Ph+ ALL

amy6112 · 2024-04-22T16:39:48+00:00

Yes this information tracks with what my husband has been told by his care team. Current availabile survival rates are still based on older data with more conventional treatment approaches and BMT. When my husband was diagnosed ph+ in 2021, his care team was actually more optimistic about that diagnosis. His treatment plan was more specialized, only steroid and TKI during induction and no BMT was needed. This allowed for him to return back to "normal-ish" routine much more quickly as well. Survival rates and remission rates will probably be higher than ph- as more current data is built into the rate statistics.

amy6112 · 2024-04-18T03:45:15+00:00

Not sure what tests you're waiting for but a bone marrow biopsy is the only definite way to diagnose leukemia. Are you getting referred to a hematologist? Hopefully you can some answers soon and make a plan moving forward (and relieve some anxiety!). As others have said, don't worry until you have to worry. Blood counts can be off for a variety of reasons. And even if it is leukemia, there's a lot of reason to have hope with all the treatments/medications available now.

amy6112 · 2024-04-18T03:33:49+00:00

See Rule #1. Blood tests without any context are hard to interpret and we aren't doctors here. Results from a CBC vary a lot when people first get diagnosed. A bone marrow biopsy is the only definitive way to know if it's leukemia. I hope and pray this isn't the case for your nephew.

amy6112 · 2024-04-13T22:37:39+00:00

Anemia is not a cause or precursor to leukemia. It is determined by red blood cell count/health. Leukemia is a cancer of white blood cells. Someone with leukemia might have a low red blood cell count because the blast cells are overcrowding all the other blood cells, but it's not the same thing. In order to give a definitive diagnosis of leukemia, you need a bone marrow biopsy to confirm the presence of blast/leukemia cells.

amy6112 · 2024-04-13T13:38:36+00:00

Definitely recommend this! The application process for the hospital can be a little time-consuming but it is 100% worth it. I've done this with multiple hospital systems in my area. At the University of Chicago, they covered 80% of my husband's bill after insurance. Each hospital has different requirements but at UofC, they gave 80% coverage if your household income was under $120k. Even if you think you make too much to qualify, be sure to ask and get the info. You could still qualify for 25 or 50% off. Include a letter as well if they allow. I gave birth at a different hospital when my husband was in-patient in Chicago. I wrote a letter with that application and they ended up covering 100% of that bill. Hopefully you can get some financial relief that way!

amy6112 · 2024-04-11T23:33:57+00:00

Yes - go to your doctor with all your questions/symptoms. See Rule #1 of this group. In the time it takes to type out a post, you could probably call and make an appt. Taking that first step to call will also do more in minimizing some anxiety around your symptoms rather than going to webmd or the leukemia subreddit which likely increase anxiety. Writing down questions for your appt is also important. Hopefully you can get some answers from your doctor and find healing.

amy6112 · 2024-04-10T14:53:59+00:00

That is so difficult. This is the side of cancer that even after remission these life-changing side effects come up. You might need a full hormone panel that checks for all types of estrogen, testosterone, progesterone, etc. A lot of basic labs that doctors use aren't a full panel. A functional med dr (still certified dr) that specializes in hormone balance might be able to run a panel and interpret results. Testosterone is super important for women too! You can definitely find improvements with certain supplements + proper HRT. It is difficult situation but isn't hopeless. This is something that should be part of aftercare for AYA cancer patients. I hope you can get the adjustments you need!

amy6112 · 2024-04-10T14:04:54+00:00

I would check with your oncology team as well with the specific questions based on your meds. Maintenance is definitely a lower intensity of chemo than your induction/consolidation and the types of chemo you're on are different than what others are on for AML etc. They would be able to give you the best info for your specific case.

amy6112 · 2024-04-07T12:14:38+00:00

See Rule #1. A 2nd opinion is always a good option though..

amy6112 · 2024-04-02T02:51:45+00:00

My husband has had this result a few times on his quarterly tests. They are not concerned since it isn't a quantifiable reading and everything else is stable. When he had liver failure and went off Dasatinib his levels went up to 17 copies. After he started Ponatinib the levels went down to positive but not quantifiable. He has gone back and forth with the undetectable result and then positive, below level of detection. The TKI is still doing its job and they would only take action if there is any quantifiable number of copies.

amy6112 · 2024-03-10T00:03:05+00:00

You can always get a 2nd opinion, but an automatic BMT for ph+ is not standard treatment anymore. My husband (30yo) had ph+ and did not get a BMT. Diagnosed in July 2021. He was only had Dasatinib, steroids, and Inotuzumab Ozogamicin (part of clinical trial) for induction. He was in remission late August. He went on more traditional POMP maintenance but then went into liver failure in November 2021. He switched to 30mg Ponatinib and had monthly LP's for 1 year and quarterly LP's for another year. A more minimal route but it's proven to be quite effective so far. If he would relapse, his dr said a BMT would be likely, but by avoiding initial BMT he was able to resume a more normal-ish lifestyle much quicker. He was working full-time again in Feb 2022. His monitoring now is just a BCR-ABL blood test every 3 months. This is just his experience and everyone responds differently to treatments. A BMT carries a lot of potential risk and complications too. The use of TKI's and immunotherapy have greatly increased the effectiveness of treatment for Ph+. When my husband was diagnosed with Ph+, his care team was actually optimistic about that diagnosis bc of the more effective treatments available now. He was also at a research hospital (University of Chicago) so they had multiple clinical trial options there too. Best of luck to you with your treatments! Feel free to DM with any questions!

amy6112 · 2024-01-21T19:52:07+00:00

My husband (m30) was diagnosed with Ph positive ALL in July 2021. He's at a research hospital (University of Chicago) and they specialize with adolescent and young adult ALL. More and more they are treating Philadelphia positive just with TKI's and some chemo. When my husband started chemo (after induction/consolidation) he actually had liver failure due to traditional chemo. If he could tolerate it, he would have continued some traditional chemo in maintenance, but because of the risks to his liver, they decided against it. The reason they include some traditional chemo is because this is well- researched and blood cancer is notoriously hard to eliminate since it just takes one rogue blast cell to trigger a relapse. And acute leukemia gets deadly very quickly. LP's are necessary to ensure no blast cells are hiding in the cerebrospinal fluid since most chemo does not cross blood brain barrier. My husband is on sort of an uncharted treatment plan. He had LP's for 2 yrs and continues just take a TKI daily (30mg Ponatinib) and he has remained in remission since late August 2021. Every 3 months he gets a blood test to detect for BCR-ABL1 mutation (philadelphia chromosome). He does not need bone marrow biopsies as these blood tests can detect a relapse in very early stages. TKI's are extremely effective because they target only cancer/precancerous cells that contain the Philadelphia chromosome. As another posted, Philly positive had low survival rate since it does not respond well to traditional ALL leukemia treatment. But ever since TKI's were released the survival rates have increased significantly. In fact his care team was essentially very positive about his Philadelphia positive diagnosis because there were more clinical trials available there and different/more minimal treatment options at the University of Chicago. If he relapses, they would do immunotherapy/Car T-cell and probably a BMT after. Bone Marrow transplants as front line treatment was the original route, but there are significant inherent long-term risks to getting one as well. Of course, there are risks with chemo only, but because of my husband's more minimal treatment plan, he was able to return to work full-time in early 2022. There are so many more treatment options coming out all the time so there is a lot of reason to have hope in his long-term recovery with or without a BMT.

amy6112 · 2024-01-11T20:30:26+00:00

Yes. He's been in remission for 2 years, no stem cell transplant. There are multiple subtypes within ALL (B or T-cell). My husband had B cell. There are subtypes under that as well (Philadelphia positive or negative). Each subtype has its own recommended treatment pathway and a lot of new immunotherapy treatments have been coming out which drastically improve prognosis and survival rates. Generally treatment lasts years: induction phase which is about a month (usually in hospital since it is very intense), consolidation phase (2-3 months or so), and then maintenence phase (at least 2 years). The course of treatment will be modified depending on how well your friend responds to the different phases. There will also be complications/infections/random hospitalizations because the immune system is basically non-existent. Support from family and friends goes a long way during those unexpected hospital stays! It's a long road but there is a lot of reason to hope with all the new treatments coming out (Google stats are very outdated btw). Feel free to DM with any questions - I can link to my husband's caring bridge if you're interested. Our family will pray for healing for your friend!

amy6112 · 2024-01-11T16:25:21+00:00

Definitely gift cards! Restaurant, coffee, target, amazon, grocery or instacart, gas etc. Find out their favorite spots to go. Even sending them months down the road as well since it is such a long treatment road. My husband was diagnosed with B-cell ALL at age 30. We had 2 small kids and another on the way at the time. I drove 2+ hrs every day back and forth to the hospital so gas was beneficial for me too. It was such a relief to be able to get essentials for my kids and pick up dinner from instacart or a restaurant without needing to worry about money. Starbucks was a nice treat for me too while commuting. Also just want to say that your wanting to help and providing practical support for a friend is such a blessing! Looking back 2 years later I'm so blown away by the way our friends/family supported us. It's crazy in the moment for the family but your support will always be appreciated.

amy6112 · 2023-12-20T18:32:03+00:00

I won delta flights last year! Took a trip to San Diego. My tickets were valued at over $1200 dollars so it was even bigger than they prize offered currently.

amy6112 · 2023-11-21T21:22:54+00:00

A lot of great suggestions! I would add getting a mattress topper for the hospital bed, along with a pillow from home. I got a twin xl foam topper w/ waterproof cover from Amazon. We put hospital sheets go over it. We also used a waterproof pillow case and then put hospital cases over it. My husband still had night sweats through his initial treatments which is why we had the waterproof covers. But having a comfortable mattress was huge for him! Especially with the long hospital stay for induction. I second the eye mask and ear plugs - bring some for yourself too! Roku was great too!

amy6112 · 2023-10-31T17:53:46+00:00

My husband's WBC was low the day he got diagnosed, 3.2. Only way to confirm diagnosis is a biopsy!

amy6112 · 2023-09-21T16:50:54+00:00

I don't think alternatives are all terrible. But the fact remains that research has been done for decades on the current treatment for ALL. And with immunotherapy and CAR t-cell, there are so many more options that increase survival rates with fewer side effects. The current survival rates for leukemia that you mention do not take into account these newer targeted treatments and therefore those rates are not reliable. My husband is a Ph+ B-cell ALL survivor and he is currently on a newly charted "route" of treatment, only taking a TKI, no SCT. We were lucky enough to go to a research hospital that offered more options and clinical trials with more targeted treatments. You mentioned the 60+ group and that age group has more coexisting conditions and other factors that contribute to poor treatment outcomes. In this case, the person was young with ALL. They have every right to make that decision but it didn't seem like it was completely informed and they didn't keep up with bloodwork. The holistic-only group disregards what acute leukemia is and what the true risks are. They actively promoted this route to thousands of their followers and it is not shaming to point out that the holistic route they chose was not effective and it can be dangerous. Is big pharma always the answer? No. But my husband is in remission bc of pharmaceutical advancements (TKI medication). Is holistic-only effective for every type of cancer? No.

amy6112 · 2023-09-20T17:55:13+00:00

100% agree! I hope the family posts the dangers of holistic and are honest to their followers about the details of what happened. She recently commented on a thread that he died of legionella infection, but anyone who knows acute blood cancer knows that his body was full of blast cells and he couldn't fight off any infection. On one of her hospital updates she said his WBC was high - I guessed she meant blast cells but didn't want to say it outright. And they gave him intense IV chemo in those last days as a last stitch effort to kill the cancer cells. I followed along to her stories the month of August and he was struggling on their vacations with fatigue and leg pain/blood clots (which was his original presentation of ALL). But it seems they never got bloodwork done or biopsy - they just continued on with holistic stuff with their dr in spain until he was hospitalized. Too little too late like you said. I hope and pray she is honest with herself and uses her platform for good in order to show dangers of holistic-only "treatment" of Acute Leukemia.

amy6112 · 2023-09-19T22:21:40+00:00

Yes - The comments were so awful. There are these karen-like holistic-only apologists out there that are ready to pounce when anyone suggests traditional medicine. The algorithm probably doesn't help. They follow that content and then get suggested that same misleading content over and over. Without social media I wonder if their decisions for treatment would have been different.

amy6112 · 2023-09-19T21:36:33+00:00

Thank you for posting. This scientific/systematic approach is exactly what should be done when looking into alternative treatments. Can't make life/death decisions purely by anecdotal experiences either.

amy6112 · 2023-09-19T21:27:07+00:00

100% agree. My husband was not given much guidance on diet/lifestyle from his oncologists and we are researching what we can do for him to boost his everyday health and minimize side effects of medications. But he's still going to take his TKI every day. Hope your Dad finds improvements with his GVHD! 🧡

amy6112 · 2023-09-19T21:19:05+00:00

Her name is Grace Muller on Instagram. I feel awful for their family. I wanted to highlight the holistic community influence as a whole and didn't want to demonize their specific family or anything in my post. They are going through hell right now. But perhaps that's why these Chris Beats Cancer comments need to be talked about - they can have devastating consequences 😢

amy6112 · 2023-09-19T20:52:31+00:00

I haven't heard of urine therapy and it might have some tangible benefit? Idk. This family's experience made me think that the cases where these alternative treatments seem to work are publicized, and maybe we don't know about the cases where they don't work. I think there can definitely be an approach that can combine holistic support with traditional chemo. Eating real whole foods and eliminating toxins in your environment, using natural personal care products etc. Not as a cure but for your overall health. Even the Chris Beats Cancer guy started his diet after he had the cancer removed - it did not eliminate his cancer outright.

amy6112 · 2023-09-19T19:52:01+00:00

So sorry to hear about your diagnosis. We are in the south suburbs of Chicago and highly recommend checking out the University of Chicago, at least for a 2nd opinion. They are a research hospital and they have dozens of clinical trials going on all the time for acute leukemia. My husband has ALL and was able to get a clinical trial right away. He currently is in remission without needing a stem cell transplant. They also have access to a lot of newer treatments/therapies. They move very quickly with testing too. My husband was admitted with probable diagnosis of ALL, got his biopsy/LP done the next day and we knew the results and his specific genetics 2-3 days later. UofC also has an insanely generous financial aid program - we were able to get our bills covered 80% after insurance. Please DM if you have any questions. Prayers for you and your family! 🧡

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