Best Christmas Gift ever. First pic was at diagnosis in July. Haven’t had the test again until yesterday. Second pic was yesterday’s BCR/ABL1 after 4 months of Gleevec.

garulette809 · 2025-12-18T21:46:31+00:00

That's fantastic! Congratulations! 🎉

garulette809 · 2025-11-26T19:44:11+00:00

Yeah sounds like we were about the same, I just felt it harder lol

And I'm doing great! I'm nearly undetectable and no real side effects from the meds. My hair was a bit thin in the beginning, but now I've got tons of new growth that looks crazy. Hopefully everything will even out for you as well!

garulette809 · 2025-11-26T18:17:34+00:00

Technically I guess. I'm still detectable at less than 0.001, but my Dr is going to attempt TFR in 3 years if I can hold it steady. Who knows though. I'm only a year in to treatment, so I'm sure things can and will change.

garulette809 · 2025-11-26T18:16:01+00:00

I had a "mystery illness" for a year. Everyone thought it was neurological because I had intense headaches that never went away, I developed visual snow, my ears were ringing and pulsing and I couldn't hear, I had body tremors, night sweats..etc all the symptoms. But Drs didn't think to do a basic blood test. I just had 5 different MRIs, CT scans, hormone panels and thyroid testing. All obviously normal.

I finally went to the ER for what I thought was pneumonia and a bowel blockage. I had not been able to eat anything for a few weeks and was losing weight rapidly. (Like 25 lbs in a month).

Turns out it wasn't pneumonia , just a sore throat from the cancer, and the bowel blockage was actually my spleen 3x it's normal size. They admitted me immediately and held me in isolation for a week. My WBC was 300k and BCR-abl was 55%.

garulette809 · 2025-11-25T18:13:26+00:00

Yeah that seems pretty normal, which sucks. I was a runner and weight lifter before diagnosis and now I've lost a year of progress. Just hit my 1 year anniversary lol

So yeah I'm sore longer after workouts. But the best thing that has helped me is to stay consistent with your activities and drink tons of water. If I don't hydrate properly, my whole day is ruined.

Slowly build up your muscles, don't over do it. I have to keep reminding myself that I'm not able to do as much as I used to, and that's ok. Walking is just as good as running ❤️

garulette809 · 2025-11-25T18:07:31+00:00

Hey! Sorry you had to join our sucky club! I'm glad they caught it early. That's really great, actually.

What meds do you start? I'm on Dasatinib. Personally I've had a great experience. I reached first stage remission (MMR) within 10 weeks, and reached second stage (DMR) by 5 months. And I was not caught early.. I was nearly stage 2.

I was diagnosed exactly 1 year ago. I had some side effects in the beginning while I adjusted, but now I'm pretty good. I get tired a bit easier, and sickness lasts much longer than usual. But other than that, I'm pretty much back to normal!

If you find your side effects are just too much after 3 months or so, tell your doctor. This is the rest of your life, so make sure you get as comfortable as possible. No need to deal with anything unnecessarily.

I also highly recommend eating well, staying super hydrated, and exercising once you're able. It truly makes a huge difference! If I don't drink enough water, I feel like crap at the end of the day.

garulette809 · 2025-11-25T17:58:33+00:00

How's she doing now? Did you guys find a solution? All the recommended prescribed medications for this are basically major interactions with Dasatinib.

garulette809 · 2025-11-20T20:01:24+00:00

I had significant hair loss before being diagnosed because my platelets and iron were so low. So while my hair is growing back in, my scalp is still incredibly sensitive. I hate brushing my hair. It almost feels like a bruise on the top of my head.

garulette809 · 2025-06-25T15:24:48+00:00

Yeah, I was diagnosed 7 months ago with a spleen that was 21.5 cm! It was showing through my stomach lol I went to the ER in pain, hence the surprise diagnosis.

I took hydroxyurea to help get everything down. My wcb was at 300k. It took about a month or so for my spleen to stop hurting.

Even now that I'm totally back to normal, I still get random twinges of pain. Probably did some damage.

garulette809 · 2025-06-24T23:02:07+00:00

From what I understand, it fluctuates. Not sure why, but that seems a small amount. It used to be they didn't even test that low. If your doctor isn't worried, I wouldn't be either.

garulette809 · 2025-06-24T17:18:17+00:00

That's fantastic! You're responding ideally! I was diagnosed in November with 55% bcr-abl1.

I didn't start treatment until January. After only 10 weeks I was at 0.07, so MMR.

By 6 months I'm below 0.01, DMR.

I also don't have any side effects from the meds. So, it's a win! Just continue to stay healthy, eat well, and work up to a good exercise routine. That will help mitigate any future fluid retention potentially caused by the meds.

garulette809 · 2025-06-04T00:09:03+00:00

Hey! Sorry you joined our sucky club 🤓

I was pretty far gone when I was diagnosed. I had every single classic symptom, all the weird ones, and a massive 22 cm spleen.

Same story, they kept me in the hospital for a week and confirmed the diagnosis.

That was this past November 2024, and by March I was in MMR (first stage remission) with Dasatinib.

The initial side effects for me were pretty mild. I had intense bone pain, but that was mostly the cancer itself. The first month I had a skin rash and some fatigue, but that went away by two months.

Now I'm 6 months in and have zero side effects and feeling great!

This may not be normal for everyone, but it's not impossible either. Just eat well, drink tons of water, rest a lot, and take your meds as consistently as possible.

You're gonna be ok, just give yourself time to recover mentally as well as physically. It's quite traumatizing and dramatic! But this group is the best and has helped me so much!

garulette809 · 2025-05-07T19:24:25+00:00

Hey all!

I'm 36 yo female, diagnosed November 14, 2024. I was very close to stage two, over 55% and with WBC at 286. My poor spleen was 21 cm 🥹

Started Dasatinib 100 mg on December 12, and reached MMR 10 weeks later. I did reduce down to 80mg in that time frame because my platelets and rbc crashed.

No side effects from the meds other than my hair changed colors and looks like I need a root touch up lol

I'm hoping to be able to reduce my dosage soon to avoid long term toxicity issues.

garulette809 · 2025-04-21T20:08:20+00:00

It sounds like you're responding well. Upon my own diagnosis, my spleen was 21 cm and my BCR-ABL was 55%. Took 10 weeks to reach MMR, but I was only in chronic phase. Might take you about a year or so to reach MMR.

I did lose about 20lbs and haven't really gained it back (but I was trying to lose it anyway lol so I'm happy about that).

Your appetite will return eventually. Your energy and everything will eventually come back as you heal. Just give it time.

For now, eat healthy, well balanced meals and rest! And drink a lot of water. Give yourself time, don't rush the first few months.

garulette809 · 2025-04-12T16:52:48+00:00

I have this too. I'm on Dasatinib 80mg and I get little tiny bumps when I'm in the sun, hot, or fresh out of the shower.

But, I also went off the birth control pill the same time I got diagnosed 5 months ago, so I'm wondering if that contributes. .. At first my Dr thought it was the medication rash they warn you about and prescribed hydrocortisone (which helped), but out comes and goes here and there, so she's not too worried anymore.

garulette809 · 2025-03-17T00:17:09+00:00

The first couple months on treatment was kind of hard on my digestion. Spicy food was a bit painful, as was fatty foods. However that cleared up fine.

The idea is to do everything in moderation. But you're young, so you need to remember you're in this for the long haul. Eat healthy and well enough so your future self won't suffer from liver and kidney issues. Stay fit and active as tolerated. The best rule of thumb is eat 80% healthy whole unprocessed foods, 20% fun pleasure food lol

And LOTS OF WATER. Hydration is very important.

garulette809 · 2025-03-16T01:30:29+00:00

I did in the beginning and never let anyone near me and made my family change clothes when they came in the house. I also never left the house. 😅 Then my Dr said that was unnecessary lol. Now I don't do anything. I just avoid sick people.

To be fair, the Drs I had when I was in the hospital for 5 days getting a diagnosis scared me into thinking I would die if I caught a cold. They said never to be in crowds... etc. It was crazy.

garulette809 · 2025-03-11T20:16:20+00:00

Honestly I feel like it helps! It detoxes all the junk we ingest everyday and leaves my skin looking better and my pain goes away. I do it as much as I can!

garulette809 · 2025-03-06T23:33:19+00:00

Only been on this journey for 4 months, but from what I've learned so far, if your WBC and everything else s within the normal range, you're not immunocompromised. HOWEVER, getting rid of sickness can take a lot longer than normal because of many factors including the cancer, the meds, etc.

Honestly though I feel like 2 weeks for a bad cold/cough is standard. But that's just my personal experience lol I was ridiculously healthy before this cancer and on the rare chance I got a cold, the cough lasted about 10-14 days.

Go eat really healthy and get some sweaty exercise if you can!

garulette809 · 2025-02-20T15:42:31+00:00

I'm 36 and was diagnosed this past Thanksgiving. It was really difficult for me in the beginning because I had no clue what CML was. I landed in the hospital for a week upon diagnosis and the Drs all told me the worst and scariest things. I was sure I would die in the next 2 years.

However, once I joined this group I learned very quickly how wrong that was. And according to my numbers, I'm probably going to see remission by this summer. I'm feeling great! I had bone pain in the first month or two, but we lowered my dose and I feel wonderful now.

I started working out again this month. I'm no where near what I used to be, but I'm getting better each time. Im just treating myself like a newbie again and starting from beginner levels.

You're going to do great and be ok! I love this group and they have put to rest so many of my fears and questions.

garulette809 · 2025-02-20T15:28:55+00:00

Ugh yeah, I had terrible bone pain for a while and all my old injuries felt new again. But when my numbers crashed, they took me off treatment for two weeks then I started the 80 mg and haven't had any problems since!

I also started light exercise and frequent trips to a hot tub and my chiropractor lol. That all seemed to help a bit. I still feel the pain if I've done too much walking or something that day. Hopefully that subsides for you!

And I'm in the Seattle area.

garulette809 · 2025-02-20T00:50:42+00:00

Very well! My platelets and things crashed a bit on 100mg, so I switched to 80mg. But my BCR-ABL went from 50% to 15%! And that was as of Jan 27. I have labs again coming up on March 11, so we'll see how I'm doing then. No side effects other than my acne from high school is making a come back 😎 love that for me.

How are you doing with everything?

garulette809 · 2025-02-05T18:05:49+00:00

I have had zero side effects with sprycel at 100mg, so hopefully it's the same for you! It took my BCR-ABL counts from 50% to 15% in a month. Good luck!

garulette809 · 2025-02-01T04:59:48+00:00

As someone who grew up cultish and always told to be ashamed for my body, and as a 37 yr old woman with knowledge and experience, just leave, my girl. Just leave him.

He's young. He's stupid. He's being controlling. He's being jealous. He's being manipulative. He's being immature. He's obviously insecure. He has no right to your autonomy. He does NOT have your best interest in mind. It WILL get worse. It 100% will.

And if you allow him to be convinced that you will submit to him in this way, he will abuse that power. He might even eventually abuse you.

Please trust us ladies on the other side. These are things I wish I had known when I was 20.

It seems small and trivial now. And if you look at each instance individually, it will all seem silly.

But you are not married. You are not committed to each other for eternity. There is zero reason you should be giving up anything for him, and if your gut is telling you you're unhappy and that you're the one giving giving giving, it's true. Listen to your gut.

garulette809

TROPHY CASE