Length of Nivo treatment

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12/2/2017 11:07am
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Replies: 5

Originally told Nivo treatment would be every 2 weeks for a year and then be re-evaluated. After the 4th treatment the dr phoned in an rx for propranolol, with no information or discussion.  Now it looks like it is being stopped after 12 weeks with no explanation. Is this a normal length of dosage time? Could it be related to the rx decision? Thanks

First off, your son needs an explaination as to why he is being prescribed high blood pressure medication. This is not something that is normally prescribed during Nivo.. and not something I have ever heard of as a reason to stop treatment. But if he needs it, then he needs to be told why. Either this oncologist needs to step it up and do his job or I would highly suggest transferring care to a different oncologist. It really strikes a nerve with me when I hear about doctors not communicating with their patients and making decisions without informing them... this is the opposite of how care should be. 

There are a few reasons why Nivo would be stopped so early, but those would be pretty serious side effects and something your son would absolutely need to be told about if there is something going on with his body that needs immediate attention. Otherwise, sometimes there are reasons for skipping an infusion, like when I finished my 4th combination infusion of Ipi/Nivo I had a fever for a few weeks and my liver numbers were quite high. So, instead of starting the first Nivo alone infusion at the scheduled date, we skipped it until a couple of weeks later when the next one was scheduled and re-checked my liver numbers (fever was gone by then) and everything looked good so I went back on Nivo and continued it every 2 weeks until this month.. which was a whole year of Nivo for me.

My wish in this world is for every single human being to get good care by health care professionals in all fields.. it is why I work where I work and do what I do for a living now. So, I wish I could tell you what this doctor is thinking, but I can't, your son should make an appointment soon with him (if he doesn't have one already scheduled) and if your son is ok with you going to appts with him, then please do attend and make sure you and your son get a very detailed reason as to what the doctor is thinking about your son's treatment plan and why he has this new prescription. And, don't hesitate to challenge the oncologist.. if he doesn't seem to come up with a solid reason as to why he is stopping treatment so soon.. ask why he can't just skip infusions until this current issue is resloved and continue after that.

Sending you lots of hugs,

Jenn - stage IV NED - Completed Ipi/Nivo (Yervoy/Opdivo) + surgery

Dhva - (12/2/2017 - 4:57pm)

Thanks Jenn , we learned about the propralonol when h got a phone call from the drugstore saying an rx was ready.  Now got a future visit summary in the mail with appointments through February- but all treatments and labs stopping in Dec 20.  I called the N.P.  Thursday, but the call was not returned. This is very stressful and he is depressed. It’s hard when they don’t communicate . He has a treatment #5 this Wednesday - but not with an accompanying dr visit -so if she doesn’t call I’m not really sure what to try next.

kst - (12/2/2017 - 5:48pm)

You might be in a situation where the insurance company only approved the treatments through the end of the year.  After your renewal I bet it will be extended.  I started Nivo treatment at MD Anderson November 1 and insurance only approved 5 doses initially also.  Because of the drug expense, I bet it will not show up on your appointment chart until they have approval.

Bubbles - (12/2/2017 - 2:36pm)

I recently got an email regarding a melanoma patient being prescribed propranolol and was to later have Nivo added.  I have been in this game a long time (since 2003) and actively researching and posting all things melanoma since 2010.  However, up to this point had seen no convincing data re: propranolol as a valid melanoma treatment.  I did a little research and this is what I sent out:

"As I remembered, there has been one trial for propranolol vs placebo for melanoma...but it was recently stopped due to lack of effect:  https://clinicaltrials.gov/ct2/show/NCT01988831 

However, there was this study report below.....although it is not a very strong study, as it was simply retrospective:

JAMA Oncol. 2017 Sep 28. doi: 10.1001/jamaoncol.2017.2908. [Epub ahead of print]
Propranolol for Off-Label Treatment of Patients With Melanoma: Results From a Cohort Study.

De Giorgi V1, Grazzini M1, Benemei S2, Marchionni N3, Botteri E4, Pennacchioli E5, Geppetti P2, Gandini S6.
Author information

Department of Dermatology, Azienda Sanitaria Toscana Centro, University of Florence, Florence, Italy.
Department of Health Sciences, Clinical Pharmacology and Oncology Unit, University of Florence, Florence, Italy.
Cardiothoracovascular Department, Careggi University Hospital, Florence, Italy.
Cancer Registry of Norway, Oslo, Norway.
Surgical Department Melanoma, European Institute of Oncology, Milan, Italy.
Division of Epidemiology and Biostatistics, European Institute of Oncology, Milan, Italy.
Preclinical and retrospective studies showed that β-blockers inhibit angiogenesis and disrupt migration of melanoma cells via inhibition of noradrenaline-dependent responses.
To study the clinical effectiveness of β-blocker therapy in patients with melanoma and to determine whether propranolol improves progression-free survival in patients with melanoma.
We conducted a prospective study in patients treated for melanoma in our center with propranolol for off-label use. Patients with histologically confirmed stage IB to IIIA cutaneous melanoma and no evidence of metastasis were eligible for the study. At the time of diagnosis, they were asked to take propranolol (80 mg daily) as an off-label adjuvant treatment. If they accepted the treatment, they were considered part of the propranolol cohort (PROP). If they refused treatment but agreed to participate in the study control group, they were considered part of the nonpropranolol cohort (No-PROP).
The primary outcome was progression-free survival. Disease progression was assessed by evaluating the presence of lymphatic, in-transit, or visceral metastases, and the cause of death was recorded.
Among the 53 patients (median [interquartile range] age, 63 [48-75] years; 33 men) included in the study, 19 were eligible for the PROP cohort. Thirty-four patients otherwise eligible but unwilling to take propranolol were enrolled in the No-PROP cohort. The 2 cohorts were comparable in terms of demographic characteristics and primary prognostic factors at baseline. After adjusting for known prognostic factors, Cox models confirmed that use of propranolol at the time of diagnosis was significantly inversely associated with recurrence of melanoma with approximately an 80% risk reduction for propranolol users (hazard ratio, 0.18; 95% CI, 0.04-0.89; P = .03).
In the absence of randomized, double-blind, placebo-controlled clinical trials, this study is the first off-label study of which we are aware of propranolol for melanoma treatment. These results confirm recent observation that β-blockers protect patients with thick cutaneous melanoma from disease recurrence. This study is in accordance with the present policy of "drug repurposing" in oncology. Repurposing the vast arsenal of approved drugs with a nononcology primary purpose may prove an attractive and inexpensive strategy for offering more effective treatment options to patients with cancer."

All that said...I do not find that there is valid data supporting propranolol in place of nivo....esp for a patient with Stage III-IV disease.  However, apparently this small (ONLY 19 patients took the drug!!!) retrospective study of Stage 1-3a patients, is making the rounds.  If only local docs would listen to serious melanoma experts.

As Jenn noted...your son deserves an explanation.  Sometimes immunotherapy has to be stopped due to side effects.  Usually patients are given immunotherapy for 1-2 years...depending on Stage at the start and response.  It is well known by now that median time to response for immunotherapy is 12 weeks with some patients not responding until later.

Hope this helps.  I wish you and your son my best.  Celeste

Dhva - (12/2/2017 - 5:00pm)

Thanks Celeste I did read about investigative trials on combining propralonol with immuno treatments.  Unfortunately, since there has been zero communication I don’t know why it was prescribed. My son has had higher blood pressure lately, but they have never even commented on it as being an issue. I really have no idea what is going on.