Palliative Care

Oh, and I will add that I have used Benadryl and melatonin to help me sleep - but I don't like them because it leaves me feeling hung over the next day - can't stay awake for most of the day. I usually sleep best with Gabapentin and Vicodin

Hi Rachel -

Welcome to our group. I, like you, have learned so much from these women on this board. I just wanted to let you know that I have had trouble sleeping since being diagnosed Stage IV and have been on Ambien 10mg tablets for quite some time now. It really helps me sleep well, which is so vital for us! Also, I don't have that "hung over" feeling in the morning. I realize it is probably addictive, but my oncologist wasn't concerned as he thinks it's best to address my needs now and he said once we get my cancer under control, we can worry about it then! I agree with being assertive - my oncologist is helpful but I find it best to articulate my needs to address issues promptly.

Best of luck at your appointment on Tuesday! Keep us updated on how you are doing.

Sheri

HI Rachel, We're on parallel tracks at different life stages. I have a stage 4 diagnosis with the same treatment--and some of the same side effects plus some. This is my third time around --when kids were 3 and 5, I was first diagnosed with stage two. Managing to be myself through chemo and radiation was a good trick and I managed reasonably well. Now, 21 years later I have stage 4, and with age and wisdom and grown kids, I'm not as interested in being Wonder Woman and am contemplating early retirement. Still, managing side effects is a good idea at any age!

I'm not sleeping too badly. It's hard to distract my mind from how I feel (and the cause). I use melatonin (MidNite brand) when I wake up in the dark. No hung over feelings. I'd avoid Benadryl for that reason. If that doesn't help, I read til I'm sleepy again. And I try not to fret about not sleeping (which keeps me awake), and take advantage of moments to rest. Experiment with warmer or cooler jammies or blankets. I recently found that I sleep better a few degrees warmer.

Advocating for yourself is a big deal. I like what stagefree said. My oncologist is "interested" in my SE but isn't really dealing with them. She has recommended accupuncture for my lymphedema. The damage to my shoulder from the axillary surgery seems beyond my team too. No doctor has helped with nutrition, so I ask friends and read what I can. Did you know that the reason to take ibrance with food is that it is more efficacious--better absorbed-- with a high protein, balanced nutrition meal? I just figured it was to protect my stomach since no one said...

Remember that staging is a description and not a sentence. Mine is stage 4 as a third occurrence with "a little metastasis" to bones and lung --which is being knocked back after 7 months on with Ibrance/letrozole/zometa. I work at a biotech institute and am confident that when/if ibrance quits working, a new thing will replace it.

I find that the medical system thinks of "palliative care" as what you provide when there's little chance of remission--then they manage SE and symptoms. It makes little sense that help w side effects isn't provided earlier. I live in CA which allows both medical marijuana and recreational, and even that hasn't been suggested for nausea. I'm not depressed--just naturally concerned, and so I don't want to start medicating. But I certainly support those who do.

Bottom line--If we don't ask for help, we surely won't get it!

Buff