Besremi check with RN

[Elizka]

Hi,

Today, I had a check-in with my HEM's RN because I've had two Besremi shots.

While she was pleasant enough, several of her comments have continued to drag me down about taking Besremi, even having PV! Now, I'm one of two patients using Besremi in their office, but her comments such as: "let's hope all is okay with your liver and kidneys over time," and "let's hope you also don't have side effects when we increase the dose" were discouraging. Yes, I know there can be issues, but do I need to be reminded of them? She also said something like: "though this is a cleaner version, people forget that Interferon is a serious drug."

Maybe I'm living in a well-designed reality of my own making—that Besremi is helping my body deal with PV, setting me up to have a normal life span and I'm not going to have issues with it. I like that reality better than imaging the possible damage the drug is doing.

E

P.S. I HATE when someone says to me "good for you for working out so much." Do they say that to someone in their 30's? Ageism.

P.S.S. My healthcare provider is world-class and normally every encounter is outstanding.

[hunter5582]

I have regular check-ins with two hematologists and the nurse from Biologics. They do not feel compelled to remind me of potential adverse effects. They just ask me questions about how it is going. I know what to watch for. I monitor my labs and am alert to the known side effects. I wonder if the nurse would have asked the same questions about hydroxyurea or another common drug. Maybe some just have bad memories of the older forms of interferon. Of course there can be side effects. I like my odds with Besremi better than the other more toxic choices.

Keep up the positive imaging. The mind-body connection is real. After being on Interferons since May 2021 I have a very positive image of what the interferons can do.

PS - You are too young to be "working out so much." That is what helps keep us feeling young.

[AllEars]

OMG……I sympathize with you!You don’t need that kind feed back so soon in your Bersami journey!!!!

Ive read your posts before….you are awesome and have so much going for you(diet, exercise, supplements)

In this journey…..

Hang in there….

Ive been taking Pegasys for 3 months

Platelets down from 1100 to 561 last week.

🙏

AllEars

[Hopetohelp]

I too find myself hanging on to a few words said during my consultation. They stick in your head going round and round. For me mind over matter and positivity helps so much in enjoying a near normal life so when I find myself in this situation I tell myself that all will be well and no point in worrying unless results show otherwise in which case I will deal with it if that time arises. I think we are all aware of what problems can arise but a bit of encouragement from the haematologists can go a long way

[charl17]

I dealt with 4 hematologists while I was on HU. Not one of them had a serious discussion with me about signs of toxicity. In retrospect I remember the signs and I did pay a heavy price because I was not alert to potential issues. You need to be aware of what can go wrong with interferon.

[Bonston in reply to charl17]

So what do we do. Take nothing and wait for the ball to drop.

[Joetcalr in reply to charl17]

What would you say can go wrong with interferon? I'm on Peg, not going well, just feel permanently under the weather, ulcers etc, feeling low. Can it do irreversible damage? Jo

[EPguy in reply to Joetcalr]

Besremi, the supposedly milder INF, does have a black box warning, the most severe. But so does HU. I have started INF therapy and still on Hu so I'm subject to all of these.

From US FDA a list of "what can go wrong" Page 4 has suggested dose changes to address some of them: (this is for Besremi INF)

accessdata.fda.gov/drugsatf...

It also has this:

<<Some of these side effects may cause death>>

That is irreversible. But I'm not sure there have ever actually been deaths exclusively from INF therapy, esp the modern pegylated versions, and esp if, while on INF, we get proper check ups at the Dr. *This part is important* They check for liver and other developing issues, and the less severe but negative effects as you experience. They may adjust the dose accordingly. Has your Dr discussed dose adjustments? I see discussion in your earlier posts.

Are your blood numbers still ok?

I am now on Bes so am also subject to this irreversible adverse condition FDA states. But as with all the meds we take, they get approved because the odds of risk reduction are high enough that the low possibility of severe adverse events are worth the benefit. Our Drs Rx them for the same reason. But it's up to us to keep the reality checks going.

Are you able to access Besremi? We are starting to hear in the Voice of patients doing better on it.

[Joetcalr in reply to EPguy]

Thanks for your reply, the side effects list is frightening. I've another blood test in a month, hoping my hb will be going up again by then. Cheers Jo

[Bonston]

That is not encouraging at all! You said your MPN expert is world class. Who is it? I would like to know.

[Elizka]

UC Davis Health/UC Davis Cancer Center.

[IrishHiker]

Devil’s advocate response:

Speaking from experience as a retired Oncology nurse who use to administer chemotherapy for hospitalized patients, my interpretation of your experience is different.

Nurses are taught to constantly “assess and educate” when they interact with patients (and families). Whenever I gave chemotherapy to my patient (who was “new” to me) I would ask about any reactions they may have had from previous

Chemo doses. If it was their first time getting the drug, I would go over potential drug reactions, interactions and things to watch out for like blood in urine, neuropathy, etc. and yes warn about long term organ damage to look out for.

The comment the nurse made, “good for you” (in response to exercise) think about all of the other patients that nurse may care for…many are not able to do much in the way of exercise due to the type of cancer they have and or side effects of treatments.

It is more the case that the majority of their patients are often fatigued or unable to exercise at all and so meeting a patient who is capable of regularly exercising is really not the norm (at any age) hence the cause of the nurse’s reaction.

Hope this gives you a bit of insight into why the nurse may have said all she said. Most oncology nurses I have met personally and worked with professionally are empathetic

and very caring. It takes a special person to specialize in oncology. I obviously cannot vouch for them all. If you truly feel your nurse should not have spoken to you in the way that they did then feel free to express your concerns with the nurse in a constructive manner and I am certain they will amend their style of “assessment” with you. Good luck♥️

[Meatloaf9]

Hi, if you feel that the nurse was disrespectful or condescending to you then you should either speak to her or her physician or even an administrator about the situation if you feel that strongly about it. I wouldn't hesitate to speak up, at my old age and having PV I really don't worry about offending disrespectful people.