metastatic medullary thyroid cancer

My mother has metastatic medullary thyroid cancer. She has tried Caprelsa, which did not work at all. In the past few month cancer seem to progress extremely aggressively. Now her oncologist has her on Soranefib, which we are not yet to know if working or not. She is in a lot of pain and basically in bed 24/7.
I feel like doctors have washed their hands of her since they are suggesting hospice services to me. I would like to know if anyone else has experience with pain management, life management anything at all?

Report post

11 replies. Join the discussion

Hi - I am so sorry for what you and your mother are having to go through. Have you tried getting a second opinion at one of the cancer centers that people on this site have mentioned (Sloan-Kettering, Mayo Clinic, MD Anderson, etc.)?

Report post

we were seeing Dr. at OSU and have a medical oncologist in Cincinnati, but now because she is can hardly walk to the bathroom it is not realistic to go out of state

Report post

xl184 is now approved & I believe looking for people. Have they considered other treatment options? The sorenfib (at least from my oncologist) isn't all too effective in treating MTC & side effects are not so good, that was one of her reasons for not having me on it but I know every oncologist will have their own opinion from their experience. I looked up clinical trials and found some ongoing & recruiting for MTC. Has this been explored at all? If not I would highly recommend it. Its not a cure but at least it could give her more time & maybe more quality of her life!!
How old is she? Exactly where has it spread? Might be able to give you more help & information


Ages Eligible for Study:   18 Years and older
Genders Eligible for Study:   Both
Inclusion Criteria:

The subject has histologically confirmed diagnosis of MTC that is unresectable, locally advanced, or metastatic
The subject has documented progressive disease (PD) as determined by the investigator
The subject has been previously treated with available standard therapy for unresectable, locally advanced, or metastatic MTC; or other currently available therapy is considered inappropriate for the subject as determined by the investigator
The subject has Eastern Cooperative Oncology Group (ECOG) performance status of 0 - 2
The subject has adequate organ and marrow function
The subject is capable of understanding and complying with the protocol requirements and has signed the informed consent document
Sexually active subjects (men and women) must agree to use medically accepted barrier methods of contraception (eg, male or female condom) during the course of the study and for 3 months after the last dose of cabozantinib received as part of this study, even if oral contraceptives are also used. All subjects of reproductive potential must agree to use both a barrier method and a second method of birth control.
Exclusion Criteria:

The subject has received cytotoxic chemotherapy (including investigational cytotoxic chemotherapy) or biologic agents (eg, antibodies) within 4 weeks, or nitrosoureas/mitomycin C within 6 weeks before the first dose of cabozantinib
The subject has previously been enrolled in a clinical trial evaluating cabozantinib including placebo-controlled trials in which the subject may not have been treated with cabozantinib
The subject has received radiation therapy:

to the thoracic cavity, abdomen, or pelvis within 12 weeks before the first dose of study treatment , or has ongoing complications or is without complete recovery and healing from prior radiation therapy
to bone or brain metastasis within 14 days before the first dose of cabozantinib
to any other site(s) within 28 days before the first dose of cabozantinib
The subject has received radionuclide treatment within 6 weeks before the first dose of cabozantinib
The subject has received prior treatment with a small molecule kinase inhibitor or a hormonal therapy (including investigational kinase inhibitors or hormones) within 14 days or five half-lifes of the compound or active metabolites, whichever is longer, before the first dose of cabozantinib
The subject has received any other type of investigational agent within 28 days before the first dose of cabozantinib
The subject has not recovered to baseline or CTCAE ≤ Grade 1 from toxicity due to all prior therapies except alopecia and other clinically non-significant side effects
The subject has active brain metastases or epidural disease (certain exceptions apply)
The subject requires chronic concomitant treatment of strong CYP3A4 inducers (eg, dexamethasone, phenytoin, carbamazepine, rifampin, rifabutin, rifapentin, phenobarbital, and St. John's Wort)
The subject requires concomitant treatment, in therapeutic doses, with anticoagulants such as warfarin or warfarin-related agents, heparin, thrombin or Factor Xa inhibitors, or antiplatelet agents (eg, clopidogrel). Low dose aspirin (≤ 81 mg/day), low-dose warfarin (≤ 1 mg/day), and prophylactic low molecular weight heparin are permitted
The subject has experienced any of the following:

clinically-significant GI bleeding within 6 months before the first dose of cabozantinib
hemoptysis of > 0.5 teaspoon (2.5 ml) of red blood within 3 months before the first dose of cabozantinib
any other signs indicative of pulmonary hemorrhage within 3 months before the first dose of cabozantinib
The subject has radiographic evidence of cavitating pulmonary lesion(s)
The subject has radiographic evidence of tumor in contact with, invading or encasing any major blood vessel
The subject has evidence of tumor invading the GI tract (esophagus, stomach, small or large bowel, rectum or anus), or any evidence of endotracheal or endobronchial tumor within 28 days before the first dose of cabozantinib
The subject has uncontrolled, significant intercurrent or recent illness (which may include certain cardiac disorders, certain gastrointestinal disorders, and major surgeries)
The subject is unable to swallow capsules
The subject is pregnant or breastfeeding
The subject is unable or unwilling to abide by the study protocol or cooperate fully with the investigator or designee
The subject has had another diagnosis of malignancy, requiring systemic treatment, within two years before the first dose of cabozantinib, unless that malignancy has been treated with curative intent and the subject is taking no other anti-cancer therapy
  Contacts and Locations
Please refer to this study by its identifier: NCT01683110

Contact: Exelixis Medical Affairs 1-888-393-5494

United States, California
Stanford, California, United States, 94305
Contact: Ruth Lira     650-723-1367        
United States, Massachusetts
Boston, Massachusetts, United States, 02114
Contact: Lori Wirth, MD     617-724-4000        
United States, Michigan
Detroit, Michigan, United States, 48202
Contact: Haythem Ali, MD     313-916-1048        
United States, Oregon
Portland, Oregon, United States, 97239
Contact: Matthew Taylor, MD     503-494-1080        
United States, Pennsylvania
Philadelphia, Pennsylvania, United States, 19104
Contact: Marcia Brose, MD     215-746-7987        
Sponsors and Collaborators

Report post

morphine is not helping much and doing bad things to her GI. Trying other pain killers to see what will give more comfort :(

Report post

She is 63. Has lesions in the liver (I think that’s mostly why Sorenefib was prescribed). Lesion in adrenal gland, infected lymph nodes in the chest.
thanks for all the info!!!

Report post

just talked to her, more vomiting and nausea. She hasn't taken her Nexavar today and now wants to stop it all together. can't say I blame her :(

Report post

Will keep you and your mother in my thoughts and prayers..

Report post

Mine is in liver too - overall side effects have been tolerable on Caprelsa - I would ask Dr about it. I can personally say from my experience I understand how she feels with wanting to stop. When I quit the trial for XL184 my family was really upset but in their hearts they knew I was making the best decision for me & I loved them even more for supporting that decision. Only she knows what she is feeling & when enough is enough. Where your moms tumors are seems like were pretty much in the same boat and treatment wise stopping the one drug, taking nothing for a couple months & then starting this new drug was the right decision for me. I know if I had continued on the other medicine I would have died last summer. Don't get me wrong it helped it kept the tumors in check but the treatment was killing me (was down to 85 lbs & didn't do anything except lay in bed & poop, that was my life). The new drug I still have bad days but right now 1 year later these bad days are nowhere near as bad as my other ones & no where near as often. Each of us tolerate the meds differently so I can't promise sunshine & roses but I can give you my experience & suggestion that it's worth a conversation with her oncologist. I'll be sending positive thoughts & prayers to your mom & all your family

Report post


I have been taking Caprelsa and instead of the calcitonin levels going down it has really gone up. Has this happened to anyone?

Report post

yes! that happened to my mother and her tumor got larger. doctor stopped Caprelsa right away. I gu

Report post

My doctor said to stay on the Caprelsa because the scans so far look stable. My calcitonin went from 800 to over 4000 in two months. I am afraid to find out were the growth is to be causing the increase in the ca level. How is your mom doing? Is she feeling any better?

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support ThyCa

Help ThyCa: Thyroid Cancer Survivors' Association reach its goals and support people like yourself by making a donation today.

Donate to  ThyCa: Thyroid Cancer Survivors' Association

Discussion topics

Help and information from ThyCa

Community leaders