    Hi Kay My wife was diagnosed with non hodgkins in sept 2002. She was told she needed a miracle to survive it was that bad.She has undergone 6 chemo treatments and all looks good.She is a very strong individual who never looked back when she was told. Her response to her doctor was let's get started I have to get rid of this thing,I have to go back to work and help raise a grandaughter. I know not everyone can do this but I believe it was that attitude that got her to this point today.She will be checked the last week of this month and her Doctor's say they haven't seen anyone respone so well to this type of treatment which is for reoccurring cancer patient's.She feels she will be cancer free and her Doctor's are also very expectant of a good report.I know it is hard to have to sit back and wait to see what is happening and never knowing really how well the chemo is working,also the hair loss the sickness and all that follows.But words of encouragement and support, patients and love will prevail over all else.
  • klogan
    klogan Member Posts: 1
    #5
    Dear Friend;
    As I read your letters I can only think back (as you will some day, I know) about my veture with lymphoma. The year was 1980 and was diagnosed on my 38th birthday. They found a tonsil to be malignate and used 35 radiation treaments to shrink the tumor. I couldn't receive chemo at time because of some liver damaged caused by an over excessive use of antibiotics prescribed by my GP. Of course, the cancer spread to other parts of my body in the form of no-hodgkins lymphoma. I transferred to a hospital closer to home and was given a 50-50 chance. Back then that was heaven to me. I remembe the same chemo that you spoke about, CHOP, and remember the times of nausua and mouth infections, pain, loss of my hair(now I am natually bald and think nothing of it) and the mental anguish that one goes through. If only I would have had a friend at that time that understand my feelings......I took 6 months of treatment and here I am today. There were many days that I did not think that I would be here today sharing this with you. I can't tell you how to feel or what to think but I can tell you that there is light at the end of this dark tunnel. Hang in there, have faith and if you can find one once of strength use it to your advantage....
    I look at things differently now since that expierence and reach out to those now going through it...let me know if I can help.
    God Bless You!
    Kenn
  • stillpam
    stillpam Member Posts: 2
    #6
    Kay:

    I am not a cancer survivor, but a caregiver. My husband was diagnosed at age 48. His cancer is also stage III, with the small cleaved cell follicular Non-Hodgkins lymphoma diagnosis. I am hoping that your daughter is doing better. This message board is quite old, however. If you'd like to share -- please e-mail me.

    Thank you.
  • blonndi
    blonndi Member Posts: 3
    #7
    stillpam said:

    Kay:

    I am not a cancer survivor, but a caregiver. My husband was diagnosed at age 48. His cancer is also stage III, with the small cleaved cell follicular Non-Hodgkins lymphoma diagnosis. I am hoping that your daughter is doing better. This message board is quite old, however. If you'd like to share -- please e-mail me.

    Thank you.

    My Ex-husband is also dealing with NHL. We are 4 months post stem cell transplant. Im the caregiver, helps the kids and him deal better. Hope your husband is doing better. Its a long road and I wouldnt wish it on anyone. Prayers to you and yours.
  • mariebaril
    mariebaril Member Posts: 2
    #8
    Stage1 NHL in tonsil of my husband

    Hello, I am the wife of a newly diagnosed husband who had his right tonsil removed last month. The pathology report showed that he has Diffuse Large B Cell Lymphoma with positive B cell markers. We were sent to Dalton Massey Cancer Center  oncology for evaluation. My husband does not have any B symptoms, he went through all the tests and there are no signs of desease, PET and Bone Marrow were clear. Initially, the doctor told us my husband would need chemo regardless of no other tumors. He said the cancer was not just in the tonsil that it is in the blood. The ENT also said my husband would need Chemo that removing the tonsil does not cure NHL. We went for the follow up post staging tests, and the doctor said, "NO need to treat my husband at all." He said that it is possible that the cancer was localized and is gone. So, yes this is wonderful news...we werer very happy to hear that he dosen't need CHEMO!. BUT, I am confused by the two opinions from one doctor. Does anyone in this forum have a similar experience or know of anyone who had their tonsil removed and remained cancer free? The pathology said absolute Lymphoma 80% B cell and 20% Follicular.  

  • po18guy
    po18guy Member Posts: 1,509 Member
    #9
    mariebaril said:

    Stage1 NHL in tonsil of my husband

    Hello, I am the wife of a newly diagnosed husband who had his right tonsil removed last month. The pathology report showed that he has Diffuse Large B Cell Lymphoma with positive B cell markers. We were sent to Dalton Massey Cancer Center  oncology for evaluation. My husband does not have any B symptoms, he went through all the tests and there are no signs of desease, PET and Bone Marrow were clear. Initially, the doctor told us my husband would need chemo regardless of no other tumors. He said the cancer was not just in the tonsil that it is in the blood. The ENT also said my husband would need Chemo that removing the tonsil does not cure NHL. We went for the follow up post staging tests, and the doctor said, "NO need to treat my husband at all." He said that it is possible that the cancer was localized and is gone. So, yes this is wonderful news...we werer very happy to hear that he dosen't need CHEMO!. BUT, I am confused by the two opinions from one doctor. Does anyone in this forum have a similar experience or know of anyone who had their tonsil removed and remained cancer free? The pathology said absolute Lymphoma 80% B cell and 20% Follicular.  

    All of the responses are 11

    All of the responses are 11-14 years old.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #10
    mariebaril said:

    Stage1 NHL in tonsil of my husband

    Hello, I am the wife of a newly diagnosed husband who had his right tonsil removed last month. The pathology report showed that he has Diffuse Large B Cell Lymphoma with positive B cell markers. We were sent to Dalton Massey Cancer Center  oncology for evaluation. My husband does not have any B symptoms, he went through all the tests and there are no signs of desease, PET and Bone Marrow were clear. Initially, the doctor told us my husband would need chemo regardless of no other tumors. He said the cancer was not just in the tonsil that it is in the blood. The ENT also said my husband would need Chemo that removing the tonsil does not cure NHL. We went for the follow up post staging tests, and the doctor said, "NO need to treat my husband at all." He said that it is possible that the cancer was localized and is gone. So, yes this is wonderful news...we werer very happy to hear that he dosen't need CHEMO!. BUT, I am confused by the two opinions from one doctor. Does anyone in this forum have a similar experience or know of anyone who had their tonsil removed and remained cancer free? The pathology said absolute Lymphoma 80% B cell and 20% Follicular.  

    Who to believe ?

    Marie,

    Lymphoma is a systemic disease. That is, it can go essentially everywhere very easily. It is virtually never treated exclusively with surgery, even if only a lone tumor is detectable via CT or PET scan. Also, his strain of NHL in the tonsil is more aggressive than many.  I don't understand the statement that "he has lymphoma in the blood."  How was that determined ?  Technically, WBC malignancy in the blood is leukemia. I would request a clarification.

    Be aware that you might (or might not) be using the term "B Symptoms" in two differnig senses.  While he has "B-type disease,"  the term "B symptoms" does not refer to seeing b-type disease, but refers to symptoms like weight loss, night sweats, itching.. It may be that you alread understand this, but it was not clear to me as a reader.

    His disease might be so incipient that the doctors want to not begin chemo in a Watch and Wait program. I would ask them to compare notes, or in this rare case, go get a third opinion from a medical oncologist.  ENTs are almost never oncologists, and you do not say what kind of doctor the other one was.  But if he is not a hematologist or medical oncologist, I would ignore his imput. 

    I don't know that there is a "typical" response to his situation, but impressionistically I suspect that most patients presenting in his manner would be started on chemo.

    .

  • Toowie
    Toowie Member Posts: 1
    #11
    klogan said:

    Dear Friend;
    As I read your letters I can only think back (as you will some day, I know) about my veture with lymphoma. The year was 1980 and was diagnosed on my 38th birthday. They found a tonsil to be malignate and used 35 radiation treaments to shrink the tumor. I couldn't receive chemo at time because of some liver damaged caused by an over excessive use of antibiotics prescribed by my GP. Of course, the cancer spread to other parts of my body in the form of no-hodgkins lymphoma. I transferred to a hospital closer to home and was given a 50-50 chance. Back then that was heaven to me. I remembe the same chemo that you spoke about, CHOP, and remember the times of nausua and mouth infections, pain, loss of my hair(now I am natually bald and think nothing of it) and the mental anguish that one goes through. If only I would have had a friend at that time that understand my feelings......I took 6 months of treatment and here I am today. There were many days that I did not think that I would be here today sharing this with you. I can't tell you how to feel or what to think but I can tell you that there is light at the end of this dark tunnel. Hang in there, have faith and if you can find one once of strength use it to your advantage....
    I look at things differently now since that expierence and reach out to those now going through it...let me know if I can help.
    God Bless You!
    Kenn

    NHL

    god bless you

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