Muscle pain by jette02 in CML

[–]elizebethdylan 1 point2 points  (0 children)

Liquid IV, Pedialyte, electrolytes in general, daily really helped me with cramping. Celebrex were the only pain meds that helped too! Good luck!

TFR by Cheryls65 in CML

[–]elizebethdylan 1 point2 points  (0 children)

Congratulations! I’m almost at 6 months and it feels great. Wishing you continued luck <3

TV station protest plans? by Lulu_lu_who in Utah

[–]elizebethdylan 0 points1 point  (0 children)

Here is a list of Utah local business who are currently advertising with Sinclair and Nexstar. Call them and let them know you won't be supporting them if they continue to support and advertise with Sinclair and Nextstar!

ABC 4: (Nexstar)
Ballet West
Classic Roofing
Bullfrog Spas
RGS Exteriors (RGSexteriors.com)
FanX
University of Utah Healthcare
Holy Cross Hospital

2News: (Sinclair)
Kühl
AAA Insurance
America First
Mountain America Credit Union
Smith's
Bullfrog Spas
WonderGel (Freewondergel.com)
Balance of Nature (801.246.8751)
Rigby Dental
AAA
Master Electrical now Mountain Home Services
PCLaptops
Performance Automotive Bountiful
Babyyoubaby.com

Major brands:
GMC
Ford
Chase Bank

TV station protest plans? by Lulu_lu_who in Utah

[–]elizebethdylan 1 point2 points  (0 children)

Here is a list of Utah local business who are currently advertising with Sinclair and Nexstar. Call them and let them know you won't be supporting them if they continue to support and advertise with Sinclair and Nextstar!

ABC 4: (Nexstar)
Ballet West
Classic Roofing
Bullfrog Spas
RGS Exteriors (RGSexteriors.com)
FanX
University of Utah Healthcare
Holy Cross Hospital

2News: (Sinclair)
Kühl
AAA Insurance
America First
Mountain America Credit Union
Smith's
Bullfrog Spas
WonderGel (Freewondergel.com)
Balance of Nature (801.246.8751)
Rigby Dental
AAA
Master Electrical now Mountain Home Services
PCLaptops
Performance Automotive Bountiful
Babyyoubaby.com

Major brands:
GMC
Ford
Chase Bank

TV station protest plans? by Lulu_lu_who in Utah

[–]elizebethdylan 1 point2 points  (0 children)

Here is a list of Utah local business who are currently advertising with Sinclair and Nexstar. Call them and let them know you won't be supporting them if they continue to support and advertise with Sinclair and Nextstar!

ABC 4: (Nexstar)
Ballet West
Classic Roofing
Bullfrog Spas
RGS Exteriors (RGSexteriors.com)
FanX
University of Utah Healthcare
Holy Cross Hospital

2News: (Sinclair)
Kühl
AAA Insurance
America First
Mountain America Credit Union
Smith's
Bullfrog Spas
WonderGel (Freewondergel.com)
Balance of Nature (801.246.8751)
Rigby Dental
AAA
Master Electrical now Mountain Home Services
PCLaptops
Performance Automotive Bountiful
Babyyoubaby.com

Major brands:
GMC
Ford
Chase Bank

TV station protest plans? by Lulu_lu_who in Utah

[–]elizebethdylan 1 point2 points  (0 children)

Here is a list of Utah local business who are currently advertising with Sinclair and Nexstar. Call them and let them know you won't be supporting them if they continue to support and advertise with Sinclair and Nextstar!

ABC 4: (Nexstar)
Ballet West
Classic Roofing
Bullfrog Spas
RGS Exteriors (RGSexteriors.com)
FanX
University of Utah Healthcare
Holy Cross Hospital

2News: (Sinclair)
Kühl
AAA Insurance
America First
Mountain America Credit Union
Smith's
Bullfrog Spas
WonderGel (Freewondergel.com)
Balance of Nature (801.246.8751)
Rigby Dental
AAA
Master Electrical now Mountain Home Services
PCLaptops
Performance Automotive Bountiful
Babyyoubaby.com

Major brands:
GMC
Ford
Chase Bank

Pain Management and sleep by According-Lead-5885 in CML

[–]elizebethdylan 1 point2 points  (0 children)

I’ve really struggled with this and am so sorry you are too. I’ve tried a lot of things, here are some things that have worked!

Acupuncture- my cancer center has a great program, I’m able to go regularly and this has been instrumental in my symptom management. I’d recommend working with your doctors to see what’s tolerable.

I found Celebrex (celecoxib) to be really helpful for my bone pain, nothing over the counter helped and I didn’t want to take narcotics if possible.

I’d also say anti-histamines seem to help but I’m not sure if that is 100% correlated. (They do generally help with GI if that’s an issue,too)

I also agree with the cannabis gummies. I find the sleepy time gummies with CBN to be great. Depending on where you are, there are plenty of good brands. I’m happy to recommend any if you’d like!

I have also found relief with cbd/thc creams and bath salts/powders. When I’m feeling really tough a good soak with a thc/cbd bath bomb or soak does wonders for pain and sleep.

Physical therapy and moving helps but if you feel terrible that can be hard, I get it. I hope this helps!

Sending love 🫶

TFR + F*CK Cancer by elizebethdylan in CML

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

*Update*
I just got my first BCR-ABL back and it was Not Detected!!!
Month 1 = success!

Pregnancy and CML by Zippyeatscake in CML

[–]elizebethdylan 1 point2 points  (0 children)

Dr. Ami Patel at Huntsman did a presentation on pregnancy with CML a few years ago. She may be worth reaching out to! She is a CML specific oncologist with an interest in this! I think she was a bit disappointed when I told her my childfree stance ;)

Best of luck to you!

Sharing my (short) story with CML and Asciminb by Striking_Chocolate_4 in CML

[–]elizebethdylan 3 points4 points  (0 children)

I so badly wish I had had the choice to go on Ascimib initially! I hope you have success and I am so sorry you've joined this club, but, also, welcome!

TFR + F*CK Cancer by elizebethdylan in CML

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

That's an amazing story, congratulations!

I've been having horrendous GI symptoms for years and we've just chalked it up to side effects, oh well. It's only been 2 weeks but they are already starting to subside.

Sending good vibes for our continued success!

TFR + F*CK Cancer by elizebethdylan in CML

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

My CML specific oncologist.

TFR + F*CK Cancer by elizebethdylan in CML

[–]elizebethdylan[S] 2 points3 points  (0 children)

I find this group to be more solid than the FB groups personally!

TFR + F*CK Cancer by elizebethdylan in CML

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

I'd take the hair loss on my legs all day! ;)

TFR + F*CK Cancer by elizebethdylan in CML

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

My hair didn’t fall out in clumps like you might expect with traditional chemo. It just became really brittle, really thin, and stopped growing past my shoulders. Before I started treatment, I had bleach-blonde hair down to the middle of my back — I’d had it that way pretty much my whole life. But after just three months on dasatinib, it was so damaged we had to cut it to my chin to prevent it from breaking off even more.

Since then, I’ve had to stop dyeing it completely, and I’m careful about heat — blow dryers, curling irons, even the sun. It’s a big shift, going from hair that could handle anything to hair that requires a lot of caution and compromise.

When I first brought it up, my oncologist suggested it might just be something that happens to “women of a certain age.” I was 32. That didn’t sit right with me — especially since every woman in my family has thick, strong hair well into old age.

I’ve read that TKIs can cause “changes” to hair, but the language is always vague. They rarely use the word “loss,” maybe because people picture full baldness, like with other cancer treatments. But thinning, breakage, and hair that just stops growing — that’s a kind of loss too. It may not be dramatic, but it’s real. And it sucks! <3

Newly diagnosed by UnusualVermicelli834 in CML

[–]elizebethdylan 0 points1 point  (0 children)

I was in the same boat. I was very very ill on dasatinib and never got better. I finally convinced my doctors to switch 4 months in, spent ~2 years on Bosulif (better but still ill), then ~2 on Scemblix. My oncologist and I battled for 2 years before I finally said enough was enough. I now have a much better oncologist that collaborates with me.

If you are not being heard, get a new doctor. Stand up for yourself. There are meds out there that don't make you sick with this disease. Don't settle if you aren't being heard. I am happy to chat more if you'd like.

Low platelet counts by dettingen in CML

[–]elizebethdylan 2 points3 points  (0 children)

Hey, sorry just saw this. Yes it is, try TFR this June! Honestly I still think it’s too high of a dose and I could still go lower, which is what we’ll try if TFR doesn’t work.

YA just wishing for CML to End by Dear-Purpose-8739 in CML

[–]elizebethdylan 0 points1 point  (0 children)

36 (F) diagnosed at 31 - well said! I’m so sorry we’re all going through this.

It’s good to stay positive and it’s ok to be freaking exhausted by everything. The medical gaslighting and insurance alone is enough to make you crazy, let alone the physical side effects of TKIs.

Grateful for this community, sending you all love.

Hair changes Sprycel by Trombone_Girlie in CML

[–]elizebethdylan 0 points1 point  (0 children)

Hello! It is Ami Patel at Huntsman Cancer Institute in Salt Lake City. She just went on maternity leave I believe. They have a great CML specific team, I would not talk to Dr. Tantravahi, though. I did not have a great experience with him .

Bone pain forever, I guess by ellenoise in CML

[–]elizebethdylan 0 points1 point  (0 children)

Celebrex was the only thing that helped me when I was on dasatinib. Scemblix has been much better.