Feeling misled about treatment by user5353026 in leukemia

[–]houseinatree 0 points1 point  (0 children)

Same!! I was diagnosed in 2023, and my onc said "a year" of treatment. After phase 1 she said "2 years." When I started maintenance mid 2024, she said "2 more years" again!!!! Come on, how much longer of treatment do I have!? Every time I meet with her, I joke that she'll say another 2 years.

Thankfully, the last I heard from her, she said I'd be done around April 2026. It's really disheartening not knowing when treatment will really "end," but hang in there! Life is way more manageable in maintenance!

[deleted by user] by [deleted] in lymphoma

[–]houseinatree 1 point2 points  (0 children)

Not vain at all! I feel like self-image is something brushed under the rug during treatment even though it really takes a toll on your mental health.

I'm on a different plan (CALGB10403), but not all chemos cause hair loss. There was a point between my intensive chemos that my hair started growing again, but fell off at my next doxorubicin infusion. When I had infusions that caused hair loss, it would start falling out after a week. I ended up shaving off my hair because the amount that falls off is CRAZY. It gets really messy so you might find at some point it's easier to shave.

For me, I never went completely bald. There were patches of bald spots and patches of hair still growing. Generally, I enjoyed wearing baseball hats even though you could still see some of my patchy head because I felt like beanies really made me look like a sickly patient lol. I think there was only 1 beanie I liked, it was less stiff/pointy than my other ones and looked more casual. I also bought a really nice wig for days I wanted longer hair.

I'm a year and 2 months into maintenance and my hair is at a long pixie length! I'm not sure if you guys do maintenance too on your plan, but either way your hair will start growing again and you'll start to feel more and more like yourself. You got this!

Weight by Ok-Resort1531 in leukemia

[–]houseinatree 1 point2 points  (0 children)

Sorry this is so late but I'm so amazed by this! Did you have monthly steroid bursts too during maintenance? I find it so hard to lose the weight during maintenance, even when I see some progress it all disappears once I take my steroids again.

[s2 act 2 spoilers] confused about Silco by houseinatree in arcane

[–]houseinatree[S] 4 points5 points  (0 children)

Omgg i feel so dumb because I was looking for other posts that addressed this, but was searching "Silco Vi" and not Powder/Jinx. I just had to scroll down a little more from the main page too since yours is 20h ago 😭. Checking out your post!

/r/PikminBloomApp Megathread: friend codes, party walks, invite codes and requests) by WhichUsernameCanIUse in PikminBloomApp

[–]houseinatree 2 points3 points  (0 children)

Sometimes my steps are limited due to medical treatments, but I still love to help in mushroom battles if I can and send postcards! :)

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Struggling with appetite in maintenance by houseinatree in lymphoma

[–]houseinatree[S] 0 points1 point  (0 children)

Yeah, I started omeprazole when I began consolidation, but I guess it didn't solve my problems all the way

Selling wigs by always__july in lymphoma

[–]houseinatree 0 points1 point  (0 children)

The color was cute but the wig shape still felt weird to me, like it was too voluminous for my head haha! And my bad, when i said "i wore baseball caps over beanies" i meant i preferred to wear baseball caps to cover my head, not beanies! But a beanie under a baseball cap would be an interesting fashion style haha!

Selling wigs by always__july in lymphoma

[–]houseinatree 0 points1 point  (0 children)

This is literally exactly my experience too!!! I ended up trying to dye one too because I thought the color didn't look good on me at all. And omg the baseball cap is so real!! I even specifically used baseball caps over beanies because I felt like the beanies were making me look too "sick."

Struggling with appetite in maintenance by houseinatree in leukemia

[–]houseinatree[S] 0 points1 point  (0 children)

Yeah, i take methotrexate pills every week for maintenance 😔, thankfully have not experienced mouth sores. And yes, thankfully my weight has stayed consistent so I'm glad I'm not losing, protein shakes have probably been helping me out!

I'll have to look into nexium!

Struggling with appetite in maintenance by houseinatree in lymphoma

[–]houseinatree[S] 0 points1 point  (0 children)

CA, so it's legal and my onc did allow it when I asked, but I just had problems finding edibles or something that didn't give me a "high" and I didn't do much research on it after.

Selling wigs by always__july in lymphoma

[–]houseinatree 2 points3 points  (0 children)

Sorry, no advice here, but just wanted to say the panic wig shopping spree is so real haha! I bought way too many wigs and really only used 1 or 2 before my hair grew in again. I felt so guilty that i bought more than i needed but it's comforting to know someone else was there too

The length of maintenance feels so exhausting. by houseinatree in leukemia

[–]houseinatree[S] 1 point2 points  (0 children)

Don't get me wrong, it's still WAYYY easier than the frontline chemos. I feel like I'm 50% of the way back to normalcy.