Treatment in Hawaii

[Cfarrar]

Aloha! Wondering if there is anyone who has or is getting V+O treatment on the Big Island. Could you share with me your experience? I’m worried once I need treatment the care here will be subpar and will force me to have to fly to Oahu. Mahalo nui for your help!

[Pacificview]

I will respond, although I am not on the Island. But I am in the 2nd cycle of O & V.Whatever facility administers the treatment. They are going to follow treatment protocol. The drug trials figured it all out years ago...CLL 14. Over 200 patients receiving O &V.

So everything that could happened has pretty much happened and there is a protocol for dealing with it if it does.

Its a very straight forward treatment and infusions can be done very safely at a local infusion center. As for the Venetoclax, its a simple pill ramp up over 4 weeks.

Small town infusion center can handle the O.

If your high risk, a local hospital could certainly handle things. Most patients get through the O & V with just minor hiccups.

Hope this helps while your waiting for an islander.

John

[Cfarrar in reply to Pacificview]

Mahalo John for responding! This is actually really good news!

[keikikumu]

Aloha Cfarrar! My husband is receiving V+O here on Oahu. He has been going to Queens Hospital (town) for the O infusions. The V's are, as Pacificview mentions, just a pill that I can't imagine would be a problem to receive on the Big Island. I would think that talking with your oncologist over there will reassure you that both treatments are actually easily accessible. And Happy Lei Day! 🌺

[Cfarrar in reply to keikikumu]

Aloha! I know the Queens Hospital all too well. Good to know! Mahalo!

[Jujy]

Based on the almost-routine reactions to the first Obinutuzumab infusion, you might consider doing it where the staff has more experience with V&O. We considered moving back to our local hospital for subsequent infusions, V ramp-up, and ongoing bloodwork but my husband prefers the specialist.

[Cfarrar in reply to Jujy]

can you share with me the “almost routine reactions” you are referring to? I do know there are no specialists in Hawaii, but wondering too if I only needed to move back to the mainland for a certain amount of time for the infusions but the rest of the live in Hawaii is that even doable?

[SofiaDeo in reply to Cfarrar]

Infusion reactions to large molecules like immune globulin and the monoclonal anibodies (MAB's) like obinituzumab are common and to be expected IMO. There is a standard physiological reaction that *virtually everyone* has, when a large molecule is infused. The extent of the reaction, and symptoms, is where we differ. So some people don't have a lot of symptoms, and others do, even though the exact same initial response is going on. The extent of the reaction changes from person to person. We premedicate, and thus many do not experience extreme symptoms of the physiological response. But some folks react more strongly, or need more premeds, or need a slower rate of infusion to dampen the reaction.

If there are nurses and docs experienced in ICU and oncology, they can manage the reactions, even if they have never given the exact drug before. If the hospital/clinic you are considering has an Urgent Care, ICU, ER, or oncology section with trained nurses, it shouldn't be a problem. I could see a potential problem in very rural areas without proper monitoring equipment. They need to be able to do ECG, they need a crash cart; ambu-bags and able to administer oxygen and epinephrine and other commonly used emergency medicines. They need to be able to do STAT blood gases and other STAT labs. If they have this, it should not be a huge problem.

The "infusion reaction" response is pretty much the same across any large molecule, with patients varying their response from drug to drug, as well as the drugs' potential to cause a severe reaction.. But the type of "infusion reactions" are pretty standard, and have been managed in medicine for decades. It's just if a new drug that happens to also have these potential reactions, is something docs and RN's need to learn when new drugs come on to the market.

cancer.org/treatment/treatm...

Monoclonal antibodies like obinutuzumab are known to cause these types of reactions, and the incidence/ severity can change with the drug. If you open the table in the link, you will see that obinituzumab very commonly causes these reactions. The docs are prepared, they know what to watch for, they premedicate, and they know what to do as a patient reacts. Many patients do not react as strongly with subsequent infusions; the body has "learned" that this particular thing isn't a severe threat, and the reaction isn't as severe. Occasionally people do continue to react so strongly that the decision is made not to continue with a drug.

ncbi.nlm.nih.gov/pmc/articl...

Intelligent, conscientious nurses can manage initial reactions even if not "experienced". I remember one unique situation when I was working on an oncology floor of a large medical center. The ICU's (we had multiple) and ER's were so full, it was decided to move one patient that needed an immune globulin infusion onto the oncology floor to do it. This was mmm 35? years ago before we had MAB treatments, or step-down units in cardiology, with RN's trained to intensively watch/adjust monitors outside the ICU/ER. The RN's were used to giving standard chemo injections and infusions, watching for nausea/vomiting and signs of infection, giving antibiotics. So there were occasional anaphylactic-type reactions, but not often. They didn't have MAB's back then, and unless they had been exposed through an ER or ICU rotation/job, didn't have experience with immune globulin. I remember the RN's coming to me, saying they had no experience and what should they watch out for. We discussed the potential problems, what to watch for, and they successfully managed the patient before he got tranferred back to an open ICU bed. He did have some reaction, they did have to adjust his infusion/give more premeds. But they did fine, even though they hadn't had a great deal of experience and were initially apprehensive. They were trained to learn and adjust quickly, when the unexpected occurs. If you are going to a hospital or larger clinic, you should be fine.

[Cfarrar in reply to SofiaDeo]

Mahalo for this information, so helpful!

[TruthJunkie in reply to Cfarrar]

CLL specialist from Fred Hutch in Seattle told me that there was no need to move back to Mainland for care, but I am on Oahu (as you know). I started on Zanubrutinib in March, and could have Obinituzumab infusions under my local hematologist/oncologist’s care at Straub or Pali Momi. Best wishes to you, always. Suzanne

[Cfarrar in reply to TruthJunkie]

that’s great news, I wonder if Straub is better than Kaiser? I’m am worried about TLS and them not being prepared. I’m candidate for V+O because of my markers and age. It’s a little scary vs BTK inhibitors. Thanks for sharing!

[SofiaDeo in reply to Cfarrar]

I would think an infusion reaction would be more "urgent". TLS is generally more of an urgent concern with certain acute leukemias. If you take the premeds, drink the water as required (not double, just, as required) and get your labwork done, the risk of a permanent problem is very low. Report earlier to the doc if you feel ill. One can have a diagnosis of TLS without permanent damage. The idea is to make sure the protocol is followed. For me, my PO4 started rising, the IV rate was increased. Labs were taken every 6 hours instead of 8, I was hospitalized 4 nights as a precaution instead of 2. They were making sure I was stable, not that anything really serious was going on.

my.clevelandclinic.org/heal...

[Cfarrar in reply to SofiaDeo]

Mahalo Sofia, always so helpful!

[AussieNeil Partner Administrator in reply to Cfarrar]

I've just posted about Tumor Lysis Syndrome here, with specific reference to the use of venetoclax and obinutuzumab for CLL, along with a link to a Leukemia and Lymphoma Society interview about TLS in general healthunlocked.com/cllsuppo...

As SofiaDeo says, if you follow treatment recommendations, in particular regarding having sufficient, not excessive fluid intake before you start your meds, TLS is unlikely and if encountered, treatable with no permanent damage if you seek urgent medical support. Taking the time to familiarise yourself with how TLS can happen and how to detect and treat it will stand you in good stead.

Neil

[Jujy]

I should not have used the word routine. It seems many patients react to the first infusions. If this happens, the infusion is stopped and the pre-meds are adjusted. After this, all the infusions should be smooth sailing.