Posts by Ashley Grant86

Hey everyone. Just wanted to jump in and say thanks to vividsailor7 for actually carving out time to hang out on this forum and share some advice.
It’s pretty rare to find people who genuinely want to help, but trust me, every little bit counts—whether it's someone just listening to you vent or offering tips on treatment.
I'm keeping all of you and your loved ones in my prayers; I really hope things start looking up.

And honestly, I'm rooting for everyone to get better soon, because if you ask me, half the battle is all in your head anyway.

Kate Brooks2 said:Well, I'm back again 🙂 and actually bringing some decent news for once. My white blood cell count crawled up from a measly 0.6 to 4.2. Turns out fighting for every single bite and sip was actually worth the effort. They were down at 6.4 before we started therapy, so fingers crossed we can nudge them up even more. Best regards

regards Lili. So glad to see everyone staying tough and things looking up.
You just gotta have faith. Like the old saying goes, half the battle is mental, and I’ve got zero doubt everything's gonna turn out fine.
Keep that positive energy going. All the best.
It's definitely heading in the right direction seeing those WBC numbers bounce back.🙂🙂🙂

Kate Brooks2 said:Ashley Grant86... honestly, I’m not a fan of those prognostications because actual experts never really give them. I know people who were basically given a month to live, yet they're still kicking years later. It’s all just so individual, you know? From what you're telling me, your mom sounds like a real fighter. Just be grateful she's eating and staying mobile, and maybe try to nudge her toward therapy—if nothing else, just for the sake of her quality of life. Hang in there and find some strength for whatever tomorrow brings. 🙂 Best regards P. S. Joy celebrate the tiny wins, just like I am right now 🙂))))))) My brother-in-law just polished off a whole bowl of potato, onion, carrot, and ground Lana seed soup 🙂)))))))))) Hooray 🙂We just keep fighting and refuse to back down (my husband and I make a killer team)

Morning, regards Lili. Five o'clock. I'm totally with you on everything you said..
Don't want to sound like I'm being a total downer by saying I'm not, but yeah, sometimes things just suck.
There's always someone who thinks they know better, so advice is never a bad thing.
Thanks, and best regards.🙂

vividsailor7 said:Regarding tea, maybe try some chamomile or lemon balm. Also, is she having any chest pains? What color is her phlegm or cough? Any nausea or vomiting? How's her stool looking? Her appetite? Urination? Look, I'm speaking from experience at work, but honestly, even just from family, I know how stubborn oncology patients can be. Since she seemed to be doing better while on Thalidomide—well, clinically speaking, since you didn't mention her subjective feeling—you really need to sit her down and calmly explain that this is all for her own good.

The pain isn't constant; it mostly hits at night for now. Hard to say about the chest because she hasn't really complained, but sometimes when it hurts, she just won't say anything unless it gets intense. Sputum is white, kind of whitish. Stool, appetite, and urination are all normal. She’s been sweating, though—her doctor mentioned the frequent sweating is definitely a symptom.
I checked her blood sugar yesterday and it was 7.5. It used to be 10 or 12, but that was mostly due to the therapy.
She was feeling fine up until now, but things are changing because I'm seeing changes in her neck, and we haven't even done the new tests yet.

It's such a struggle explaining stuff to older folks. As soon as they feel even slightly okay, they think everything's perfect and refuse to go to the hospital or do anything. And unfortunately, by then, it's always too late.
The main thing is just making sure there's no pain, at least in my book. I asked about alternative stuff, and apparently, there's nothing out there besides actual medicine.

vividsailor7 said:I’m pretty much on the same page as Kate Brooks2 here; I don't really have anything else to add. Is she feeling pain all over her abdomen, or just the upper or lower part? Has she had any bowel movements, and what color were they? How’s her appetite? Any other stomach issues popping up?

It's the lower abdomen that hurts, and she’s coughing constantly—just hacking up some kind of mucus.

She’s got swollen lymph nodes inside her abdomen, around her neck, and under her armpits... maybe something like 25x35mm, if I recall correctly.
They actually shrunk back down after some antibiotics and a one-day treatment session, and her white blood cell count dropped from 93 down to 14. But since she stopped everything, it’s all coming back.
Honestly, though, trying to convince her to go to the hospital is a nightmare. She’s way too active, always moving around, so she Kazo that being stuck in a hospital would basically kill her right then and there.
She’s been on Leukeran so far, plus those one-day treatments. The white blood cell count improved, but there hasn't been any significant shrinking happening inside the abdomen.

Kate Brooks2 said:Man, I am so incredibly sorry about what you’re going through. Honestly, I get it—we’ve been fighting this exact same battle for months now. I know how insanely expensive and just plain exhausting everything is, but you’ve gotta keep swinging. Try boosting the immune system with natural stuff, like beet, carrot, and lemon juice. Make sure they eat plenty of fruits and veggies... berries and citrus are best, and for veggies, stick to anything green plus tomatoes. Don't lose hope because leukemia can be treated successfully; the road is long and bumpy as hell, but it's worth the fight. One more thing from me: don't ditch the doctors. Even if you're looking into alternative options, listen to them. They don't always say much, but I really think you need to follow their lead. Hang in there and take care of yourself and your mom.

Thanks for the support and the kind words... you're totally right about everything, but this specific type of leukemia is basically incurable because there are just way too many different subtypes out there. My doctor told me the average life expectancy with this particular strain is only about 6 to 10 years.

Hey everyone.
My mom is battling chronic lymphocytic leukemia, or CLL.
She’s been living with this diagnosis for about two years now—maybe longer, actually—but we didn't catch it sooner because she wasn't showing any symptoms.
Ever since I found out what she was dealing with last year, I've basically gone down every rabbit hole imaginable, trying to learn everything there is to know so I can help her somehow.

The cold, hard truth is that there isn't a cure, and even her hematologist told me straight up that we're looking at a predictable outcome.

It’s been an endless cycle of blood work, waiting for CT scans, and for the last seven months, we've been paying out of pocket for various treatments—some one-day clinic visits, others just managing things with antibiotics at home.
Since the treatments have had to escalate, we reached a point where she really should have been hospitalized, but she flat-out refused. She’s super active naturally and just can't stand being cooped up; she needs people, loves to chat, likes to walk around, and honestly, she felt okay enough that I didn't want to force her into a hospital bed. It just didn't feel right.

We haven't gone anywhere since the spring—no tests, nothing. Things seemed fine, but deep down, I knew the lymph nodes would eventually start swelling and things would take a turn for the worse because there's no fix for this.

Two days ago, early in the morning, she told me her abdomen was hurting and she wasn't feeling well. She said she'd agree to go to the hospital, but only "once it cools down a bit."
I can see things are getting bad, but I'm just lost on how to help.
I hate seeing her suffer like this, but I have to work, and there's nobody else to lean on but me.

Honestly, this whole situation is slowly killing me too. I can't find a way out. I need to be by her side, but I also have to make a living, and juggling both is draining every ounce of my energy, not to mention the massive financial hit.

Does anyone here have experience with this? Is there any kind of alternative to at least make her more comfortable, or maybe some advice on how to cope with it all? This disease drags on forever and just exhausts everyone around it.

Any kind of help or even just a tip on how to make this whole mess a little easier to bear would mean a lot.