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Happy Monday,

A little about me - I was diagnosied with Stage 4A classic HL in May 2014, and began my ABVD treatment June 2. I have had treatments two and three both postponed by a week due to very low white and red cell counts. I finally have treatment #3 tomorrow and will begin taking Filgrastim the following week for five days. I hope this will keep my counts up and also keep my bi-weekly schedule in check.

I have two questions - 

1 - What has been your experience taking Filgrastim or something like it to boost your cell regeneration?

2 - I have refused to add Decadron to my treatment plan, with permission from my onc. Has anyone else refused steriods during treatment and your thoughts on the actual need for them while having ABVD infusion? 

 

A little more about me - I first became ill in October 2013 with severe upper back pain. After almost every test given showed nothing for months and large amounts of pain killers; I was finally given an MRI (changed doctors). This lead to more blood tests (all normal) and a spinal biospy of the mass in my spine. I was first diagnosed with osteomyelitis (a rare bone infection) After 8wks of heavy anti-biotics and my infectious disease dr ignoring the growing lumps on my clavical, I went back to my primary, who freaked out and ordered more MRI's, CT Scans and finally a biopsy of the lumps. Mass in spine now covers five vertibrae. I was diagnosed with HL in May.

I remain very active, running and cycling on my good days and walking when I am not feeling up to it. Keeping active and staying positive is my goal for this "Little bump in the road we call life"  you can visit my blog at deannahp.blogspot.com

 

 

 

Comments

  • Welcome

    Welcome aboard the Lymphoma Board, dperich.

    Your case is in a few ways similiar to what mine was, in that I was late stage (Stage IIIA) Hodgkin's, and did R- ABVD for treatment. You did not mention Rituxan, which some HL patients get, and some do not, depending on the presence of CD-20 or certain other cells in their biopsy (not all strains of HL present CD-20 cells, but my strain did).  I'm glad you are still energetic and active after two infusions.  I suspect from your stage that you are scheduled for 12 infusions, as I was (equals six "cycles" of treatment).  Regarding your questions:

    (1) I took neulasta, a drug similiar to Filgrastim. Both are called "colony stimulators" , and cause the bone marrow to produce WBCs. These drugs frequently cause bone pain, especially in persons with arthritis.  Because I broke my back in an auto accident years before, and have two collapsed disks, my first treatment of neulasta caused severe pain for a day or two.  Thereafter my dosing had to be reduced.  Because of your spinal involvement I would be cautious and have some serious pain meds available if necessary (only Loritabs would begin to touch the pain I developed).  Hopefully this will not occur with you, but orthopedic pain after these colony stimulators is quite common.

    (2) Most ABVD regimens do not contain a steroid.  Virtually all of the common Non-Hodgkins combinations do contain one, usually Prednisone, but ABVD does not.  I looked up Decadron, and the doctor is most likely giving it to you due to your spinal involvement.  If he said that not getting it is OK, it must be OK.  One thing it does is lessen or prevent swelling, so that too is something to be watching for, just in case.  I attached a link to the drug from chemocare.com, the best chemo drug information site on the web, in my opinion.  It has info an all FDA-approved chemotherapy meds, side-effects, and a lot more technical information.

    Decadron:  http://chemocare.com/chemotherapy/drug-info/decadron.aspx#.U8TeUukg-70

    Filgrastim: http://chemocare.com/chemotherapy/drug-info/filgrastim.aspx#.U8Te9Okg-70

    As this article mentions, this drug (and others similiar) can spike your LDH readings. LDH (Note: NOT "LDL") is a measure of cell residue secondary to tissue death, which can be caused by cancer or serious trauma. It is one of the classic "protein" tests used to look for heart attack in Emergency Rooms, among other uses. Of all of my lab work, LDH tracked the course of my lymphoma more accurately than anything else did.

    http://labtestsonline.org/understanding/analytes/ldh/tab/test/

     

    Best of luck with all of this, and again, welcome. You will make a lot of great freinds here.  Lymphoma is one of the mst treatable of all cancer types.  The prognosis for most strains is excellent.  My strain was a different form of HL from yours (I had an extremely rare, and extremely indolent form, known as NLPHL), but I heard my hematologist tell an Intern he was teaching in the room with me one day, "If you have to have cancer, lymphoma is more or less the thing to have."

    max

     

  • illead
    illead Member Posts: 873

    Welcome

    Welcome aboard the Lymphoma Board, dperich.

    Your case is in a few ways similiar to what mine was, in that I was late stage (Stage IIIA) Hodgkin's, and did R- ABVD for treatment. You did not mention Rituxan, which some HL patients get, and some do not, depending on the presence of CD-20 or certain other cells in their biopsy (not all strains of HL present CD-20 cells, but my strain did).  I'm glad you are still energetic and active after two infusions.  I suspect from your stage that you are scheduled for 12 infusions, as I was (equals six "cycles" of treatment).  Regarding your questions:

    (1) I took neulasta, a drug similiar to Filgrastim. Both are called "colony stimulators" , and cause the bone marrow to produce WBCs. These drugs frequently cause bone pain, especially in persons with arthritis.  Because I broke my back in an auto accident years before, and have two collapsed disks, my first treatment of neulasta caused severe pain for a day or two.  Thereafter my dosing had to be reduced.  Because of your spinal involvement I would be cautious and have some serious pain meds available if necessary (only Loritabs would begin to touch the pain I developed).  Hopefully this will not occur with you, but orthopedic pain after these colony stimulators is quite common.

    (2) Most ABVD regimens do not contain a steroid.  Virtually all of the common Non-Hodgkins combinations do contain one, usually Prednisone, but ABVD does not.  I looked up Decadron, and the doctor is most likely giving it to you due to your spinal involvement.  If he said that not getting it is OK, it must be OK.  One thing it does is lessen or prevent swelling, so that too is something to be watching for, just in case.  I attached a link to the drug from chemocare.com, the best chemo drug information site on the web, in my opinion.  It has info an all FDA-approved chemotherapy meds, side-effects, and a lot more technical information.

    Decadron:  http://chemocare.com/chemotherapy/drug-info/decadron.aspx#.U8TeUukg-70

    Filgrastim: http://chemocare.com/chemotherapy/drug-info/filgrastim.aspx#.U8Te9Okg-70

    As this article mentions, this drug (and others similiar) can spike your LDH readings. LDH (Note: NOT "LDL") is a measure of cell residue secondary to tissue death, which can be caused by cancer or serious trauma. It is one of the classic "protein" tests used to look for heart attack in Emergency Rooms, among other uses. Of all of my lab work, LDH tracked the course of my lymphoma more accurately than anything else did.

    http://labtestsonline.org/understanding/analytes/ldh/tab/test/

     

    Best of luck with all of this, and again, welcome. You will make a lot of great freinds here.  Lymphoma is one of the mst treatable of all cancer types.  The prognosis for most strains is excellent.  My strain was a different form of HL from yours (I had an extremely rare, and extremely indolent form, known as NLPHL), but I heard my hematologist tell an Intern he was teaching in the room with me one day, "If you have to have cancer, lymphoma is more or less the thing to have."

    max

     

    Welcome from us

    We hope you are able to join our group, you have been through a little battle but you must be a fighter to remain so active.  We hope you contiue to do well with the rest of your chemo.  Please feel free to join us, we run the gamut of emotions here including laughter and a litttle goofiness at times Laughing but most of all we care. 

    Hang in there,

    Bill & Becky

  • jimwins
    jimwins Member Posts: 2,107
    illead said:

    Welcome from us

    We hope you are able to join our group, you have been through a little battle but you must be a fighter to remain so active.  We hope you contiue to do well with the rest of your chemo.  Please feel free to join us, we run the gamut of emotions here including laughter and a litttle goofiness at times Laughing but most of all we care. 

    Hang in there,

    Bill & Becky

    Who you calling goofy, Becky? ;)

    Me? 

    image

  • dperich
    dperich Member Posts: 2

    Welcome

    Welcome aboard the Lymphoma Board, dperich.

    Your case is in a few ways similiar to what mine was, in that I was late stage (Stage IIIA) Hodgkin's, and did R- ABVD for treatment. You did not mention Rituxan, which some HL patients get, and some do not, depending on the presence of CD-20 or certain other cells in their biopsy (not all strains of HL present CD-20 cells, but my strain did).  I'm glad you are still energetic and active after two infusions.  I suspect from your stage that you are scheduled for 12 infusions, as I was (equals six "cycles" of treatment).  Regarding your questions:

    (1) I took neulasta, a drug similiar to Filgrastim. Both are called "colony stimulators" , and cause the bone marrow to produce WBCs. These drugs frequently cause bone pain, especially in persons with arthritis.  Because I broke my back in an auto accident years before, and have two collapsed disks, my first treatment of neulasta caused severe pain for a day or two.  Thereafter my dosing had to be reduced.  Because of your spinal involvement I would be cautious and have some serious pain meds available if necessary (only Loritabs would begin to touch the pain I developed).  Hopefully this will not occur with you, but orthopedic pain after these colony stimulators is quite common.

    (2) Most ABVD regimens do not contain a steroid.  Virtually all of the common Non-Hodgkins combinations do contain one, usually Prednisone, but ABVD does not.  I looked up Decadron, and the doctor is most likely giving it to you due to your spinal involvement.  If he said that not getting it is OK, it must be OK.  One thing it does is lessen or prevent swelling, so that too is something to be watching for, just in case.  I attached a link to the drug from chemocare.com, the best chemo drug information site on the web, in my opinion.  It has info an all FDA-approved chemotherapy meds, side-effects, and a lot more technical information.

    Decadron:  http://chemocare.com/chemotherapy/drug-info/decadron.aspx#.U8TeUukg-70

    Filgrastim: http://chemocare.com/chemotherapy/drug-info/filgrastim.aspx#.U8Te9Okg-70

    As this article mentions, this drug (and others similiar) can spike your LDH readings. LDH (Note: NOT "LDL") is a measure of cell residue secondary to tissue death, which can be caused by cancer or serious trauma. It is one of the classic "protein" tests used to look for heart attack in Emergency Rooms, among other uses. Of all of my lab work, LDH tracked the course of my lymphoma more accurately than anything else did.

    http://labtestsonline.org/understanding/analytes/ldh/tab/test/

     

    Best of luck with all of this, and again, welcome. You will make a lot of great freinds here.  Lymphoma is one of the mst treatable of all cancer types.  The prognosis for most strains is excellent.  My strain was a different form of HL from yours (I had an extremely rare, and extremely indolent form, known as NLPHL), but I heard my hematologist tell an Intern he was teaching in the room with me one day, "If you have to have cancer, lymphoma is more or less the thing to have."

    max

     

    Max,
    Thank you for the

    Max,

    Thank you for the excellent information. Not up to elaborating much more than this today. Got that queasy, food won't fix it feeling. I begin to take shots next tuesday for five days. This should keep me on my bi-weekly schedule.

     

    Best to everyone

    Deanna

  • dperich said:

    Max,
    Thank you for the

    Max,

    Thank you for the excellent information. Not up to elaborating much more than this today. Got that queasy, food won't fix it feeling. I begin to take shots next tuesday for five days. This should keep me on my bi-weekly schedule.

     

    Best to everyone

    Deanna

    Lovely

    Deanna,

    No thanks necessary. I enjoy sharing information. I went to your blog, and it is excellent.

    Everyone has a different chemo experience (which seems mostly linked to the number of cycles perscribed).  My experience was ROUGH and "cumulative," in that it got worse as I received more medicine.  Do not try to slay too many dragons at once. If you need to sleep, or to just do nothing, then do nothing.  Sleep is curative and restorative. Our hustle-and-bustle society thinks people must run a marathon two days after bypass surgery. Use a more contemplative approach.

    Pulling for you, like everyone else here is. Your "doo" is lovely, and low maintenance !

    max

    "Collector of cats and old cars"

    .

     

  • Lovely

    Deanna,

    No thanks necessary. I enjoy sharing information. I went to your blog, and it is excellent.

    Everyone has a different chemo experience (which seems mostly linked to the number of cycles perscribed).  My experience was ROUGH and "cumulative," in that it got worse as I received more medicine.  Do not try to slay too many dragons at once. If you need to sleep, or to just do nothing, then do nothing.  Sleep is curative and restorative. Our hustle-and-bustle society thinks people must run a marathon two days after bypass surgery. Use a more contemplative approach.

    Pulling for you, like everyone else here is. Your "doo" is lovely, and low maintenance !

    max

    "Collector of cats and old cars"

    .

     

    Status ?

    Do you still check in here at CSN, Deanna ?

    I hope thing are going smoothly for you.

    max