Opdivo

[stillstANNding]

Rose just updated Jim's thread in Child Neurology forum. He has a really bad episode of R. Arthritis caused by this cancer drug. See here: Only registered and activated users can see links., Click Here To Register...

So I am wondering, does this mean that we can't take this instead of the more harsh chemo (should we need it) because of our autoimmune MS??

Bummer, if so.

Prayers for Rose and Jim and Jon. Rose has RA herself and it is also flaring. Makes perfect sense but very bad timing.

ANN

[agate]

The prescribing information for Opdivo advises letting your doctor know if you have an autoimmune disease such as Crohn's or lupus. MS isn't mentioned but might be one of the autoimmune disorders you're supposed to mention to the doctor.

It sounds to me as if you and the doctor would then make up your minds whether it would be OK to take Opdivo.

The article in Rose's link doesn't really say that any autoimmune disease you already have will get worse if you take Opdivo, does it? I think it's saying that you might be at risk for developing the autoimmune disease of RA if you take Opdivo, and so your problem might be whether you want to risk adding another autoimmune disease to the MS for the sake of the benefits of Opdivo.

And it isn't known for certain that MS is an autoimmune disease, apparently. From the National MS Society Website:

Multiple sclerosis is considered to be an immune-mediated disease in which the body's immune system attacks the central nervous system (CNS). Most MS experts believe it to be an autoimmune disease, although this continues to be the subject of debate in the scientific community.

[stillstANNding]

Thanks, Agate. I haven't been able to find a reference to MS either. There are known problems w Chrons disease and Myasthenia Syndrome.

Optivo puts the immune system in overdrive. I suspect there will be problems. I think it may be possible to treat or pre-treat w steroids but I haven't found a good reference.

ANN

[Earth Mother 2 Angels]

((((((Hugs to All)))))) ~

Ann~

Thank you for linking to Jim's latest update.

I did a little search for Opdivo and MS and Opdivo and autoimmune diseases, and I didn't really come up with much, just personal testimonies of patients, who experienced an exacerbation of their RA or celiac, and other patients, who were inquiring about the risk.

Opdivo was only given FDA approval last year, so there isn't a large data base on it yet.

I haven't read about the other types of cancer treated with Opdivo, but with lung cancer, the patient has to fail chemo, before Opdivo will be considered. I've read the same about Keytruda. Sadly, that means that there is no way of avoiding chemo.

Chemo must have helped Jim a little, because his tumor shrunk slightly. From his pre-Opdivo CT scan results:

"... cavitary mass now measuring 4.1 cm x 4.0 cm (previous measuring 5.4 cm x 4.8 cm)"

But it didn't prevent cancer from metasticizing to his right lobe and his hilar (opening at the top of the lungs), nor did it reduce other nodules or the plueral effusion (where the cancer cells roam). Jim's blood work results also did not improve.

When I called Jim's lovely infusion nurse, the day after Jim's Opdivo infusion, she mentioned steroids with a caveat. Steroids can compromise the immune system. There is nothing benign about steroids, as they carry a truckload of side effects, including cardiac damage.

To me, it seems counterproductive to give Opdivo to ramp up the immune system and steroids to compromise the immune system. When Jim's infusion nurse said, "We don't want to give steroids with Opdivo," that translated to me that steroids are contraindicated with immunotherapy.

But I think the patients, who acquired RA from Opdivo (and I'll bet they already had it, before their infusion, but may not have known it), in the Johns Hopkins study were treated with steriods. I'll have to go back and read it for the hundreth time. I'm having trouble keeping my brain cells in order these days ~ sleep deprivation and doing our 2016 taxes =

Before each of his two rounds of chemo, Jim was given a steroid infusion (everything goes through the port in his right clavicle area). That's one reason why he did so well without many side effects, until the 3rd week post-chemo, when the steroids wore off. On the other hand, maybe those steroids compromised his immune system and contributed to the cancer spreading. I don't know, I'm just trying to think logically. And yes, that is a tall order for me right now!

To All:

Jim and I greatly appreciate your love and support, and any ideas, information and suggestions you offer are gifts to us. Bless You!

I hope that sharing our journey is also informing and enlightening you. This is one of our life's objectives ~ to teach others through our experiences. As I have learned so much from all of you, and from our BT community during the past 17 years, I hope that you are learning from us.

We can't thank you all enough for your prayers.

Love & Light,

Rose

[SuzE-Q]

(((Rose)))

[Earth Mother 2 Angels]

((((((Hugs to All)))))) ~

agate ~

I can't recall seeing any mention of auto immune diseases on the Opdivo prescribing information. Mind you, we didn't know what he was getting until the day before his infusion (we thought he was going to get another round of chemo), and we weren't given any literature about Opdivo, until Jim brought home a copy of poorly written warnings (eg., very bad joint pain). And no mention of auto immune diseases at all.

And I want to clarify that Jim did tell Dr. P that he has RA several times, as well as nurses. In response to the question, "How much pain do you have?" he answered, "None, except for a few aches and pains here and there from RA." Apparently, none of these people noted this in his chart. And none of them said to him, "You have RA?"

Jim just trusted that the System worked and that his 2015 exam and results, and our family doctor's notes, would be available in his chart (on the computer) for the oncologist and all nurses and others to see.

We saw a pharmaceutical TV Ad today, in which the narrator says, "Tell your doctor if you've had a liver transplant." We both laughed. Shouldn't your doctor know that you've had a liver transplant, without you telling him/her? I mean, a liver transplant should be in your medical record, right?!

Likewise, no one here should have to tell an oncologist that you have MS. That should be all over your medical record.

Jim has had gallons of blood taken during this process. It should be protocol to order the RA Factor on every oncology patient, before starting any treatment, including chemo, radiation, and surgery, and especially immunotherapy.

At some point, I will offer this suggestion to Dr. P. It might save future patients from experiencing what Jim is going through right now.

Love & Light,

Rose

[agate]

Rose, this is the listing for Opdivo on Drugs.com:

Only registered and activated users can see links., Click Here To Register...

The second page ("Side Effects") has a more comprehensive listing of side effects, and you'll notice how many of the side effects are described as "immune-mediated." The patient is advised to contact the doctor immediately if there is "joint or muscle pain" while taking Opdivo but I see no mention of rheumatoid arthritis aside from the mention (on the first page) of autoimmune disorders with a couple of examples given:

To make sure Opdivo is safe for you, tell your doctor if you have:

• lung disease or breathing problems;
  
• liver disease;
  
• kidney disease;
  
• a thyroid disorder;
  
• an autoimmune disorder such as lupus, Crohn's disease, or ulcerative colitis; or
  
• if you have received an organ transplant.

Doctors don't read medical records. They seem to be in too much of a hurry, and this fact has worried me for years but there seems to be nothing to do about it except to be very emphatic with them if you think something needs to be brought to their attention.

For instance, did Jim use the abbreviation "RA" when he mentioned it? That might have escaped the nurse's attention or she might not even be familiar with that abbreviation, believe it or not. I wouldn't be too surprised if the nurse and even the doctor didn't realize that rheumatoid arthritis is an autoimmune disease. Since I have osteoarthritis, which isn't, I've become aware that arthritis seems fuzzy in a lot of people's minds. They don't always know that there are the two types.

You and Jim may know far more about Jim's condition than the health professionals. It would be good if they're up to speed on his case but you and Jim might have to give them some coaching.