My husband's cancer is back (or never really left) - carbo after cisplatin?

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jbrenna8
jbrenna8 Member Posts: 7
in Head and Neck Cancer #1

my husband completed his initial treatment of cisplatin with concurrent radiation in August of 2016 and his PET in November was clear (NED).  His initial experience was very difficult (severe nausea/hospitalization, PEG tube, pneumonia) but he got through it even though he had to be wheeled down for his final radiation appointment.  He has been recovering and with exercises combined with electo-stimulation of his throat muscles and a few esophageal dilations, he is now able to eat fairly well with the help of copious amounts of milk.  And now just when we felt able to breathe a little and make plans, his "routine" PET showed uptake in four spots in his right lung.  The plan is to begin chemo again with Carboplatin + erbitux + 5FU.  Has anyone experienced anything similar with Carbo being tried after Cisplatin?  We are both very anxious about the outcome and side effects.  Thank you so much.  I already feel supported just from reading other posts.

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  • caregiver wife
    caregiver wife Member Posts: 234
    #2
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    Carbo - second time around

    Husband had Taxol/Carbo once every 3 weeks for about a year and half.  Currently NED.  He had Erbitux + radiation first time around.  He has some neuropathy from Taxol, but tolerated treatment very well.

    Wishing you both the very best,

    Crystal

  • jbrenna8
    jbrenna8 Member Posts: 7
    edited September 2017 #3
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    caregiver wife said:

    Carbo - second time around

    Husband had Taxol/Carbo once every 3 weeks for about a year and half.  Currently NED.  He had Erbitux + radiation first time around.  He has some neuropathy from Taxol, but tolerated treatment very well.

    Wishing you both the very best,

    Crystal

    Carbo after Cisplatin - The battle begins again.

    Thank you, Crystal.  We have only been married 15 months (we found each other late in life) and cancer has been with us the whole time.  We were beginning to think we were out of the woods until last month's results.  And we're in the middle of building a new home and trying to sell the one we are in now.  But yesterday we laughed ourselves silly about something so maybe we'll be able to keep the fear, sadness and disbelief at bay.  Each day we remind ourselves of all that we have to be grateful for -- it's a lot.  Anyway, I guess I just needed to say it out loud.  Thanks for "listening"

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #4
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    erbitux agve me acne

    jbrenna8,

    There have been a number of H&N members with secondary treatment after confirmation of uptake in the lungs.  In particular, I am thinking of a few very successful members and hope they see your post.  You may want to search the threads for them.  It is a recent post and they should respond if you private message them.

    If the humor keeps the fear, sadness and disbelief at bay, joke on.

    Matt

    gp

  • Laralyn
    Laralyn Member Posts: 532
    #5
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    Carboplatin after cisplatin

    Hi jbrenna8,

    I had cisplatin in 2012 as a part of chemo-radiation for head and neck cancer (SCC HPV+, left tonsil and soft palate). In 2015, I was diagnosed with lung cancer (also SCC HPV+). I had chemo-radiation again, this time with carboplatin. I'm on the young side for cancer (46 for the first) so my body may be better able to tolerate the chemo, but I was just fine for the carboplain. It was milder than the cisplatin, with less nausea. The only stronger side effect was that I lost my hair.

    On the other hand, my lung cancer was long enough after my head and neck cancer that it wasn't clear whether it was a metastasis. It also grew in a way that was more like a new primary than a metastasis--so it was treated as a new primary. Your husband's lung spots are more clearly a metastasis, and I don't know if carbo+erbitux+5FU is a standard second-line treatment. It's definitely worth a second opinion, even if that means driving to a larger metropolitan area. I'd also look into clinical trials: this group can help you locate one that might be a good fit for your husband. It may be worth trying immunotherapy (via trial or Opdivo/Keytruda) before more chemo--it has lower side effects overall, and you can also do the chemo afterward if your husband doesn't respond to immunotherapy. 

    My cancer came back after the lung chemo-radiation and I entered a clinical trial with two immunotherapy agents. I had to find that trial myself, even though I was at one of the top 10 cancer centers in the country (UCLA). Cancer centers usually only tell you about trials they offer at that location, and I switched to The Angeles Clinic for this specific trial. I was one of the complete responses to it--I'm currently cancer free.

    So there's hope, and carbo can be tolerated after cisplatin... but I'd get that second opinion for sure. Hope this helps!

  • jbrenna8
    jbrenna8 Member Posts: 7
    #6
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    Laralyn said:

    Carboplatin after cisplatin

    Hi jbrenna8,

    I had cisplatin in 2012 as a part of chemo-radiation for head and neck cancer (SCC HPV+, left tonsil and soft palate). In 2015, I was diagnosed with lung cancer (also SCC HPV+). I had chemo-radiation again, this time with carboplatin. I'm on the young side for cancer (46 for the first) so my body may be better able to tolerate the chemo, but I was just fine for the carboplain. It was milder than the cisplatin, with less nausea. The only stronger side effect was that I lost my hair.

    On the other hand, my lung cancer was long enough after my head and neck cancer that it wasn't clear whether it was a metastasis. It also grew in a way that was more like a new primary than a metastasis--so it was treated as a new primary. Your husband's lung spots are more clearly a metastasis, and I don't know if carbo+erbitux+5FU is a standard second-line treatment. It's definitely worth a second opinion, even if that means driving to a larger metropolitan area. I'd also look into clinical trials: this group can help you locate one that might be a good fit for your husband. It may be worth trying immunotherapy (via trial or Opdivo/Keytruda) before more chemo--it has lower side effects overall, and you can also do the chemo afterward if your husband doesn't respond to immunotherapy. 

    My cancer came back after the lung chemo-radiation and I entered a clinical trial with two immunotherapy agents. I had to find that trial myself, even though I was at one of the top 10 cancer centers in the country (UCLA). Cancer centers usually only tell you about trials they offer at that location, and I switched to The Angeles Clinic for this specific trial. I was one of the complete responses to it--I'm currently cancer free.

    So there's hope, and carbo can be tolerated after cisplatin... but I'd get that second opinion for sure. Hope this helps!

    Carbo after Cis

    Thank you, Laralyn.  I haven't been able to be back on this site because of pre and post hurricane activities.  Today is our first day home with internet.  My husband started his chemo yesterday and because of the hurricane, we didn't have opportunity to reach out for a second opinion.  We are "near" Moffitt which is 2 1/2 hour drive,  (in fact, that's where he received his initial therapy).  Thank you for sharing your journey with cancer.  I'm happy to hear that you have no sign of cancer!  That gives us hope.  I believe we will have a PET/CT scan scheduled for 6 weeks to see if there is sign of response and/or discuss alternate (immunotherapy?) options.  Unfortunately, it does not appear that the full histology was performed with the initial pathology to see if his lesions express the genes or proteins to help indicate which options may be best.  We should hear those details next week.  Somehow we will need to learn to live our lives with cancer and not wait for "better" days.  Thanks again, Laralyn.  -- Jan

  • jbrenna8
    jbrenna8 Member Posts: 7
    #7
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    CivilMatt said:

    erbitux agve me acne

    jbrenna8,

    There have been a number of H&N members with secondary treatment after confirmation of uptake in the lungs.  In particular, I am thinking of a few very successful members and hope they see your post.  You may want to search the threads for them.  It is a recent post and they should respond if you private message them.

    If the humor keeps the fear, sadness and disbelief at bay, joke on.

    Matt

    gp

    Erbitux

    Thank you, Matt, for the humor!  We can always use a smile.  In the midst of reeling from "our" cancer diagnosis, we had to delay treatment/research to deal with hurricane Irma.  We finally have power and internet service.  Laralyn replied, which is someone you may have been referring to in your response.  Our update is below in response to her reply.  Thank you for caring. -- Jan

  • nikolaf
    nikolaf Member Posts: 50
    edited September 2017 #8
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    jbrenna8 said:

    Carbo after Cis

    Thank you, Laralyn.  I haven't been able to be back on this site because of pre and post hurricane activities.  Today is our first day home with internet.  My husband started his chemo yesterday and because of the hurricane, we didn't have opportunity to reach out for a second opinion.  We are "near" Moffitt which is 2 1/2 hour drive,  (in fact, that's where he received his initial therapy).  Thank you for sharing your journey with cancer.  I'm happy to hear that you have no sign of cancer!  That gives us hope.  I believe we will have a PET/CT scan scheduled for 6 weeks to see if there is sign of response and/or discuss alternate (immunotherapy?) options.  Unfortunately, it does not appear that the full histology was performed with the initial pathology to see if his lesions express the genes or proteins to help indicate which options may be best.  We should hear those details next week.  Somehow we will need to learn to live our lives with cancer and not wait for "better" days.  Thanks again, Laralyn.  -- Jan

    We go to Moffitt, too.  I

    We go to Moffitt, too.  I hope things are going well with his treatment....

  • CarolynHarvey
    CarolynHarvey Member Posts: 8
    #9
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    Almost done treatment BUT

    Im sorry, I am new to this board and didn't know I was commenting on someone elses thread. I can't seem to delete it.

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