Treatment Update: Torisel

derMaus
derMaus Member Posts: 558

I'll be having my third weekly round of Torisel in a couple of days and thought it was time to post an update.  

Torisel is a brand name for the drug Temsirolimus, which is administered via IV. (Everolimus is the version that's taken orally.) They're all versions of an mTOR inhibitor, geared to my genetic PI3K mutation. Thus far I've had traditional chemo, which did nothing, and immunotherapy, which worked for 9-10 months but eventually gave out. I have one large tumor in my abdomen, under the psoas muscle, which has been been previously radiated. The new growth area is outside the radiation field but, fortunately, there's been no spread elsewhere yet. It can't be operated on, nor can it be radiated anymore.

I was really scared to start this treatment because of Lulu's mouth sore experiences, which others have reported as well. When they gave me the option of IV or pills, I jumped on the IV which I think surprised the doc. I'll have 8 rounds of treatment then they'll do a scan to see if/how it's working. I was doubly scared because we hadn't been able to get a good biopsy to even confirm what, exactly, we're dealing with. Absent that, the doctor revisited the original Foundation One report and came up with Torisel. Fortunately, the side effects have been tolerable and I think it's doing some good. Common effects are skin rash, mouth sores, nausea/vomiting, tiredness, headache and runny nose/sinus problems. Thus far I've only had nausea - which isn't really nausea, but a feeling of being so full I can't eat another bite, like after Thanksgiving dinner...but when I haven't eaten since the previous day. I've also had sniffles, mild headache and tiredness, all tolerable thus far.

The reason I think it may be doing some good is this: I can walk more freely now than I've been able to in a couple of months. For the last 4-5 days, I've even been able to walk without my cane and with very little back pain. That's huge: a month ago, just walking from the bedroom to the kitchen required a lot of planning, and all of my stamina. Now I can walk up and down my hall as many times as I want, and I even drove to the cleaners today. Score! Who'd have thought that just running an errand could be such a source of pleasure.

I suppose it could be that the tumor is just shifting, but I wouldn't expect that to correlate with a lessening of pain, or increasing mobility. Last night was the first time I tried to go to sleep without my trusty ice bag, which has been my bedtime buddy for months. Strange to miss such a thing. I'll continue posting updates about this round of treatment, but wanted to get something out there before too much time had gone by. Cross your fingers this is some sort of real response, and not a placebo effect at work. Thank you all for your support and encouragement! B

Comments

  • jan9wils
    jan9wils Member Posts: 179 Member
    edited July 2019 #2
    I would be quite surprised if

    I would be quite surprised if it was placebo effect. Your mobility and lack of pain together indicate to me that it is working. Can you eat mini meals throughout the day to maintain your nutrition? I am excited for you and wish you continued improvement.

  • Donna Faye
    Donna Faye Member Posts: 427
    So good to hear from you

    The smallest things can mean a lot in this battle. I rejoice in the lesser pain and walking w/o cane. Also, you are sharing so much good information about another drug and how it works. My friends and doctors do not understand how much this site means to me, but I have found such strong warriors here and have learned so much from every post I read. Here's sending you tons of good feelings and longer walks everyday. B! Hugs ! DF

  • MAbound
    MAbound Member Posts: 1,164 Member
    I'm so glad you are getting a

    I'm so glad you are getting a positive response so far! It's been such a long haul for you and you really have been so helpful to everyone else with what you have learned along the way. I'm really hoping that you and your doctors have finally found what is going to work for you. 

  • barnyardgal
    barnyardgal Member Posts: 272
    Good news. It's great to hear

    Good news. It's great to hear you're walking better and the side effects are manageable. Hopefully, the meds will conquer this beast!

  • EZLiving66
    EZLiving66 Member Posts: 1,476 Member
    Score one for the good guys!!

    Score one for the good guys!! Bobbi, it sure sounds like this stuff is working. It's so good to find you upbeat and happy. You need to keep yourself nourished so maybe try those protein bars they give to bariatric patients. My friend's husband does bariatric surgery and afterward, patients are given a supply. 

    Please keep us updated on your progress!!

    Love,

    Eldri

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933
    Great News

    Such Great News!

  • Lulu7582
    Lulu7582 Member Posts: 112
    Yes Yay! for the small things!

    Good to hear from you and yay for those small things like being able to walk your halls more comfortably and to go to the store....hope the drug continues to shrink that lesion. You are in my thoughts and prayers. xoxo

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    edited July 2019 #9
    Thanks for taking the time to

    Thanks for taking the time to post Bobbi. So happy to hear your great news! Looking forward to the next great update!

    Love and Hugs,

    Cindi

  • ConnieSW
    ConnieSW Member Posts: 1,604 Member
    edited July 2019 #10
    I can't say it all

    any better than Donna Faye did, I'd just be putting it into other words with the same meaning. I'm rejoicing with you. You keep going in the same direction!

  • Armywife
    Armywife Member Posts: 449 Member
    edited August 2019 #11
    So happy!

    B, we've been gone for a week for a wedding out of state, and I'm so far behind on these boards, but I am stopping everything to thank God and rejoice in this great report!  Been thinking about you so often - love hearing that you're up and around and even driving!  So proud of you, friend!

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    Wonderful news!

    Hey Bobbi! Such wonderful news! I choose to believe that your new treatment is working and shrinking the tumors. It is such great news to hear that you can now do some activities again. Wow!

    May you continue to have continued success with this new drug. Hope your sensation of fullness goes away soon so you can keep your nutritional status up. Keeping you in my prayers dear one. 

    Lori

  • Feelingalone74
    Feelingalone74 Member Posts: 243
    derMaus, I hope that your

    derMaus, I hope that your body responds well to the new treatment. I'm glad your regaining your strength  and able to get around with ease.

    Wishing u all the best!

    Michelle 

  • Rosesforever
    Rosesforever Member Posts: 44 Member
    Sending positive energy your way

    I have all my digits crossed for your successful treatment. I wanted to thank you for the trampoline suggestion. 

    I had 45 Lymph nodes removed and have developed lymphedema. I have the trampoline in the middle of my living room. Not attractive but effective. im not good but anything is something. I’m wishing best wishes for you

  • Kaleena
    Kaleena Member Posts: 2,064 Member
    Glad you are having a

    Glad you are having a positive response and are getting your mobility back

    Hugs!

    Kathy

  • jjtrim
    jjtrim Member Posts: 27
    Great news!

    Hoping for continued improvement!

  • Forherself
    Forherself Member Posts: 686 Member
    Thinking of you Der Maus

    Praying that you are finding relief this week.

  • Jairoldi
    Jairoldi Member Posts: 221
    Great news

    I'm a bit behind on reading posts. I join the others in rejoicing for this ease of symptoms. May your treatment plan continue to take the beast.