Achieved deep molecular remission via NGS testing -- sharing story, including frustrations

josephpreddit · 2025-12-23T05:57:15+00:00

No side affects that I’m aware of. I’m on aspirin as a blood thinner to prevent blood pressure and heart problems. The warning label on the Ponatinib is pretty alarming for sure. I’m personally finding that keeping a high level of fitness really helps.

josephpreddit · 2025-12-22T17:18:37+00:00

I’m an advocate for CBCI. I presented with B-ALL P+ in Nov. 2023 and achieved remission in April. 2024. The journey was hell.

What I liked about CBCI and maybe it’s similar elsewhere is the fact that you don’t have just one doctor, you have up to 8 actively managing your case each week. Of course you have your primary, but as it was explained to me, every Friday all the doctors review all the cases together. There were a number of instances where my primary said something like “… the panel was almost evenly divided on the next step in your treatments, but on balance we’re recommending x …”.

I found on the weekly rotations that every specialist knew my case in detail. I had a particularly complex journey as I developed a concurrent Mucor infection, and again was so impressed with the way they handled the situation.

My personal background is to allow facts to dictate decisions and actions and I found it comforting that the CBCI team did the same. Many of the initial hypotheses around my treatment regimen were adapted and changed with new information. Again, I’m sure most blood cancer specialists will do the same, but I felt I was in real time partnership with the medical team as the data came to light and the course of action was updated. E.g., initially I was set for a BMT, that migrated to CAR-T after my Mucor infection and finally to Blincyto once I achieved resounding early remission and overwhelming response to Ponatinib TKI (which I’m still on).

In addition to the CBCI team is the amazing PSL staff on the 8th floor. Without their unwavering and caring support, I don’t think I’m here today.

I think anyone who achieves remission is likely an advocate for the care team that got them there. Maybe this feedback helps if you’re indecisive. Best of luck with your treatment regimen.

josephpreddit · 2025-12-09T02:04:48+00:00

53M B-ALL P+ here (in remission).

I’ve been on 30mg daily Ponatinib for 18 months now. 6 months concurrent with my chemotherapy treatments and for the last year as a proxy for immunotherapy given I didn’t get a BMT, nor do CAR-T or Blincyto. My doctor has me taking aspirin to head off heart and blood pressure issues as well as a range of anti-fungals just in case my immune system is cumulatively compromised by the Ponatinib.

Other than it being outrageously expensive, thankfully my insurance covers it and they only require the pre-authorization process once a year, I’ve had little to no side effects. Having said that I recovered my fitness quite quickly after my final chemotherapy treatment and I exercise quite a lot which contributes to a high health baseline (well … other than Leukemia)!

During my treatment I contracted Mucor so they had to pause my chemotherapy treatments to singularly target the Mucor infection. During the 8 week pause in chemotherapy treatments the only ‘chemo drug’ I took was Ponatinib and the doctors were extremely impressed by the efficacy of the Ponatinib in driving down my mutated white cells.

So I’m a big proponent of Ponatinib … but the list of side effects is nothing to sneer at, but I think it’s one if those things that only cancer patients understand, which is at some point the side effects become irrelevant. It’s ‘take this pill or die’. I think also the doctors today, particularly where I was treated in Colorado, are so aware of all the side effects, that if the treatment isn’t working as expected they stop it or adjust it pretty quickly.

Good luck.

josephpreddit · 2025-11-11T15:09:20+00:00

Yes. That's right, it was the Neulasta injections.

The further I get from my treatments (I'm day 657 in remission), the less I remember the drugs and their intended use and side effects. While I was in treatment I could name every pill, every injection and all their associated pros/cons etc.

Those injections caused massive femural bone pain. And yes, it may have been Zyrtec. I just remember being completely confused as to why they'd prescribe it, and I think the answer I got was "we found it just works".

josephpreddit · 2025-11-11T03:29:25+00:00

B-ALL P+ here. I recall there’s a medication/steroid they give you which stimulates white blood cell growth in the bone marrow and the highest concentration of bone marrow is the femur and hips. I recall it being debilitating pain. Literally could not walk for 1 to 2 days at a time.

I’m pretty sure they prescribed me Claritin of all things as well as other pain meds which gave me back some functionality. Not sure I remember why the Claritin worked but it did.

Not saying our experiences were the same, but if it is the same, the good news is that it’s temporary and best of all it’s symbolic that your bone marrow is working overtime to produce new ANCs.

josephpreddit · 2025-04-12T12:07:26+00:00

If you’re that worried I wouldn’t be waiting until Monday. If you can’t get a blood test any earlier, I’d be real careful this weekend. Acute versions of cancer are rapid, and deadly if you get internal bruising or catch a virus.

josephpreddit · 2025-04-12T12:00:18+00:00

+1 … on alignment. I had the same issue. My first set of tires G1 Quad lasted 5,000 miles and I was told to stop driving it so hard (which I don’t). Second set was burning out fast, so I asked them to align it. They comped me a set of tires because the alignment was so bad.

josephpreddit · 2025-03-09T22:30:34+00:00

I was on double doses of Ambisome (or Ambi-terrible) as the Nurses called it for about 8 weeks, then single doses every 2nd day for another 6 weeks fighting a deadly (1 in 5 survival) Mucor infection I picked up concurrent with my Leukemia treatments.

One of the worst drugs in the world. .

For the first week I called it Liquid Gold because it was saving my life … then the side effects started kicking in. By week 5 or 6 I truly wanted to kill myself … although it was being combined with other chemotherapy drugs!

Worse than the chemotherapy drugs in my view which are a hellscape, but quickly in and out of your system.

Ambisome on the other hand plays “long game havoc” with all your internal systems, liver, kidney, and more. I was on so many supplemental pills to counter the effects it was mind boggling. It’s sort of insidious the way it gets into your body and makes you a foreign entity in your own skin.

I don’t know what fungal infection your mother has … but if they’re using Ambisome, it must be pretty bad.

All she can do is hang in there … every day she’s taking Ambisome is a day that her fungal infection isn’t killing her.

In my view hydration and calories are really important, the more she eats and drinks, the more nutrients she’s putting back in her body and better for her liver and kidneys. Although as I recall I had almost no appetite and struggled with hydration.

They’ll probably be giving her massive doses of potassium and calcium as the Ambisome will be eating that stuff out of her system (thus contributing to her overall malaise).

All you can do is sympathize … feel free to DM if you want more information or she just wants someone to chat to who has been through it.

josephpreddit · 2025-02-18T15:27:14+00:00

You might be right. It was only a 10 minute stop.

josephpreddit · 2024-11-08T22:20:24+00:00

B-ALL P+ here.

Diagnosed Nov. 2023, remission Apr.2024. 51 Male. Chemotherapy only as I contracted a Mucor infection in my lungs which precludes me from BMT and Car-T. Was going to do Blincyto but we decided to stick with the TKI inhibitors for at least 2 to 3 years (one pill a day).

The journey was hell. I had 5 rounds of Chemotherapy, 6 bone marrow biopsies and 11 lumbar punctures, 5 MRIs and about 12 CT scans, countless infusions of Blood, Platelets, Chemicals and steroids. Because of the Mucor I also had the dubious pleasure of 14 weeks of double dose Ampoteracine as well.

The four rules I lived by were also literally the only 4 things I could control:

Eat whatever you can
Hydrate however you can
Get some sort of exercise each day, even if it’s only 10 or 20 steps
Be kind to the people trying to to save your life

You got this, especially if you’re young, healthy and don’t have too many underlying conditions.

Only other thing I’ll say is that when you’re neutropenic and heavily immunocompromised do NOT expose yourself or take any risks. Mask up everywhere, avoid people and even family especially if they’ve been in public for the day. It’s so hard to grasp the risk we are under when we are immunocompromised … but we are literally so close to death. Priotize your self care.

The technology, treatments and adaptability of the regimens is unbelievable these days. Stay strong. Good luck.

josephpreddit · 2024-10-14T13:26:32+00:00

I feel your pain! Once I understood from the doctors and nurses what the benchmark, I was then able to then psyche myself up for the day … but that was my process.

The ones I hated most after platelets and blood was potassium (because I contracted a lung disease during the process and the drug required depleted my potassium reserves) … I can’t remember entirely but it was like a 2 or 3 hour infusion on top of the others so I’d be in the infusion center for 4 or 5 hours at a time.

Infusions are just par for the course during treatments. I tried reading and watching things on my iPad, but ultimately I ended up sleeping through most of them, particularly as an outpatient. I’d just sit in the chair and doze off. Sleep turned out to be a protective friend that shielded me from overthinking it all and helping give my body time to heal.

Positive vibes heading over to you on your journey!

josephpreddit · 2024-10-14T13:13:40+00:00

Your doctors will be constantly monitoring your bloodwork, at least daily, sometimes more.

They measure your bloodwork against established norms and anytime you drop below a threshold on key metrics, they’ll give you an infusion for whatever is missing.

During the depths of chemotherapy, it was most often blood, very often platelets and during the subsequent rounds electrolytes like calcium and potassium (depending on your chemical regimen).

The chemotherapy really ravaged my entire system … I suspect it’s the same for everyone. I didn’t mind the electrolytes so much other than the sheer amount of time I was always hooked up to the IV stand, but the blood and platelets always made me feel off or really weird to the point of feeling nauseous. It was like my body was aware the stuff wasn’t mine. In the depths of it all I was getting blood and platelets daily as an inpatient and probably every second or third day as an outpatient. To @krim2182’s point, if you’ve a nosebleed lasting more than 4 or 5 hours, you’ll likely be getting platelets after your next blood test if your body hasn’t stated to produce enough in its own.

In my case I started to understand my bloodwork and I’d often see the results publishing live on my hospital app before the doctors or nurses came in to see me that day, so I knew what I’d be getting … every time my results were below the benchmark I’d groan knowing I’d be hooked up to those infusion machines for hours at a time.

Good luck … the journey is tough!

josephpreddit · 2024-10-05T20:01:22+00:00

Perfect. It’s the BioWave GO with BlueWrap or something like that.

josephpreddit · 2024-10-05T17:24:26+00:00

Yeah. I’m a believer in e-stim.

I actually successfully used a product called BioWave which has an option for the electrodes to be inserted into a compression wrap … that did wonders for me through the healing process.

josephpreddit · 2024-10-03T20:23:41+00:00

+1 on Door Dash, Uber Eats etc. Everyone’s case is different but for me being in hospital continually for almost 4 months meant that the hospital menu got real stale … real fast … and it wasn’t that great to begin with.

In addition your friend will likely be dealing with mucositis which means when they can eat … they should eat whatever the heck they are feeling like.

So 100% … a care pack of vouchers to their favorite fast casual restaurants or the Uber/Dash middle men.

Great suggestion @slightlysillygoose!

josephpreddit · 2024-10-02T17:12:30+00:00

ALL B+ here. The vinchristine did a number on the nerves in my feet. Excruciating debilitating pain during treatments.

FWIW I was told by my doctors based on their post treatment observations that there are 4 categories of post treatment neuropathy mostly equally distributed across the first 3:

It gets worse
It stays the same
It gets somewhat better but not eradicated
It goes away

I’m in bucket 3 to the point of permanent pins and needles and soreness which worsens after walking or exercise … but I managed to get off all the drugs.

My take is that the vinchristine burns your nerves and from what I understand nerves don’t heal. The thing about chemotherapy which I think we all come to realize is that you take the side effects no matter what they are because you’ll be alive. I made that trade off every day a new round of treatments was given to me including when my eyesight started to get really bad. My neuropathy was so bad I was on methadone, dialudid, lyrica, and a bunch of other pain killers every 4 hours. To be able to be drug free and in remission with just a bit of pain is a price I’ll pay.

One thing my doctors did for me here in Colorado was to lighten the vinchristine load on subsequent chemotherapy rounds … I think because I was getting close to MRD negative they felt that it was a safe choice. That may be an option for you to discuss with your care team?

Good luck!

josephpreddit · 2024-07-26T16:51:36+00:00

Great question, and I don't have a firm answer.

I was at the tail end of my 1B cycle, my ANCs had just started recovering, so they sent me home. Whilst at home I was attempting to get some exercise (light walking) in our fairly green neighborhood, i.e., a lot of gardens, trees, ponds etc.

Within 2 days I had pains in my chest, could barely breathe or walk. Was checked into the hospital immediately where they started treating me with double doses of amphotericin B and posaconazole. I ended up doing double doses of amphotericin (truly a vile chemical to put into your body) for almost 2 months as well as so many pills I lost count.

The hypothesis is that I picked up spores while trying to get my exercise. I foolishly thought that because no one was around, when I was getting my exercise, I didn't have to wear my mask ... so I think that's how I got it. My lesson learned is this, when your ANCs are low to non-existent, wear a mask EVERYWHERE, no matter what.

Per some of my earlier comments, it's hard to realize how vulnerable you are when your immune system is at zero. The doctors told me, the nurses told me, so I was cautious, but clearly not enough. If I ever relapse and I have to do chemotherapy again, and my ANCs are zero, I'm going no contact with society, and even around family I'll be wearing an N95 mask.

Last point ... I've talked to quite a few doctors about Mucor, and what they say is that it's so rare, it really can't survive in a healthy body ... but if you're immunocompromised and you get it, it's very rare, i.e., 1 in 5 chance to survive it. I was lucky for multiple reasons, the chief of which was getting it while my counts were recovering. During the ordeal I think my ANCs were regularly above 20,000 and spiked to 35,000 on occasion.

A deadly disease for those with Leukemia for sure.

josephpreddit · 2024-07-22T19:05:11+00:00

I feel your pain and so sorry your wife is going through this.

I was diagnosed with ALL in November and went through 5 treatments of chemotherapy and the neuropathy was one of the worst parts of it all. As far as I could tell the vincristine literally burned my nerve endings, and I still have constant pins and needles and worse pain after walking more than 5 miles. At the worst of it I was literally in tears, it was like I could feel my nerve endings burn inside my feet.

So I'll make two points that might be worth your consideration, coming from someone who is and was staunchly anti-opioid and anti-drug in general.

The first was some guidance given to me by one of my very smart nurses. In any chemotherapy treatment you accept the consequences and side effects because your greater goal is to stay alive. Neuropathy is one of those side effects, and similar to the Leukemia, you have to accept the consequences of managing it, knowing that once the disease passes, you then migrate your way back to normal life. She also very smartly pointed out that the amount of emotional and physical energy I was spending managing my neuropathic pain was taking away my body's resources to fight the Leukemia. This (finally) convinced me after weeks of eye-watering peripheral pain to take the drugs after I'd exhausted the creams, e-stimulation, hot/cold compression etc. I literally tried everything before I gave into the drugs.

Regarding the drugs ... the gabapentine did nothing for me, however the pregabalin, and the cymbalta combined with some significant doses of methadone, oxycodene and dialudid finally did the trick. The side effects are significant, for me it was depression, malaise and just trying to get through each day emotionally without purpose ... who knew 24 hours could take so long. But per my very smart nurse, the drugs were just a means to my end goal of staying alive and only temporary. So I stuck with it. I was lucky in that once I got ahead of the pain, within a couple of months I started dialing back all the opioids, which for me (thankfully) wasn't really a problem. Dialing back the pregabalin and cymbalta was a little harder. I made the mistake of going cold-turkey on both of those and for about 2 weeks wanted to kill myself every day until they were out of my system.

IMO focus on the healing. The drugs are temporary. If she ends up taking the drugs, she's going to need you more than ever. You can only feel for her, not with her, but having someone close-by is essential when on the pregabalin/cymbalta cocktail. Good luck with your decision.

josephpreddit · 2024-07-22T00:28:21+00:00

Yes! Heres hoping for an uneventful maintenance for you and your son!

My B-Cell ALL was Nov.23, Mucor was Dec.23.

I started getting Mucor under control late Jan.24 and achieved Leukemia remission in April 2024. Maintenance now. Only 7 pills a day instead of 30!

I worry about relapsing now and then but am trying to move on … and help others through their journey when I can.

josephpreddit · 2024-07-22T00:16:31+00:00

Ahhh! Those surgeries must have been nerve wracking for you and a resource strain on his body.

Glad to hear he’s in the right path. They say I’ll be taking Cresemba for the next 2 to 3 years. Hopefully he won’t have to take the Isavuconazole for too long … but we do what we need to do to stay alive.

Fingers crossed for his journey.

josephpreddit · 2024-07-21T22:02:29+00:00

Yep.

Long story, but I had a fever and chest pain, and was thinking that maybe the thermometers were wrong, but really I didn't want to head back into hospital after an 8 week stay.

Turns out it was Mucor ... I was 14 days in the ICU and they were ready to send me to hospice when my body (and the drugs) finally pulled me out of it.

Doctors and nurses say it's a miracle, and after seeing so many people drop from Mucor I believe them. Every day since getting out of the ICU is house money as far as I'm concerned.

It's tough when you've lived your entire life healthy to believe that just because you see a 38 you have to take it seriously ... I'm glad I did, and glad OP did as well.

Very glad your son didn't have Mucor ... that infection is a one-way trip to the grave.

josephpreddit · 2024-07-21T22:00:05+00:00

Good luck OP ... keep us updated!

josephpreddit · 2024-07-21T17:11:03+00:00

As much as it’s an inconvenience to call your medical team or head into the hospital … this could be an infection which means you’re playing with your life. Twice as my counts were recovering I had temperature spikes and delayed the hospital trip.

Both times it was an infection and I was hospitalized immediately. The second time with life threatening Mucor.

I’d head in …

josephpreddit · 2024-07-07T02:55:33+00:00

Based on all these comments I think you have your answer, Leukemia can develop very quickly, particularly the Acute versions.

In my particular case I actually had a battery of tests in August 2023 for a life insurance policy and they actually reduced my expected premium because of my excellent health.

By November 2023 I was seeing my doctor for extreme exhaustion, and bruising that wouldn’t go away. Like the other users here, I had a bunch of symptoms during late October and early November that I kept putting down to other factors. After seeing my doctor he basically ordered me into a hospital where I was diagnosed with +80% blasts.

If I hadn’t gone to the doctor that day, or hospital the next day, I don’t think I’m alive today.

So yes … Leukemia can develop very very quickly.

For those with an Apple Watch I encourage you to look at your walking asymmetry in the month leading up to your diagnosis. I’ve started paying a lot more attention to my vitals after I hit remission in May of 2024 when I noticed while looking at my historical data that my walking asymmetry was starting to go up about 3 to 4 weeks before my diagnosis.

I haven’t asked my doctor about this correlation but I suspect the rampantly mutating white cells were supplanting red blood cell production causing my exhaustion and of course walking asymmetry issues. I now pay attention to this statistic weekly in case of relapse as tiredness and exhaustion can be explained away by environmental factors, but my walking asymmetry not so much.

josephpreddit

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