New member - late stage - starting Keytruda

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Hello all. Look forward to sharing. As my login indicates, I am the caregiver of this family. Husband diagnosed advanced throat tumor about 5 years ago. Maxed out Erbitux and radiation, finally going into remission. He has been on peg-tube since about half way through the radiation. Diagnosed late stage 4 with return of inoperable primary tumor and mets in lung this past December. Further spread of cancer held at bay with weekly Erbitux until stopped this past week.

The primary tumor "erupted" thru the outer jaw (fungating tumor) about three months ago, involving the carotid artery and branches. This resulted in many spontaneous bleeding episodes and recurring infection. Eight days ago they did angioplasty embolization of multiple branches and aneurysm of the carotid artery itself to stop bleeding. This has had the added benefit of the primary tumor appearing to be reducing in size due to partially removing it's blood supply. We are fortunate to have found a great doctor for wound care in addition to a fabulous oncologist.

I should note my husband has minimal pain and is still quite active, walking several miles a day. We are enjoying great quality of life. I, too, am a cancer survivor (contralateral mastectomies) and we both consider every day of the past fifteen years a blessing.

Keytruda was fast tracked for approval by the FDA for treatment of head and neck cancer this past August due to the great results in the initial trial. About 25% saw reduction of tumor size, another 25% saw stabilization of cancer. (This is about twice as effective as Erbitux.) Two new trials started using Keytruda as 1st line treatment. At least this is the best information I have been able to find in the past several days.

Having peg-tube checked (leaking at wound site) and porta-cath implanted this coming week. Hope to have authorization from medicare about the same time and to start treatment very soon.

Hopefully I will be able to share additional information about Keytruda.

Caregiver Wife

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
    edited October 2016 #2
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    welcome

    caregiver wife,

    Welcome to the H&N forum, I am sorry that you are here.

    Your story hits at the heart of the pain cancer can bring to a family. I can appreciate the positive steps your husband has made with treatments and hope that Keytruda will provide good results.

    Sharing your story does provide information which will benefit other H&N members.

    Best of luck moving forward.

    Matt

  • phrannie51
    phrannie51 Member Posts: 4,716
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    Hi...and welcome!

    Hearing about the Keytruda is right at the top of my interest list...and I'm sure it's right up there for any of us who have had a recurrence.  I am SO glad you joined this group!  I'm glad to hear that your husband is not in a lot of pain (sure sounds painful when reading about it). 

  • Laralyn
    Laralyn Member Posts: 532
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    Welcome and hope I can help!

    Welcome to the board, and I'm so sorry about the circumstances that bring you here!

    I had HPV+ SCC in my left tonsil and soft palate in 2012, and then lung cancer toward the end of last year. They weren't sure whether it was a new primary or a metastasis of the head and neck cancer, even though it was the exact same type (including HPV+), so I went through first line treatment again (chemo-radiation). On the second PET after the treatments, the cancer was growing in my lungs again so it's now considered a metastasis of the head and neck cancer.

    I started a clinical trial of Keytruda's sister drug, Opdivo, and epacadostat several months ago. After only three treatments, all the lesions and nodules in both lungs were gone--all that remains are two active lymph nodes. My understanding of immunotherapy is that combination trials increase the odds of response, and in some cases the quality of the response. It is worth doing a little research or asking your doctor if your husband can go into a combination trial with Keytruda (or Opdivo) instead of just taking the drug alone. A combination trial with epacadostat might be just what you need. Here is a list of active trials including their locations: Epacadostat Trials

    Is his cancer HPV positive? If so, this trial is also promising and, even better, they can enter you in it, take blood for it, and then hold it for years so it is waiting for when/if other treatments fail. It's in Houston, but giving the blood doesn't require travel there--they send a kit to you. If you end up getting infusions on that trial, you would travel to Houston for a one week period, and then return for a few days once every month (I think). 

    Let me know if there's any way I can help!

  • caregiver wife
    caregiver wife Member Posts: 234
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    Thanks to all for your kind

    Thanks to all for your kind responses!

    Searching the link, I did not find a trial that was applicable to my husband at this time.  Husband's physical condition at time of original diagnosis precluded aggressive combination chemo.  His Erbitux these past several months had to be at a reduced dose.  I don't believe he would tolerate combination treatment at this time.

    Leaking feeding tube replaced today.  Portacath to be inserted early tomorrow morning.  Hopefully, authorization soon.

     

     

  • corleone
    corleone Member Posts: 312 Member
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    Thanks to all for your kind

    Thanks to all for your kind responses!

    Searching the link, I did not find a trial that was applicable to my husband at this time.  Husband's physical condition at time of original diagnosis precluded aggressive combination chemo.  His Erbitux these past several months had to be at a reduced dose.  I don't believe he would tolerate combination treatment at this time.

    Leaking feeding tube replaced today.  Portacath to be inserted early tomorrow morning.  Hopefully, authorization soon.

     

     

    immunotherapy is different in terms of side effects (vs. chemo)

    The combination therapy that Laralyn mentioned before is very different than classic chemo. These are very targeted, and with few exceptions (serious side effects) are much better tolerated. So don’t exclude the possibility of getting into this kind of trial based solely on the physical condition. If there are exclusionary criteria in the study protocol that preclude the enrolment, it’s a different story, but don’t reject this option from the get-go.

  • caregiver wife
    caregiver wife Member Posts: 234
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    corleone said:

    immunotherapy is different in terms of side effects (vs. chemo)

    The combination therapy that Laralyn mentioned before is very different than classic chemo. These are very targeted, and with few exceptions (serious side effects) are much better tolerated. So don’t exclude the possibility of getting into this kind of trial based solely on the physical condition. If there are exclusionary criteria in the study protocol that preclude the enrolment, it’s a different story, but don’t reject this option from the get-go.

    Thank you for your kind

    Thank you for your kind response.  I'm sorry my previous response was not more clear.  I searched the link for trials, there were none that applied to husband's diagnosis.  Was not excluding a possible trial, could not find one.

    Got portacath yesterday.  Doing great.  Still awaiting word of Medicare authorization.

  • caregiver wife
    caregiver wife Member Posts: 234
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    Thank you for your kind

    Thank you for your kind response.  I'm sorry my previous response was not more clear.  I searched the link for trials, there were none that applied to husband's diagnosis.  Was not excluding a possible trial, could not find one.

    Got portacath yesterday.  Doing great.  Still awaiting word of Medicare authorization.

    Authorization received!

    Authorization received!  First Keytruda scheduled for Tuesday!!

    Saw wound doc this morning.  He confirms recurring tumor shrinking/dieing due to loss of blood supply.  I cannot express the relief of no longer fearing a fatal bleed on a daily basis.

    Husband doing great.  No leaking problems with newest feeding tube inserted this past Tuesday.  No adjustment problems with new nutrition TwoCal.  Has put 23 lbs back on since September.  No pain meds except small dose night portacath inserted.  Walking several miles a day.  He is looking forward to starting Keytruda.

    It is amazing how the treatment of late stage cancer with mets is changing.  We are so thankful for the additional time we have already received with Erbitux (with minimal side effects) since stage 4 diagnosis 11 months ago.  No sign to date of any growth of lung mets.

    I am sure some of this might seem daunting to the newly diagnosed.  I am hoping by my posting our experiences others can see the hope for future advances in treatment that we could not have hoped for just a few years ago.

    Stage 4 and Thankful!

  • Hondo
    Hondo Member Posts: 6,636 Member
    edited November 2016 #9
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    Welcome to the Family

     

    Caregiver Wife

     

    Thank you so much for everything you do in being a Caregiver. You will never know just how much it means to not just your husband but to all of us as well. I would truly be lost and lo longtime dead if it was not for the care and love on my Wife Caretaker.

     

    I pray that God will bless you and all you other Caretakers

     

    Tim

     

  • caregiver wife
    caregiver wife Member Posts: 234
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    Hondo said:

    Welcome to the Family

     

    Caregiver Wife

     

    Thank you so much for everything you do in being a Caregiver. You will never know just how much it means to not just your husband but to all of us as well. I would truly be lost and lo longtime dead if it was not for the care and love on my Wife Caretaker.

     

    I pray that God will bless you and all you other Caretakers

     

    Tim

     

    Tim,  thank you for this kind

    Tim,  thank you for this kind reply!  I am 15 years NED after invasive breast cancer, two seperate masectomies. I will forever be in debt to my husband and other listers for the support I, myself, received.  I truly feel I owe a lot of payback, in any way I can, to share support with others.

  • KC61713
    KC61713 Member Posts: 3
    edited November 2016 #11
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    New member-late stage-starting Keytruda

    Caregiver wife,   I commend you for your efforts & sharing your experience. I believe I may be looking at a similar scenario (non-operable regrowth of carotid area) in the not to distant future. Though I initially found it hard to comprehend how & what people are able to endure, I found your info. encouraging that there are still other options available. I'm also hoping to get "back on" Keytruda. Initially had the (6)platinum based stuff, then (3)Opdivo (insurance conflict), (2)Keytruda (oncologist conflict), (6)Erbitux just stopped, after I mentioned I didn't think it was working ...... however when previously receiving the Keytruda infusion I could actually feel it transfer from the IV to the tumor.    "Best of luck" w/your husband's treatments.

  • ChileRick
    ChileRick Member Posts: 1
    edited July 2017 #12
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    Keytruda and "Phoenix Tears?"

    Hi, all...

    new to the forum. 

    Just started Ketruda, discovered there is not much info out regarding Keytruda and Head and neck 

    Squamis cell. So, I have plenty of questions, here is the first. Is there any known issues with Keytruda and THC oil?

  • caregiver wife
    caregiver wife Member Posts: 234
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    Keytruda and THC

    Welcome and sorry you are here.

    Your post raises soooo many issues and questions!

    As Ketruda is only approved as a second line of treatment for Head and Neck cancer, you have previously had chemo therapy??  As I could find NO research of ANY kind that showed THC to be effective for Head and Neck cancer, there would be no medical information of it's use with Ketruda.

    The ONLY trial I could find of THC in humans was of NINE patients with advanced Brain Cancer.   No evidence was produced of any effective results.

    I do not believe it is wise to use any treatment of which your doctor is not aware.  

    Research continues on cancer cells GROWN IN THE LAB for SOME types of cancer, but NO MEANS has been found to administer THC effectively in humans.

    Research even being done in labs shows THC in the WRONG DOSAGE or the WRONG TYPES of cancer can be harmful, in addition to interfering with other treatment.

    In the short time I searched, I found this site to be quite good regarding the research that is being done.                                       http://scienceblog.cancerresearchuk.org/2012/07/25/cannabis-cannabinoids-and-cancer-the-evidence-so-far/#can-treat

    Hope this information helps.  Wishing you the best.