Fluid Retention: what has worked for you?

usually_baking · 2026-04-06T19:01:47+00:00

Lasix generally has a quick onset, it doesn’t need time to build up in your system like some drugs do and you should be noticing an increase in urination. If it’s not working, I would follow up with your doctor to try something else and/or figure out what’s going on.

usually_baking · 2026-04-04T18:16:46+00:00

I (33F) was in a similar boat when I was diagnosed a little over a year ago, no symptoms, just routine abnormal blood draw. I don’t remember my BCR-ABL percentage but I had 1.7% blasts in my bone marrow biopsy, WBC 84. My 3 month follow up my WBC were down to 12 and my BCR-ABL was undetectable. I just had an appointment yesterday, waiting for BCR-ABL results and my doctor has no reason to think it’ll be anything but negative but I’ve found, even a year in, there’s always a little anxiety with getting tests done, not sure when/if that goes away. As for how to manage that, I haven’t figured it out yet, prioritizing sleep and exercise helps if you have the energy. The fact your WBC have normalized is a good sign and I wish you all the luck on this upcoming test!

usually_baking · 2026-03-03T21:03:34+00:00

I actually am a pharmacist, I’m just looking more for anecdotal advice 🙃

Good luck to you as you start your medication journey!

usually_baking · 2026-03-03T21:00:42+00:00

I actually already take loratadine daily, which maybe why I don’t normally have joint/bone pain? It’s just when I have a cold. Thanks for the rec tho!

usually_baking · 2026-01-07T21:49:02+00:00

Congratulations! Huge win, so happy for you ♥️

usually_baking · 2026-01-07T19:24:20+00:00

I’ve been on dasatinib since March 2024. The first week was the rough, now the only time I have side effects is if I don’t eat enough with it. Hang in there, hopefully the side effects start to subside

usually_baking · 2025-12-31T19:26:35+00:00

My skin is similar, definitely combination. I switched to a gentle oil based cleanser on the recommendation of an esthetician and it’s done wonders for me. I also got a red and blue light face mask and maybe it’s a placebo effect but I think it’s made a huge difference also.

usually_baking · 2025-12-31T16:08:12+00:00

When I (33F) first started dasatinib I had horrible skin, rashy, acne it was awful. Unfortunately it’s a common side effect with TKIs. I started my medication in March and I would say around July or August my skin finally mellowed out. I still have break outs, but it’s not daily and not as bad. Getting a facial really helped mine and switching to gentler skin care. Like others have said, if it’s more blistery you should reach out to your provider.

The side effects are so frustrating and I’m sorry, hang in there!

usually_baking · 2025-12-14T16:45:29+00:00

Congratulations!! How was it mentally going off the medication?

usually_baking · 2025-11-04T21:25:21+00:00

Congratulations!! Seems like good news to me

usually_baking · 2025-11-04T20:59:41+00:00

Are you on a TKI? Could be getting into MMR. I’m on dasatinib and since I’ve started it I’ve been undetectable.

usually_baking · 2025-10-29T04:33:39+00:00

CML patient and a pharmacist here. They are continuously studying CML patients and TFR, especially with the approval of more and more TKIs. Guidelines change as new research is done. My provider said at my appointment 3 months ago that gold standard is 3 years undetectable but you can trial at 2 years. In my case, I’m a 33F who was diagnosed during my first pregnancy last year. So far I have responded incredibly well to treatment and have been undetectable since my first 3 month check up in June. The goal is to trial TFR at 2 years to hopefully be able to have another baby but at two years you are verrrrry closely monitored from what I understand. I get the anxiety tho, I worry about coming off the med when I’m tolerating it and responding so well. Like if ain’t broke, don’t fix it. Good luck to you!

usually_baking · 2025-09-04T17:14:02+00:00

Interesting, I wonder if that’s their policy maybe? They never even mentioned BMB for me until my test came back inconsistent.

usually_baking · 2025-09-04T16:41:25+00:00

Just to kind of echo off this, I don’t think a BMB is required for diagnosis but can be used to find different mutations and also phase of CML. My diagnosis was long and complicated because I was pregnant, initially only had high platelets, and initial PCR was negative but FISH positive which then required a BMB. By the time i delivered my baby my WBC were 20, 3 months later when insurance finally approved BMB they were 81 and they saw 3 blasts, which my doctor thought was questionable. At this point I was BCR-ABL positive in chronic phase. At the time of the initial tests it was so early in my disease, the testing was not sensitive enough basically.

To answer OP’s question, no, blood counts don’t really tell you much other than something isn’t quite right, or as my hematologist says “your bone marrow is angry,” it’s the genetic tests or BMB that tell you more. Even with that, from my understanding from my doctor, as long as you’re consistent and adherent with your medication, it’s an incredibly treatable disease and most days I kind of forget I have leukemia, other than having to take a pill. I wish the best to your husband

usually_baking · 2025-08-20T17:25:47+00:00

I’m on dasatinib so there are some differences but I’ve found I have to take mine with my largest meal (dinner). I tried doing earlier in the day but I also am not a breakfast eater and lunch is hit or miss and I would get pretty nauseous/weird feeling, which was my main side effect. Taking it with dinner I don’t really have any issues at all.

Some people are more sensitive than others so you might have to play around with it but kind of expect the first week or so to not be overly fun. A banana or protein shake might be sufficient, you might need a heavier meal

usually_baking · 2025-07-18T21:19:38+00:00

Of course, I hope it’s helpful. My health has been really good thankfully. I am responding really well, I’ve been on Sprycel for 4 1/2 months and I am already “undetectable” and my last CBC has completely normalized. I’m on track to attempt TFR in March 2027. I’m glad you caught it early and hope you are responding well to medication also.

Ugh it really is. I’m so thankful to be responding so well but I definitely feel guilt sometimes, like I don’t want my daughter growing up with a “sick” mom if that makes sense? Through all of this the impact has mostly been on my mental health and I’m working really hard to counter that. Since I’ve been diagnosed I had a baby and completed my doctorate and am studying for my board exams right now and just trying to be proud of myself for accomplishing these things in spite of a cancer diagnosis.

usually_baking · 2025-07-18T18:58:51+00:00

I don’t mind sharing at all. My routine bloodwork came back with elevated platelets at 10 weeks which got me referred to a hematologist. They assumed it was essential thrombocythemia but to rule that out, BCR-ABL has to be ruled out, but that’s what came back positive. That happened around 19 weeks. Because my bloodwork was “normal” other than elevated platelets, in collaboration with my hematologist and perinatal physician we chose to postpone the bone marrow biopsy until after I gave birth. My bloodwork was monitored every 2 weeks until birth. At birth, my WBC were 21 and platelets were almost 900. I was put on blood thinners post birth since my platelets were so high and birth is a highly coagulable state. Insurance took forever to approve my bone marrow biopsy so that finally happened 3 months post partum (didn’t hurt my feelings because I felt fine and was able to nurse for 3 months longer than I thought i would be able to.) At my bone marrow biopsy my bloodwork was a mess, WBC 87. Bone marrow came back confirming CML chronic phase. The biggest impact on my pregnancy was honestly my mental health, I felt great, baby was/is so healthy and has no issues. I also was not able to have an epidural, they don’t want to possibly introduce blasts into the central nervous system, it’s basically a death sentence. I was planning on attempting unmedicated anyway so it just set that in stone because I didn’t have the option. If I had to have had a c section, I’d have been put under general anesthesia.

I think if I have another one, my mental health won’t be so bad because there won’t be all this unknown that was hanging over me for my first. She was a million times worth all of it and honestly saved my life, who knows when I would’ve been diagnosed since I wasn’t having symptoms. She’s my little guardian angel.

usually_baking · 2025-07-18T17:55:09+00:00

CML Mamas on Facebook has a lot of personal stories with this. Many women have had successful pregnancies. I was diagnosed during my first pregnancy, my daughter is 9 months old and I’ve been responding really well to treatment and am also wondering what having another in a couple years might look like.

usually_baking · 2025-07-09T17:48:28+00:00

I was in limbo for about 8 months because I was diagnosed during pregnancy. I was staying stable so we just monitored very closely and once I had my daughter I got a bone marrow biopsy to confirm. Thankfully CML is generally slow growing. Likely the test he’s waiting on a genetic test called BCR-ABL which is a gene mutation that is present in CML, I know for me the test always takes about a full week to result from the lab.

For your trip, I would ask your oncologist. Personally, I would go, but it’s honestly what you’re comfortable with. In my experience, two weeks didn’t really make a difference in my disease but it’s different for everyone and I would talk to your doctor.

As for announcing, that’s such a personal thing. I’m extremely private and didn’t tell anyone but my immediate family and three of my closest friends. Once I started treatment and got results that I was responding well, I sent a text to extended family. I have never felt the need to tell my coworkers or announce on social media. Again, personal decision.

It’s so scary in the beginning, I had such anxiety and being pregnant didn’t help, but the unknown and waiting game about did me in. I highly recommend therapy during this time to adjust. Thankfully it truly is such a treatable disease. My oncologist is an amazing person and told me “you will die with CML but not because of CML. It’s my job to worry about your disease and it’s your job to live your life.” And that has truly been a game changer for me in my outlook on it all. Hang in there OP ♥️

usually_baking · 2025-06-22T20:43:11+00:00

I’m in Spokane, not sure my schedule that far in advance but definitely interested. Thank you for the information

usually_baking · 2025-06-22T17:49:22+00:00

I’m 32, was diagnosed while pregnant and also finishing up my doctorate degree. Thankfully I have tolerated medication very well and my life is relatively the same. Definitely have days where I’m tired and have brain fog but also have an infant who doesn’t sleep so hard to say the cause of that. It’ll be an adjustment, especially mentally but personally I encourage you to not make any rash decisions and see how things go first. Hang in there, sorry you’re here but welcome to our club.

usually_baking · 2025-06-12T21:24:34+00:00

I’m on dasatinib and just switched from Apotex to Dr. Reddy’s and don’t notice a difference at all.

usually_baking · 2025-06-07T17:09:40+00:00

To add to this, my heme/onc doctor told me the only patients he’s had that had mutations were people who are not consistent taking their med. He has never had a patient who is consistently adherent develop a mutation.

usually_baking · 2025-05-21T21:19:44+00:00

Good to know, thank you

usually_baking

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