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Bad Experience With Clinical Trial Avelumab and PF-04518600 (Long)

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

 

As some of you know I'm stage IV endometrial adenocarcinoma cancer. I have been through a hysterectomy, two different types of chemo treatment and now two different clinical trials. Only the first chemo of six cycles of Taxol and Carboplatin were successful in reducing the tumors. I then had a hysterectomy and was put under surveillance. Within three months the cancer recurred. A clinical trial and more chemo followed without success in reducing the tumors. I then entered another clinical trial, the Phase I/II clinical study on Avelumab and PF-04518600I at MD Anderson.

 

At the end of June, I officially left the clinical trial. But even before that, I knew the drugs were not working for me. I became very ill after my second infusion with Avelumab. I could hardly leave my bed even after four days. I thought that after a few days that I would recover, but I didn't. I began to think that I would have to enter hospice sooner than I anticipated. I was dizzy and developed tachycardia on top of the iron deficient anemia I had been fighting for awhile. I had lots of fatigue. I had many things I wanted to complete before dying.

 

So I have been busy taking care of myself. I live alone and have no family nearby. Thank goodness, a nephew from out of state volunteered to help me out for a week, cleaning, getting rid of stuff and advising me on paperwork. Otherwise, I have been on my own. I knew I had to find local assistance. This week I arranged to have some of my meals to be delivered and for an personal aide to help me part time. I also arranged some shopping help and transportation assistance, and I just finalizing paperwork for final body deposition and cremation paperwork. That's why I haven't updated my status on the CSN board. Too much to do and not enough energy. I feel more caught up now.

 

During the Phase I/II clinical study on Avelumab and PF-04518600I, I bled a lot from the PF-04518600I the first drug, that I was infused with. This is one of its side effects. So my anemia got worse. Toward the end of April, I almost left the clinical study when I realized that my tumors were growing larger. I have exophytic (external) vagina tumors so it's easy for me to tell. When I told one of the doctors in the clinical trial that the tumors were growing, he told me not to be concerned because the second drug, Avelumab was supposed to shrink them. It did not. They continued to grow. This is another study that I wish that I had left earlier than I did When will I learn? During the first injection of Avelumab, I had uncontrollable tremors and chills. This is supposed to be a common side effect of the injection of Avelumab. The nurses threw about four or five blankets on me. The vaginal tumors grew larger and I developed vaginosis. I was in a lot of pain, had a lot of discharge and the vaginosis made me stink. (TMI, yes). I asked for better pain medication because I used up all my Tramadol, that I had been prescribed a year before and had not needed to use until this. The nurse in the clinical study told me that I should go to my local clinic to be treated for my infection. I thought that this was strange because I have been going every two weeks to MD Anderson and had not been to my local clinic in more than a year. Also, I didn't think that the local clinic would know how to treat an infection in someone who was in an immunotherapy clinical trial. Apparently, the nurse in the clinical trials was unaware of how the use of antibiotics impaired the action of immunotherapy drugs. https://www.medscape.com/viewarticle/875712 Instead of relying on antibiotics and my local clinic, I treated the vaginosis with hydrogen peroxide and it went away. The gynecological oncologist at MD Anderson who had treated me before I entered the clinical study ordered a treatment of radiation to shrink the vaginal tumors, and it did.

 

I am now being treated with Taxol and Avastin by my gynecological oncologist at MD Anderson. I think they're shrinking the vaginal tumors. At least they are not growing. My treatments are weekly with a two week break once a month. I am grateful that I am not in pain. The two week break seems to have allowed my red blood cells to increase again. Today, I don't feel as fatigued. I hope that everyone is doing well or at least have been able to manage their pain to their satisfaction.

ConnieSW's picture
ConnieSW
Posts: 1415
Joined: Jun 2012

and so sorry for what you have been going through. I've been concerned. I'm thankful things have improved and hope they continue to do so   Know you are thought of often. 

CheeseQueen57's picture
CheeseQueen57
Posts: 781
Joined: Feb 2016

What a horrible experience. I’m so sorry you had to go through all of that And that it is somewhat better now. Thanks for sharing all the details and we are with you in spirit. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2542
Joined: Mar 2013

linmk, I have been wondering how you have been doing and now you have answered what you have been going through! I am glad your nephew came to help with things, he sounds like a wonderful young man.  You, and all the warriors, are in my prayers.  

barnyardgal
Posts: 197
Joined: Oct 2017

I'm so sorry you're having to go through all that. I'm glad you're getting a little relief from the pain. I'll be keeping you in my thoughts.

Kathy G.'s picture
Kathy G.
Posts: 201
Joined: Dec 2012

I am not on the boards often since I had a relatively easy and short journey, but I do stop by to read & keep up with the old timers as well as newcomers.

 

It always makes me incredibly sad to read about someone going it alone. I know many of us are older and have outlived spouses, friends and family members. Still, this is such a scary disease to navigate on your own.

I am in awe of your strength!

I am sorry you have had such a difficult time and challenging treatments. I hope you are able to regain your strength...tying up loose ends is a stress reliever, but having to do so while you are so sick just further depletes your energy.

I pray your body gives you a break and therefore enjoy some well deserved peace for awhile!

Hugs!

Northwoodsgirl
Posts: 506
Joined: Oct 2009

Oh my goodness you have been through more than one should have to suffer. I am glad you are getting radiation and it is shrinking the cancer. You mustered the strength to update this forum with your experiences. There probably are many others who have suffered similarly but don’ t have the fortitude to make their voices heard. Thank you for your fortitude....

Many women who develop uterine cancer have never had children ( I didn’t have children). Many women don’t have family or friends close by either. It sounds like your nephew is an angel sent to you.  I believe his kindness will be rewarded in his lifetime. 

Telling a very sick study participant to go to a “primary care ”  or family practice to deal with an immunotherapy related infection is the most aggregious suggestion. Your GYN/ONC is your primary care provider when you have gynecological cancer.

And it makes me sad to think that you self-treated with hydrogen peroxide!!!  You need to share that information with your oncologist. That “clinical trial” nurse should be terminated for lack of nursing judgement and failure to communicate & coordinate care. Being part of a clinical trial doesn’t relieve a nurse of the professional responsibility of ensuring the study participant is appropriately referred and health issues communicated to the patient‘s GYN/ONC.  My ❤️ heart goes out to you dear one....

(Hug)

Lori

derMaus's picture
derMaus
Posts: 552
Joined: Nov 2016

Linmk, I'm so glad you posted even though the content is not what any of us would have hoped. What a distressing time you've had of it! I can't imagine all you've had to go through. Thank you for letting us, your friends and community, know what's going on with you. You are in my thoughts and prayers. Hugs, B

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

It means a lot to me. I am fine with whatever happens next. I'm in a good place. I don't like pain, and fortunately I am not experiencing any pain at this time. I know that most of you also have your challenges, and you are in my thoughts too. I wish you well and thank you for letting us know what is working and/or not working in your cancer treatments.

Soup52's picture
Soup52
Posts: 894
Joined: Jan 2016

Happy you are no longer in pain. Prayers for progress.

Armywife's picture
Armywife
Posts: 265
Joined: Feb 2018

So happy you are back with us!  I've been thinking about you.  Happy to know you are back on a treatment that's working.  We are here for you, and even though you live alone, you are NOT alone!  Please keep in touch often!

I'm supposed to be at MD Anderson for a scan and followup in mid Sept.  Maybe I will see you there!  Not sure if I'm going to make it because I fell and broke my right ankle in three places and have to have surgery this week and be non-weight-bearing for two months, so am not sure how to navigate Houston on my own.  Will keep in touch!

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

Armywife, I'm so sorry to hear about your broken ankle. That's terrible. I hope that your surgery goes well this week and that you will be up at at'em soon. Please keep in touch. I think of you often and wish you the best. I am starting chemo in Austin this coming week under the supervision of my gynoncologist oncologist at MD Anderson. I don't know how well that will work. I'm a little apprehensive about the change. If I don't like it, I'll just switch back to MD Anderson in Houston. I have a scan scheduled at MD Anderson in early October. I think the Taxol/Avastin chemo regime is working right now. I'm going to stop taking Glucophage for a few days after my chemo because this last time I became dehydrated from diarreha. I'll start the Glucophage today now that my condition has improved. I love Houston! After chemo, I shop, and/or visit a nice restaurant or museum thanks to the energy from the steroid given along with the chemo. Take Care!

Armywife's picture
Armywife
Posts: 265
Joined: Feb 2018

Hoping your transition is smooth.  I did my chemo here in San Antonio and it was wonderful.  MD Anderson told me that chemo is chemo and you can do it anywhere.  Obviously we research things like icing our limbs and what combo of steroids, etc works for us, but I bet you'll do just fine. 

Do tell me your favorite restaurants in Houston!  My daughter is supposed to meet me there this time and I'd like to take her somewhere fun for dinner.  She will have to push the wheelchair, but I think we will do ok!

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

I'm sure you're right Armywife that I have nothing to worry about, however I don't get the same cocktail of drugs every time I go. One week it's Taxol/Avastin and the next week it's Taxol alone. I'm going to keep a close eye on the week, cycle, and dosage for awhile to ensure nothing goes wrong. I will email you privately with some restaurant names. Good luck again on the surgery.

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