Finally decided to share my story

Spanishlady
Spanishlady Member Posts: 7
in Lymphoma (Hodgkin and Non-Hodgkin) #1

hey all,

finally decided it it was time to share a post. I was 48 years old when I was diagnosed with NHPHL. diagnosis did not come easily as I didn't have your typical symptoms. It was mid-July 2015 and I was experiencing a nagging unproductive cough for weeks. I went to my GP on two different occasions. The first time I was told  it was allergies, the second visit, I was told it was just a summer cold. it was the end of August and the cough was getting worse. I called my GP and demanded an X-ray. That is when my life changed as I knew it. to make a long story short, 2 weeks after the initial x-ray, I was scheduled for thoracic surgery to biopsy the 7 cm mass in my chest. I also had a 4 cm mass in my lower right lung. 

advanced stage III NLPHL. I was given 6 cycles of APVD which began in Oct 2015. In Mid December I was ordered another PET which came back as a "complete response." March 21 was my last infusion. IN the beginming, I could deal but at halfway mark I was starting to feel more fatigued, stomach problems, swelling of my hands and face, neuopathy, vision problems...you name it. I can't wait to feel normal again but what is "normal?" I focused so much on getting through treatment that I had forgotten to fully grasp the emotional toll it has taken.

this experience may have started out like a death sentence but it has made me realize that I am not in control  and it's okay to feel vulnerable.

Comments

  • po18guy
    po18guy Member Posts: 1,465 Member
    #2
    Treatment is rough, but not

    Treatment is rough, but not treating is rougher! As to "normal", you are in the process of finding out what that will be. Cancer is a game changer and a life changer. Just as we cannot go back to our teens, we cannot go back to our pre-cancer selves. I do not want to "get back to my old life." Why? Because my old life had cancer in its future! No, I'd rather move on and malke the best of things as they develop. With ABVD, what you watch for is lung toxicity. It may never really show up, but it may also create a chronic condition. Whatever happens in the future health-wise, it is good to compare it with the cancer itself. We have the choice of being victim, or victor. You are a victor!   

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,811 Member
    #3
    Welcome

    Welcome, SpanishLady, I am glad you wrote.

    My lymphoma was NLPHL also, and also advanced Stage III. It is a rare lymphoma, constituting less than 1% of all new lymphoma cases (5% of new Hodgkin's cases, but HL is a lot rarer than NHL).

    As Po Guy so well noted, there is really no going back, no precancer life in our future. But there is wonderful life in remission awaiting.   As he also noted, abvd can cause lung issues, it did for me. Bleomycine is the potential culprit there. Like you, I also had bad neuropathy (thank Vinblastine).

    NLPHL is a very indolent form, readily put in remission.  I have written about it and abvd extensively here, or if you would like to discuss any of this via the email function, please feel welcome

     

    max

  • Spanishlady
    Spanishlady Member Posts: 7
    #4
    po18guy said:

    Treatment is rough, but not

    Treatment is rough, but not treating is rougher! As to "normal", you are in the process of finding out what that will be. Cancer is a game changer and a life changer. Just as we cannot go back to our teens, we cannot go back to our pre-cancer selves. I do not want to "get back to my old life." Why? Because my old life had cancer in its future! No, I'd rather move on and malke the best of things as they develop. With ABVD, what you watch for is lung toxicity. It may never really show up, but it may also create a chronic condition. Whatever happens in the future health-wise, it is good to compare it with the cancer itself. We have the choice of being victim, or victor. You are a victor!   

    Normal

    i am ready to start living life as a cancer survivor. In my prior life I was a bit pessimistic and an extreme worrier but this experience made me realize no matter how much worrying I do, I can't change a damn thing-it is what it is. The silver lining in this whole experience has made me stop and smell the roses. I can't, or won't sweat the small stuff and look forward to the new me! It will be a process for sure but I am ready for the challenge

  • Spanishlady
    Spanishlady Member Posts: 7
    #5
    Max Former Hodgkins Stage 3 said:

    Welcome

    Welcome, SpanishLady, I am glad you wrote.

    My lymphoma was NLPHL also, and also advanced Stage III. It is a rare lymphoma, constituting less than 1% of all new lymphoma cases (5% of new Hodgkin's cases, but HL is a lot rarer than NHL).

    As Po Guy so well noted, there is really no going back, no precancer life in our future. But there is wonderful life in remission awaiting.   As he also noted, abvd can cause lung issues, it did for me. Bleomycine is the potential culprit there. Like you, I also had bad neuropathy (thank Vinblastine).

    NLPHL is a very indolent form, readily put in remission.  I have written about it and abvd extensively here, or if you would like to discuss any of this via the email function, please feel welcome

     

    max

    hey Max, 
    looks  like we have

    hey Max, 

    looks  like we have a few things in common. I hope my lungs stay healthy as I had numerous boughts of bronchitis throughout my life which puts me at an even greater risk of weakened lungs, but I am hoping for the best. I am in good shape physically and hope it can carry me to even better health. I have read your extensive knowledge of our disease and I thank you for you passion in learning so much about our disease and treatment. 

    I have a PET scan scheduled tomorrow to confirm remission. this day would have normally been my infusion day, so I may be a bit emotinal as I think about the others I left behind. I just can't wait to see how I feel in the next few weeks without chemo being pumped in my veins. I better be patient but I sure hope my hair and eyebrows grow back with avengence. I'm tired of looking like a cancer patient patient, I just want to be me again.

  • Bill_NC
    Bill_NC Member Posts: 133 Member
    #6
    Welocme SpanishLady

    I was diagnosed with NLPHL beck in Jan 2013,  I found friends and support on this site that helped me a lot through treatments. Max is a wealth of knowledge about NLPHL. So post your concerns, you are not alone in this fight.

  • po18guy
    po18guy Member Posts: 1,465 Member
    #7
    Spanishlady said:

    Normal

    i am ready to start living life as a cancer survivor. In my prior life I was a bit pessimistic and an extreme worrier but this experience made me realize no matter how much worrying I do, I can't change a damn thing-it is what it is. The silver lining in this whole experience has made me stop and smell the roses. I can't, or won't sweat the small stuff and look forward to the new me! It will be a process for sure but I am ready for the challenge

    Worry cannot change the past

    Worry cannot change the past or predict the future. It can only paralyze the present, which is all that we possess. 

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