Need help, need guidance, need all of you

my wonderful husband
my wonderful husband Member Posts: 6
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hello Everyone -

As I write this, I am broken-hearted. It feels like the world has been swallowed up whole, and the blackness floods my soul. I feel lost and so frightened. My husband was diagnosised with Stage II diffuse b-cell lymphoma in June of this year. We were told by his doctor that he had an 'excellent' chance for a cure from the chemotherapy treatment. The doc said 'go to Reno and bet on it'.

After going through 8 RCHOP treatments, we finally got the PET scan on the day after Christmas, Dec 26. The doctor called us with the results last night. Over the phone he said that three of the lymph nodes that had been affected before were normal. But the large bulky mass, though reduced in size, was still there. The scan was positive for cancer.

For the second time in six months it feels like the world has vanished from under our feet, and we are falling again into a terrifying abyss. The cancer is still there. The doctor is unsure of what the next steps are. Maybe radiation, maybe different chemo, maybe stem cell transplant. He is conferring with his colleauges today; we'll know later today what course they recommend.

I know what this means. At least I think I know what it means. I think it means the prognosis, once gleeming and bright and filled with hope, is fading away from us. If the first treatment fails, then the cancer is more aggressive and now more resistant than ever.

It's still there. And our lives just filled with pain all over again.

Please, please, please let me know what to do. Let me know if there is hope for the cure we were told to count on. Normally I am strong, and so optimistic. But after long months of battling this, I feel captive - a prisioner of war, broken by continual fear and heart ache. I am lost and need you all so.

Comments

  • yesyes2
    yesyes2 Member Posts: 591
    #2
    At a Loss For Words
    Dear My Wonderful Husband,

    My heart goes out to you and your husband. What you are going through is what all of us on this board are afraid of. I was diagnosed with an agressive B cell lymphoma, not DLDC, had a recurrance less than one yr after first treatment and was lucky that I responded well to RCHOP this time around. But throughout my treatment the possibility of a recurrance or the chemo failing was always in my mind. I just wanted to say never give up hope.

    There are other treatment options available as you already are aware of. And if your husband is otherwise stronge and healthy, and under a certain age, a stem cell transplant may be an option for him. There are other chemo cocktails that could be triedalthough much harsher than RCHOP. And have you thought at all about looking into clinical trials, which may be your best option.

    I know it's hard to wait for the doctor to call with options so please remember to breath, sounds so simple but it's something I always forget to do when I am under stress. Also remember that you can get second and third opinions, preferably from major medical centers, ones that specialize in these difficult to treat NHLs.

    It is obvious that you are well versed about DLBC, treatments and what this all means. As I do not have first hand experience all I am able to do is offer my compassion and an ear for listening. Please let us know what the Onc says. And know that I will be keeping you and your husband close to my heart and in my prayers.

    Leslie
  • my wonderful husband
    my wonderful husband Member Posts: 6
    #3
    yesyes2 said:

    At a Loss For Words
    Dear My Wonderful Husband,

    My heart goes out to you and your husband. What you are going through is what all of us on this board are afraid of. I was diagnosed with an agressive B cell lymphoma, not DLDC, had a recurrance less than one yr after first treatment and was lucky that I responded well to RCHOP this time around. But throughout my treatment the possibility of a recurrance or the chemo failing was always in my mind. I just wanted to say never give up hope.

    There are other treatment options available as you already are aware of. And if your husband is otherwise stronge and healthy, and under a certain age, a stem cell transplant may be an option for him. There are other chemo cocktails that could be triedalthough much harsher than RCHOP. And have you thought at all about looking into clinical trials, which may be your best option.

    I know it's hard to wait for the doctor to call with options so please remember to breath, sounds so simple but it's something I always forget to do when I am under stress. Also remember that you can get second and third opinions, preferably from major medical centers, ones that specialize in these difficult to treat NHLs.

    It is obvious that you are well versed about DLBC, treatments and what this all means. As I do not have first hand experience all I am able to do is offer my compassion and an ear for listening. Please let us know what the Onc says. And know that I will be keeping you and your husband close to my heart and in my prayers.

    Leslie

    Thank you, thank you
    Dearest Leslie,

    Thank you for your comforting words, wishes and prayers. You words and compassion lift my heart. I am grateful that when I reached out in this darkness, you took my hand. It means the world...I'm sure you know. Thank you.

    We've not heard back from the Onc yet, but will let you know, absolutely. Will look into the great suggestion of getting a second, and if needed a third, opinion from a major medical center that specializes in this kind of DLBC lymphoma. Will look too for clinical trials nearby that may fit.

    I just want my beloved husband John well and in remission. Fighting is so hard; so, so hard; but if we must, then we shall again. Your kind heart and words help so. Thank you again.

    Catherine and John
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #4
    my wonderful husband said:

    Thank you, thank you
    Dearest Leslie,

    Thank you for your comforting words, wishes and prayers. You words and compassion lift my heart. I am grateful that when I reached out in this darkness, you took my hand. It means the world...I'm sure you know. Thank you.

    We've not heard back from the Onc yet, but will let you know, absolutely. Will look into the great suggestion of getting a second, and if needed a third, opinion from a major medical center that specializes in this kind of DLBC lymphoma. Will look too for clinical trials nearby that may fit.

    I just want my beloved husband John well and in remission. Fighting is so hard; so, so hard; but if we must, then we shall again. Your kind heart and words help so. Thank you again.

    Catherine and John

    Fighting
    Fear is such an overwhelming emotion. My heart goes out to you both. Keep your head up and heart open. What part of the country do you live in? Other opinions are always a good thing. I will keep you both in my thoughts and prayers that a new treatment will help.

    Take care,
    Beth
  • my wonderful husband
    my wonderful husband Member Posts: 6
    #5
    dixiegirl said:

    Fighting
    Fear is such an overwhelming emotion. My heart goes out to you both. Keep your head up and heart open. What part of the country do you live in? Other opinions are always a good thing. I will keep you both in my thoughts and prayers that a new treatment will help.

    Take care,
    Beth

    We're fighting in California
    Thank you, Beth.

    "Head up and heart open" - beautiful saying. Will try to remind myself of this lovely philosophy. To answer your question, we live in Northern California, by Sacramento. Looks like there is a cancer center that has a Lymphoma Program at the University of California, Davis. My hope is to get a second opinion from them since they specialize in this disease. Thank you for your much needed prayers. They are so welcome.


    Catherine
  • JoanieP
    JoanieP Member Posts: 573
    #6
    my wonderful husband said:

    We're fighting in California
    Thank you, Beth.

    "Head up and heart open" - beautiful saying. Will try to remind myself of this lovely philosophy. To answer your question, we live in Northern California, by Sacramento. Looks like there is a cancer center that has a Lymphoma Program at the University of California, Davis. My hope is to get a second opinion from them since they specialize in this disease. Thank you for your much needed prayers. They are so welcome.


    Catherine

    scary time
    Catherine, I know your are scared and it seems like you have fallen in a dark pit but I started a support group in my church called Hope and there is so much Hope with lymphoma. If this Dr does not know what to do go to another one. Some young Dr's are so up on all the latest treatments that will make him well. If you are a woman of faith call on God's strength. HE will direct your path.
  • yesyes2
    yesyes2 Member Posts: 591
    #7
    JoanieP said:

    scary time
    Catherine, I know your are scared and it seems like you have fallen in a dark pit but I started a support group in my church called Hope and there is so much Hope with lymphoma. If this Dr does not know what to do go to another one. Some young Dr's are so up on all the latest treatments that will make him well. If you are a woman of faith call on God's strength. HE will direct your path.

    Second Opinions
    Hi Catherine,

    I am located on the Central coast and go up to UCSF for my second opinions. I could not recommend more highly the care that I have received there from my Hemo/Onc. They are a recognized leader in Lymphoma and lymphoma research. I know it's farther to go but just a thought.

    How are things going today? Please let us know what your doctor has to say in regards to further treatments.

    Sending positive thoughts your way,
    Leslie
  • truckingalong
    truckingalong Member Posts: 445 Member
    #8
    yesyes2 said:

    Second Opinions
    Hi Catherine,

    I am located on the Central coast and go up to UCSF for my second opinions. I could not recommend more highly the care that I have received there from my Hemo/Onc. They are a recognized leader in Lymphoma and lymphoma research. I know it's farther to go but just a thought.

    How are things going today? Please let us know what your doctor has to say in regards to further treatments.

    Sending positive thoughts your way,
    Leslie

    With Prayers
    Hi, Catherine,

    I know how scary that is and what I do to help myself during this process during my chemo treatments are to take one thing at a time. Worrying all the time do not help me but I know that is not easy!! You can do it and just keep busy. I have Hodgkins (with 2 more treatments) so this is different from your husband's situation - I will be interested to hear how things go for him.

    With positive thoughts,
    Liz
    (HL-4-8/10, REMISSION)
  • cancerfree60
    cancerfree60 Member Posts: 1
    #9
    Large B Cell Lymphoma Stage IV
    I just had to respond to your post. It's right not to give up hope. My husband was diagnosed with large B Cell lymphoma that had metastasized to his diaphragm. He underwent Surgery and began RCHOP21 for 8 months along with many hospital stays, blood clots, cracked vertebra from chemo and severe depression. After all that I must say the most important thing you can do for your husband is be there with whatever support you can give him. He needs it not only from you but the rest of the family. It's a courageous battle and we all pray for the best.
    Luckily, I can say my husband is now cancer free and has celebrated his two year cancer free anniversary. He says now that it was my and the families support that got him through a most difficult time. The after affects of a major illness lasts also. Mentally and physically for some people. The only thing you can do is be very understanding and wait for them to go away which the doctor says can be up to five years. So hang in there and I hope things are going well for you and your husband. As long as we have hope there IS hope!
  • Pogonia
    Pogonia Member Posts: 1
    #10
    cancerfree60 said:

    Large B Cell Lymphoma Stage IV
    I just had to respond to your post. It's right not to give up hope. My husband was diagnosed with large B Cell lymphoma that had metastasized to his diaphragm. He underwent Surgery and began RCHOP21 for 8 months along with many hospital stays, blood clots, cracked vertebra from chemo and severe depression. After all that I must say the most important thing you can do for your husband is be there with whatever support you can give him. He needs it not only from you but the rest of the family. It's a courageous battle and we all pray for the best.
    Luckily, I can say my husband is now cancer free and has celebrated his two year cancer free anniversary. He says now that it was my and the families support that got him through a most difficult time. The after affects of a major illness lasts also. Mentally and physically for some people. The only thing you can do is be very understanding and wait for them to go away which the doctor says can be up to five years. So hang in there and I hope things are going well for you and your husband. As long as we have hope there IS hope!

    there is always hope :)
    I was diagnosed with NHL, large B cell whatever, and had a large (they said 'very large') tumor where my uterus would have been had I not had a hyst many years ago. This tumor was diverting my blood supply and I had lost 2/3 of my blood by the time they diagnosed me. I began R-chop last August and finished December 2. The PET scan showed some significant hot spots still, so tomorrow I have my last session of aggressive radiation. Two months later I will have another PET scan and lab work. I thoroughly expect to be clear of cancer, but if not, it's an 'oh well'. Then I'll begin on the next phase.

    Please don't despair (although it is a scary journey). You may cry together sometimes, but the more you try to be optimistic with each other, the easier it is to FEEL optimistic.

    My thoughts and prayers are with you both.

    (I don't like RSS feed and don't see a way to get responses by e-mail, so I'll try to remember to come back here to check in with how things are.)
  • Bodoni
    Bodoni Member Posts: 8
    #11
    not to worry
    Worry won't help much. Be as positive as you can be. Your oncologist is optimistic. He wouldn't say "excellent chance of recovery" if he hadn't seen so many good results. I went through R-CHOP this past summer with success at the age of 81. It worked amazingly well for me. I hope the very same for you and your husband. God Bless.
  • Maurice_lee
    Maurice_lee Member Posts: 1
    #12
    There is always hope
    My lymphoma also came back 3 months after chemotherapy treatments. My wife and I went to the Nebraska Medical Center for a stem cell transplant. It was a last resort. We just went back for our 6 month check-up and the tests came back negative. With the improvements in treatment that are occurring I believe I have to survive a few years then there will be treatment that will help me if I relapse. I am looking forward to living a long active life. I realize there are no guarantees. I am just happy to be feeling well today.
    I know how you and your husband feel. We were there. A practical suggestion: Review all the people and events in your life that you are grateful for. A grateful person cannot be unhappy.
    I wish you all the best.

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