CSN Login
Members Online: 6

You are here

Treatment Update: Torisel

derMaus's picture
derMaus
Posts: 555
Joined: Nov 2016

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

jan9wils's picture
jan9wils
Posts: 56
Joined: Mar 2017

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's picture
Donna Faye
Posts: 233
Joined: Jan 2017

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
Posts: 854
Joined: Jun 2016

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
Posts: 208
Joined: Oct 2017

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's picture
EZLiving66
Posts: 1337
Joined: Oct 2015

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's picture
CheeseQueen57
Posts: 797
Joined: Feb 2016

Such Great News!

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

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's picture
TeddyandBears_Mom
Posts: 1523
Joined: Jun 2015

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's picture
ConnieSW
Posts: 1432
Joined: Jun 2012

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
Posts: 279
Joined: Feb 2018

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
Posts: 519
Joined: Oct 2009

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
Posts: 187
Joined: Jun 2019

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's picture
Rosesforever
Posts: 31
Joined: Sep 2018

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's picture
Kaleena
Posts: 1942
Joined: Nov 2009

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

Hugs!

Kathy

jjtrim's picture
jjtrim
Posts: 16
Joined: Mar 2019

Hoping for continued improvement!

Forherself's picture
Forherself
Posts: 172
Joined: Jan 2019

Praying that you are finding relief this week.

Jairoldi's picture
Jairoldi
Posts: 202
Joined: May 2017

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.

Subscribe to Comments for "Treatment Update: Torisel"