Whoop-whoop- this too happened to my hubby's O&A&V treatment- after 15 months he is in remission- so happy for you too - please don't forget to drink your water (my hubby does 3 liters a day) with your venetoclax
Wonderful!! Time to celebrate 🥂🎉 💪 I know that feeling to feel almost normal again after all those infusions. Hope all the best for the sprint to the finish line with the V.
That's a big turn around as I know how misserable it has been. How long have you been feeling better? I have #8 infusion in 10 days. So I am not too far behind you.
Yes, it has been huge. I was at 2 1/2-3 months in before I felt a ton better. My frustration was that my doc said at the beginning of the week of my first infusion "you'll be feeling great by weeks end". My second opinion doc said it would be 2-3 months so she was accurate.
Hbg at start of treatment was 12.4 and its now 16!
Platelets were in the 70's now they are 120K
Neutrophils have double and are back in normal range.
Nausea is about once per week that I need meds.
The biggest problem now is just getting the bowels into normal as opposed to constipation/diarrhea cycles.
Jammin_Me and skipro , there's currently a bug so you can't add images (normally done via the landscape photo icon, bottom right under the post/reply) to replies, just to posts. The Help documentation asks that images be under 2MBytes in size, so if you have trouble, you might need to first reduce the image size. I find that keeping images with dimensions within the range of 800 to 1,000 pixels works fine.
Awww this is so inspiring, I really see you all like Champions. I am a wimp & just hope when I need ‘combination threatment’ that I’ll just go for it🙏🏾 Well may you enjoy a lifetime remission🎉🎉🎉
Thank you for posting; it makes me feel good to read of someone who is feeling and doing much better after treatment.
Congratulations too on the physical activity you and your wife are able to do. It will only of course make you even better. I can't do those things anymore. I'm 76 and five years Watch and Wait, and getting sick without beating it for long periods of time.
My fatigue of course is too much to even think about Donut Falls, maybe for me instead I'll try Dunkin Donuts. At least my weight is down about forty pounds from where it was a year and a half ago.
I fear thoughts of starting IVIG, so I resisted it when mentioned last week at a six month evaluation. I fear treatment if and when it comes even more, so to read of your battle and now success with treatment is encouraging.
I know this question is out of your area of expertise, but I'd still appreciate your input on it. Any of our other members can also kick in with replies, if you have any knowledge of what I'm referring to with IVIG.
I started to Google about IVIG, because the concept of starting it has been brought up to me by my local Oncologist on this very recent six month visit and also on the one six months before that. I told her I wanted to hold out and see how I continue to do, but I'll likely bring it up with my main Oncologist in Boston who I also see every six months, and whom I'll see first week in September.
Aside from the huge expense, which I'm not sure but might be over ten thousand dollars per infusion, I read there were minor side effects including some headaches and other non lethal things. One thing however I found in one medical oriented website said something about long term use possibly leading to Renal Failure. Do you Mike or any other knowledgeable people on our site have any input on the Renal Failure issue?
As far as the cost I'm truly not aware of the accuracy, but one website I found indicated treatments ran between ten and thirty thousand dollars. I'm not sure now if that was per treatment or annual. In any case I have a Medicare Supplement that has a Deductible of $2700, so the worst I would lose is the $2700 per year. So cost isn't a horrible thing for me.
Just want to point out that in the US, when talking about deductibles and copays and such, the documents refer to *covered services, procedures, drugs, DME's etc. * Just because something is a medical cost, if it's not a covered item, your deductible, or out of pocket max, or whatever, may not apply. Not intending to disrail your thread or imply any IVIG may not be covered, just, noticed you make a blanket statement about Medicare insurance that appeared to be somewhat incorrect. Medicare insurance (and all insurance in the US) policies are complicated, and deductibles may not apply to drug costs. It's all in the wording of the policy, the thoe of policy you have. On my plan, the deductible is relevant only to medical procedures and the billing codes associated with them, my Part D (dispensed medication) and what I have to pay for drugs from retail pharmacies are totally separate from my deductible and any inpatient/outpatient procedures. An IVIG infusion done at a clinic may be billed totally differently than an SCIG infusion done at home. There can be differences in billing between inpatient procedures, outpatient procedures, and Part D administered drugs.
Please show the link from the medical oriented website where you think they are discussing renal failure from IVIG. It's so helpful to see what you have read and are now asking about.
Please note in the link below there is a reference early on to "covered healthcare services". You could have an elective procedure that technically is a medical thing, but if it's not covered under your plan, not only will the insurance not pay, none of what you pay for it applies towards your deductible.
The fees you are reading about refer to each treatment. IVIG is very expensive. It's life saving for people who need it. If your doc thinks the risk of renal side effects/ disease outweighs the risk of serious infection/sepsis, you need to consider this before deciding whether to reject a treatment. You *are* really smart to be asking questions, I would be too. There's a number of people who blithely let their doctor make all the decisions. While this is not necessarily a "bad" thing, the data says "informed patients have better outcomes" overall.
I think people like you and many of us here, gaining information to make an informed decision, have the best possible outcomes we can.
There is some older information tracing a higher incidence of renal problems to sucrose containing IVIG formulations. If this is what you are seeing, I think the stats/risks are different in the decades since that risk factor has been identified. Here's a link to risk factors and side effects in 2010:
Thank you as always for your extremely thorough and highly knowledgeable replies.
My work is Medicare, so of course I didn't misunderstand whether or not coverage is covered for IVIG, or whether deductibles work the same for Part A and B benefits compared to Part D. When I referred to the $2,700 Deductible on my policy, I have a Medicare Supplement; so, Original Medicare A and B is my Primary coverage and the Supplement is the Secondary. IVIG treatments I would be considering would be done as an Outpatient at the Cancer Center, so it would be covered under Medicare Part B and not D. That is a very critical difference between a cost that is due to a self administered drug through injection. When a drug is injected or infused in a Clinical setting, such as the Cancer Center, it is always covered under Medicare Part B. Medicare would thus cover 80% of Allowable charges and I would be subject to the 20%. Since I have a Supplement as a Secondary, the Supplement covers the 20%. In my case I use the High Deductible F Supplement which in 2023 has a $2,700 annual deductible; thus, my only economic risk in any year is the $2,700.
This is so different from medications covered under Part D, which would be the insurance if a person self administered an injection at home. Part D has NO STOP LOSS; thus, the truly expensive medications can monetarily greatly hurt a Medicare Beneficiary. Since we can't buy a Supplement for Part D expenses, the greatest danger monetarily on Medicare is actually prescriptions and not hospital or medical or surgical (Part A and B expenses that are covered by a Supplement).
One of the truly happy and bright things on the horizon in 2024, for all of you on Medicare who are reading this, is the new change to Part D Rx plans. We finally will get a very huge relief to the horrendous expense of our Novel Targeted Theraputic CLL pills. In 2024 Medicare has removed the Catestrophic Stage of Part D Rx Coverage. I probably should help everyone with a post I make on that, so it can be fully understood, but it does mean we will be saved many thousands of dollars.
As far as the Renal Failure thing with IVIG, I only saw one reference on one site. I didn't try to research it further, but if I can find the site again I'll put the link as another reply in this post.
I don't think this is the article that I saw the other day, but it does go into more about IVIG and Renal Failure. It is an older article however. It is from the NIH National Library of Medicine.
Intravenous immunoglobulin induced-nephropathy: a complication of IVIG therapy
N Ahsan 1
Affiliations expand
PMID: 9650125
Abstract
Since the early 1950s, intravenous immunoglobulin (IVIG) preparations are being used in the treatment of hematologic, neurologic, nephrologic, autoimmune, and immunodeficiency disorders. Infusion of IVIG preparations may cause osmotic-induced acute renal failure. Despite the fact that this entity has been reported previously, it is not a widely appreciated complication. A total of 22 reports involving 52 patients in whom renal failure occurred in association with IVIG infusion. The patients' ages ranged from 20 to 82 years. Thirty patients had preexisting renal insufficiency. Rise in serum creatinine was noted after 1-10 days of IVIG infusion and creatinine returned to baseline within 2-60 days of discontinuation. One developed end stage renal disease. There were four fatalities related to complications of renal failure. Histopathology of renal tissue showed osmotically induced tubular injury (5 patients), tubular vacuolization (2 patients), tubulointerstitial infiltrate (1 patient), and cryoglobulin deposits (1 patient). There appears to be no direct relationship between the development of acute renal failure and the type of IVIG. However, underlying renal insufficiency increases the risk of renal failure. In view of the increasing use of IVIG preparations in medicine, it is imperative that clinicians be aware of this unusual form renal injury.
I did HomeCare IV Infusions & I never heard of Renal Failure as a side effect. What I do remember is some people can’t tolerate it. Some patients would go completely pale, nauseous, well a kid vomited, drop in blood pressure & close to fainting. Even IV Site infection/inflammation. I would have to remind the patient to stay extra hydrated 24hrs before & have a good breakfast plus a meal during the procedure.
So yes Tylenol & Benedryl 30-60 min prior to infusion. Yes the Infusions are expensive & we can not open or mix the product until we have a stable patent IV in place or we could be charged $1500 if it has to be wasted. The infusions can go from 3hrs-8hrs per session. They are usually given every 2-4 weeks. The pump alone is $5000. I only heard how good patients felt the day after because they usually are groggy for that infusion day but tons of energy the next day. Do your own research & write down all your questions to ask. Best of luck, #GODSPEED🙏🏾
I am only going to consider the infusions given in my local Cancer Center, if I decide to start with IVIG. I'd feel much safer for one thing, in case I did have some bad side effects. I also don't like the idea of having my home become part of my treatment, as opposed to going into the Center every three to four weeks.
I totally understand & most of my patients did do their initial infusions at a center & a few more until comfortable. I loved doing IVIG infusions as oppose to the multiple lab draws & sterile central line dressing changes. We would go slow because I did not want any issues but as we mutually got more comfortable with the Home Infusion, we could speed up a bit all based on tolerance. It was very comfortable & convenient at the different homes. I remember this one guy had all the new movies like being at the movie theater. This one couple had a very modern house like the Jetson’s & the husband would cook me anything I wanted. It was like a ‘work family’. I really loved my job but Covid messed it up & woke up my CLL😡
My oncologist keeps the Nadir above 600. It doesn't make sense in an already immune compromised person who's B cells don't make antibodies WHY the target is BELOW NORMAL.
Today I was supposed to get an infusion but my level was 766 so cancelled by my nurse "incase Medicare denied it and I had to pay about 8 grand down the road".
What do you understand or recommend for a Nadir level for dosing?
Do you know if there is a Medicare cut-off point for the Nadir, in order to have the infusion covered?
To *initiate* treatment, Medicare demands the level be below 600 in CLL patients, or there be documented infections. I do not know how or if, an interim level higher than 600 affects payment, since the payment guidelines do not state this. I am thinking it is not relevant to CLL; IVIG continued use in *other disease states* has recommendations regarding continued use and levels for continued payment approval .
I personally would not allow "the nurse" to arbitrarily decide to cancel an infusion. It does not affect the nurse or the facility, whether or not I personally got charged for something months down the line! This is something that does not affect the nurse and IMO only the patient should be the person to decline a treatment for any monetary considerations.
I hope you’ll forgive me tagging this U.K. criteria on here but I feel it may be useful to our U.K. members who are wondering whether they meet the criteria for IVIG under the NHS. There were two keys changes in the eligibility criteria;
1) reduction in the IgG level from <5g/L to <4g/L
2) oral prophylaxis changed from 3 month trial to a 6 month trial prior to ivIG.
No I am an RN for 31yrs & Critical Care from 2000-2021. I never administered IVIG to any cancer patients so not clear on the parameters. I was actually surprised when my Oncologist suggested it for me since I was not taking the Covid vaccine. I asked her the criteria & she said if you have frequent infections. And I told her that, that wasn’t me so we tabled that discussion. My IVIG patients had Neurological Autoimmune Diseases & 1 younster had AIDS from a contaminated blood transfusion in another country as a baby. I live alone, work on zoom & stay double masked when out so I don’t get sick much even when I was in W&W 13yrs 8mos. That is how I knew when I entered Stage 4 before the bloodwork results. Repeated Sinus Infections that lasted 6-10 weeks & required multiple antibiotics. Wizzard 166 found an interesting article relating the potential for renal failure with IVIG. Again so happy for your progress🙌🏾
Yes after May 2022, a 8 week Sinusitis attack my WBC doubled by Oct 2022 49->89. I was at WBC 20 for 10yrs (2009-2019) but after Covid hit the world, My spleen area was painful daily. Then Platelets dropped followed by Hemoglobin. All the Natural Stuff wasn’t working anymore. I consented to try Zanubrutinib full dose but ended up in the ER after 13days, when I wasn’t hospitalized for 13yrs 8mos on W&W. Now on Acalabrutinib 100mg daily with WBC down to 40 after 8 weeks, Hgb 11.2 & Plts 84, slow progress but I will take it. I don’t want any transfusions or IVIG, that’s just me. I stay isolated working on Zoom & double masked when out🤷🏽♀️ The muscle pain is easing up too but I did see a painful bruise yesterday 🤦🏽♀️I haven’t resumed my exercise regimen yet which adds to my anxiety but thank GOD…
I found it to be very strong but I was treatment naive & bought into how mild it would be. So day 3 on Zanubrutinib I taught my 60min intense Low Impact Class without issue. Days 4-11 I had the mouth sores, irritated rectum, burning feet & painful tingling in my fingers. Also a big hematoma on day 7 that dropped my 10.8 Hgb to 10 but WBC 81-118 & Plts 76-108. By Day 12 I had gout like pains bad in all my joints but bear in mind I have Bilateral Total Knee Replacements, Malunioned Fractured Left Hip, Bilateral Rotator Cuff Tears with only Right Arthroscopy, Cervical Lumbar Radiculopathy & Sciatica. So all of those areas were throbbing like crazy. So I did what I would usually do to stop pain & that’s workout in my Homegym. So Friday 5/5 I walked 45min on my Treadclimber under 1mile/hr & felt better. Then Sat 5/6 I did 60min on my Stationary Bike but developed chestpain. After 3 hrs of solid left chest pain off to the ER. They did a wonderful Cardiac Work Up but when the CT Scan said ‘Bibasilar Subsegmental Dependent Atelectasis’ they said my lungs were not collapsing & that I simply needed to Deep Breath. When the 9/10 pain dropped to 3/10 I was ready to go. 22hrs later 5/8 I am in front of my Oncologist & the chestpain was back 8/10. He tells me that ‘Chestpain isn’t a listed side effect’ he then ask if I am sure it is chestpain & not epigastric pain? He just wants me to restart Zanubrutinib & never assesses me at all, won’t even put on a mask in his exam room. I tell him I won’t be resuming a medication I believe started this & not even half dose. I insist on Acalabrutinib & he goes into that he is not sure if my insurance will approve it. I have Federal Aetna & I tell him not to worry about that because the Pharmacist is more than capable to handle this area. I leave him & can’t see my Pulmonologist until the next day.
48hrs after my ER discharge in my Pulmonologist office I decompensate, I can’t walk & I need oxygen. He refused to prescribe antibiotics or steroids because he is ‘not comfortable’ but wants to prescribe Tylenol #3. I say this is how you have always treated me with my history of Asthma. Very cold & uncooperative. My son gets me home & puts me on my Nebulizer but its not helping. So I return to the ER by Ambulance. That left chest pleurisy has advanced to Left Pleural Effusion/Pneumonia & my lungs collapsing. This was one of my worst days next to contracting Covid Pneumonia April 2021.
My lungs are now scarred & I just did a Pulmonary Function Test. It wasn’t the Cancer or the Chemo that did this much damage but the Racial Bias Treatment of the Medical System in the USA. I am on 1/2 dose of Acalabrutinib & more paranoid then ever. I just started Psychological Therapy too because it is hard to wrap my brain around what happen & could of happened to me. But GOD…
Yes I know Zanubrutinib is as effective or more than Ibrutinib without the cardiac side effects but I am happy with Acalabrutinib & will advance to full dose when the labs say so. Last labs WBC 40’s, Plts 82 & Hgb 11.2. I want to see WBC further down & Plts higher but I am satisfied for now. I am just learning how to function with these infrequent headaches & muscle pain. Energy is better & I can sleep better too. Lymph nodes are way down too. I can stay right here for a decade or two or three. I still believe in my Natural Remedies of 1.5 liters of Lemon Water, 16oz of Cold Press Juice & Dandelion Tea with Moringa Powder as breakfast every day! 100% Plantbased Organic Wholefood diet with Supplements. I think I found my Sweet Spot but just want to resume my exercise regimen near where I was🙌🏾
What is your Lymphocyte count now? As you improve (hopefully), your absolute Lymphocyte count (ALC) is very relevant and the white blood cell count less so.
I am glad you are feeling better.
I also had poor care for a pleural effusion. Mine developed as a result of a cycling accident. I had a follow-up appointment with an ER doctor but the follow-up chest X-ray was taken after I saw the ER doctor. So the ER doctor never mentioned the pleural effusion at the visit. Nor was it mentioned at the original ER visit.
I read the follow-up xray report and it noted a pleural infusion. I had no idea what that was and I had no instructions on what I should do as a patient. I looked up Dr. Google who said I should be closely watched under a physician’s care. I called the ER back and I was told to leave a messsge for the ER doctor. I did this twice.
Finally I went to the urgent care offered at the same hospital. I had barely got the words pleural effusion out of my mouth when the physician called for a wheelchair and had me rushed to the ER with my husband trotting along behind.
At the ER, I was chastised by the head of the ER department for coming back to the ER. I was quite angry but recognized this as a circle-the- wagons moment.
It turns out that all I needed to do was rest and over time it would go away. I was finally given instructions on what to look for that would be a sign of trouble brewing.
I did receive a weak apology that someone should have called me back and that they were very busy. But five ER physicians were available to circle-the-wagons.
I am so sorry to hear about your ordeal, that’s terrible. I hear you all but without differential labs drawn or a copy given which I don’t have the energy to push for all the time, I rely on WBCs. My ALC is presently 47.66. The devil is in the details, I am improving & have maintained my sanity which is my single focus. I listen to my body over all the technical stuff because that is how I was first diagnosed. I told my doctors something was wrong & after a year of testing nothing jumped out until July 2009 a large lymph node popped out my neck & waved lol. Biopsy done & in August 2009 my life changed. So thankful for the 13yrs 8 mos of W&W because I don’t know how I would of managed working full time (2 jobs) raising & sending 3 kids to college as a single Mom. Now retired & kids grown so I am thankful for the CLL treatments although I want very little of them lol.
I am a Certified Group Fitness Instructor & Certified Nutrition Coach plus CDC NDPP Lifestyle Coach. I focus more on prevention since Obesity, Hypertension, High Cholesterol & Diabetes contribute negatively to life. I can’t control cancer but I can help limit the comorbities. So much is spent on drugs & very little on prevention. I want to pursue 1 more career & that is of a Legal Nurse Consultation. I want to advocate for those that can’t do it for themselves. May we all grow in knowledge & in grace🙏🏾
Listen they all come with side effects, the question is your tolerance. This 1/2 dose, 1 100mg of Acalabrutinib every day is still kicking my butt! I had bad headaches for 2 weeks straight since I don’t do caffeine because of the palpitations I get. I was very fatigued & even though its lightening up there are days I feel like I got hit by a truck. I envision that if it is cleaning the bone marrow that’s probably why the skeletal muscle is so painful for me. I wake up feeling like I did an intensive workout already, every morning. Full Disclosure, I am feeling belly pain, possibility that the lymph nodes or spleen/liver are not responding as well as with Zanubrutinib. I even felt some rapid heartbeats, fib/flutter once so we will see. Zanubrutinib is the best for dose reduction. I believe I did not allow my body to adjust to Zanubrutinib before trying to resume my standard workouts. And the reasonable distrust of my Oncologist clouded my judgement. I think Zanubrutinib would be a better choice because this possible afib/aflutter symptom that I felt has been worked out better on their 3rd attempt, 3rd generation Zanubrutinib. How bad is Ven? I wish the best luck & what to hear if you do swap out…
I chose my doc because she's a world famous expert, but I can rarely see her to discuss anything and I feel like my medical knowledge is more advanced than her PA's and now this doc is taking a job back East
Even so, when treatment was decided I felt bullied by her fellow who was supported by my doc without any meaningful discussion and I was so ill from CLL that I was ready to do anything to feel better
So I'll be looking for a new doc that I can have an intelligent conversation about which treatment best matches my expectations
I just kept hearing how much less AE's were with ZANU or Acal that I've wanted to switch
But my NP keeps saying to give it a few more weeks
I too have lost significant energy even though I am no longer anemic. I too wake up with aches and pains like I did a super hard workout the day before and nausea every day. Plus I hear V +O is so much more immune toxic and this comes after 3 years of hell due to COVID concerns and my wife's anti mask stance that led to horrific loneliness and other sequela her behavior led certain other family members to believe about my safety recommendations
I'm just looking for a break from all of this and V + O hasn't provided it
This makes me very sad to read because I feel exactly the same 😭. I am just glad I listened to some of the amazing people here & got started while I was strong. If I am completely honest, I know that my expectations are unrealistic because I still can’t accept that this is my life. We can only make the best decision based on the facts available & how our body reacts. I also think that being a medical professional works against us because we still think that we are in charge. We have to surrender & put that power back in GOD’s Hands. The short duration treatments seems like hell but then it allows for more drug free days/months/years. I just have more questions than answers & jumping from one treatment to another is not making me feel more comfortable 🤦🏽♀️ I have reached out to an CLL expert also who has just opened an office closer to me. Instead of 2hrs away in Long Island, NY she’ll be in NJ 30 minutes from me in Staten Island, NY. Acalabrutinib is promised to be easier tolerated but will it be effective? Zanubrutinib I feel is the better choice especially after Ven. We have a lot to be thankful for & I feel guilty complaining when I lost so many people to cancer. They did not have these choices so I am fighting to stay positive & I want to encourage you too. Go through the bad but focus on the good🙌🏾
it's gamma globulin or in medical terms Immunoglobulin G
These are basically the types of antibody storage units from other people because with CLL we may make little or none
So basically a big boost to your immune system against various types of infections that you might otherwise catch, and become very I'll from for long periods of time
I had IVIG monthly for a year when I started my CLL treatment and they were a no nonsense affair. No preparation, no Benadryl or any other kind of med before or after and they usually took less than 2 hrs after the first infusion (which was naturally given more slowly to assess reaction). Had a bit of fatigue afterwards but nothing debilitating.
Cost and a change in criteria means I no longer qualify on the NHS.
Great news Skipro and so pleased to hear you’re feeling so well and positive! 👍
Congratulations on feeling so much better. It is amazing how much more positive and upbeat you sound than what you have in the past. I’m glad you are doing well.
What I meant to say was this. I expected a much easier time with O & V regimen. Sometimes the side effects seem to be never ending! I am about two weeks behind you. Have suffered many of the same side effects. Based on what I have gleened from your posts.
No, I am not planning to jump to another treatment or reduce dosage. But I sure spend more time than I would like thinking about it. I just do not want to waste a treatment regimen by discarding this one. Plus there is no guarantee my system would tolerate the next one any better.
Sorry about the prior garbled message. Some days when I am feeling pretty crappy. I should stay away from my smart phone and thumb typing.
Wow you said what I meant using way less words. This is definitely a Special New Club & its good to meet like minded real people. This shit ain’t easy altho I am glad to be alive🥳 Please believe if I could leave this situation I would…
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Update #3 Treatment Begins
Has anyone experienced leg swelling?
Drug Trial update - Gazyva with TGR-1202
A071402 Phase 3 clinical trial - Obinituzumab+Ibrutinib+Venetoclax
Starting Venetoclax on Wednesday 
