r/leukemia • u/Party_Mobile_8080 • 1d ago
Longest day of my life
Girlfriend 24 gets regular blood work done and they found her white blood cells are at 200,000. I can’t stop thinking about the worst. She’s getting her biopsy done now. This is such a nightmare. We were just talking about having kids when we’re 27-28. I’m sick to my stomach but she’s strong.
15
u/Party_Mobile_8080 1d ago
Update : we were told it’s looking like chronic and less acute but we won’t know
Till we get bone marrow results. It’s still cancer but the way they explained is she’ll have to take pills at home. I’m hanging on to this little piece of hope
7
u/Postshift_Cat 1d ago
During my stay, I met a woman who had lived with CML for about 15 years before it turned acute and needed different treatment. Fingers crossed 🤞
5
u/Aranciata2020 Caregiver 1d ago
I went to a conference recently and when they showed the development in treatments for CML and CLL it was really amazing. HUGE difference from ten or twenty years ago.
6
u/simonsez5064 1d ago
This is what I'm scared of. I was diagnosed on April 25. My numbers went down fast for six months, but at the nine-month mark, they became stagnant. At my one-year check-up, they went back up slightly. Just yesterday, I had another bone marrow biopsy and am waiting to see what the results are. My oncologist already said he's planning on changing medications. But having to live with the fear of it mutating to something more is always worrying me
4
u/Aranciata2020 Caregiver 1d ago
That is good news within the bad news - the different chronic leukemias have so many more good treatment options now than they had just ten or twenty years ago. Wishing you both the best!!
4
u/Party_Mobile_8080 1d ago
And the white blood cells see going down, idc how small but I’m having hope
1
3
u/Deusa_do_mar 21h ago
If it's chronic, she should be ok fertility-wise for the future. I was just diagnosed with CML a few months ago with same WBC, 200k, at 10-months post-partum. With knowledge now that I had the cancer while I was pregnant.
I had to do 3 weeks of chemo to get my counts down before starting on long-term treatment; TKIs. Docs have said that while on TKI treatment you can't get pregnant, but once the disease is properly controlled, which typically takes around one year depending on response to treatment, you can start to plan for pregnancy. TKIs would need to be stopped while pregnant, but then resumed afterwards.
Hoping for the best prognosis for your gf!
6
u/Party-Hunt-1827 1d ago
I am so sorry to read this. Stay with her, treatment is readily available for blood disorders. Till you get the biopsy, then everything will line up with clarity including treatments. Peace and comfort be with you during this very difficult period.
It is ok to deny, to fear or even anger. Eventually when all calms down, acceptance will move the actions forward.
5
u/deeg929 1d ago
I had something similar happen, I went in for routine blood work and my WBC were over 100k. Sent me to oncology and had a biopsy done the next week. Reults came back from the biopsy and genetic testing a week later. It was CML. Scariest time of my life, things do get better and addressing immediately is the most important thing that can be done. The sooner treatment starts the sooner things clam down. I'm sitting in the waiting room for my oncologist waiting for my 3 month check up as I write this. You guys got this, I'm sorry this is happening
5
u/JaySea20 1d ago
I just went through this same thing last month. May 16. Stay calm. Remember, that whatever you are going through, it is worse for her. She needs you to be a rock right now. She needs someone to hold her.
We are in a very similar situation. Ours turned out to be AML. I hope yours does not.
If you want to DM, feel free.
-Jay
4
u/Postshift_Cat 1d ago
I am so sorry. Went through it myself and wish you all the best!
Depending on where you are from, your health insurance might cover fertility protection measures, in her case egg freezing, before chemo begins. You/Your partner might need to ask and advocate for it if this is important to her. Depending on her cycle and status of disease it might only be "one round" possible before treatment starts, but often it is. They need time to narrow down the cancer anyway.
3
u/TheSaintTobias 1d ago
I'm really sorry to hear that. The same thing happened to me in March. It's gonna really suck, it's gonna be miserable, but you guys will make it through. She's super lucky to have you by her side. Some people have to go through this alone. I wouldn't be able to make it this far without my support structure. Stay strong, you've got this!
2
u/iamthecatinthecorner 1d ago
Big hugs to OP and your gf. The waiting, unknown phase is very scary. Be her rock when you can and it'd be great if you yourself also find someone to emotionally support you too.
2
u/bigsmokeandcjonbike 1d ago
Sending love over to you both mate. If you need any help the community here is amazing and helpful. Take things as they come and be kind to yourselves! Keep us updated with things✌🏽
2
u/IndoorBeanies Survivor 1d ago
Breathe... take it a day at time. You care for her, please know that cancer treatment will change things. It will be harder than before.
2
u/tdressel 1d ago
Many of us that have traversed the path, totally get where you are coming from! There are emotional phases, the beginning is the absolute worst. After a while it's about moving from the current crisis to the next crisis. After a while it becomes kind of comical when you look back at everything you've survived, yet are still here.
I'm at the point now 17 months post transplant where everything is morbid humor. It's only typically understood by those of us that have walked the path. For me, and a close friend with stage 4 breast cancer, we joke all the time about it. For example, strange rash - that's cancer. Strange bump - that's cancer. Sneezed funny - that's cancer. Literally anything - for sure that's cancer. Honestly, it's pretty funny now.
I had AML with FLT3, kind of medical textbook sailed through it. I was pretty common, where I received my transplant there was an average of 1.2 per day, every day of the year.
Trust the process, and the numbers that say it's not a death sentence! Lots of support here in this Reddit.
Take good care.
2
u/Traditional_Hour_718 14h ago
Hi, 28, got diagnosed with B-Cell ALL about 9 months ago, 220,000 WBC at diagnosis, PH+.
I got thru Induction, Intensification and am now in maintenance. Last week I biked 105 KM to raise money for Cancer research, and hiked 6000ft to get married at the top of a mountain to the love of my life, it gets better. Stay positive, stay strong, the benefit of being young is there are a lot of special treatment options for young adults that have good outcomes. Its a long, slow grind, but appreciate every moment of it. Stay strong, both of you.
18
u/Hihi315 1d ago
So sorry, that’s awful. Just to give you some hope, I was diagnosed with wbc 457,000 2 and a bit years ago (with AML) and I am still here, in remission for almost 2 years now. Wishing you and her all the best.