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Talk to me about Neulasta (pegfilgrastim) experiences

Posted by ilcpfighter @ilcpfightee, Oct 16, 2022

I am in my first week of TC, had bone pain bad days 4 and 5, started to subside day 6 only to violently wake me up last night (beginning of day 7) feeling like my hips and pelvic were broken. I would appreciate hearing experiences, tips, tricks, anyone...

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Mentor
Helen, Volunteer Mentor | @naturegirl5 | Nov 3 9:12am
In reply to @denisestlouie "Today has been ok. I have had a difficult 3 weeks. I scratched my eye while..." + (show)
@denisestlouie

Today has been ok. I have had a difficult 3 weeks. I scratched my eye while I was out of town. By the time I got home to an eye Dr it was infected. It's healing slowly. Of course the he eye Dr says it's an immune system issue. The oncologist doesn't think they are related. There was one week that I had 7 medical appointments.

I've been emotionally out of control. Not being able to see for 3 weeks is hard and lonely and painful.

The eye feels so much better and my mood improved.

I haven't been working much. I had to cancel the few appointments I set last two weekd. I don't know how people who have to clock in do it. I couldn't at least not last three weeks.

I have 2 more treatments. Then I guess it's a waiting game to see how this treatment worked. I'm supposed to have herceptin to target HER2+ as a maintenance. I'm insisting on a maintenance treatment. That is the only one I'm eligible for.

I tried to get an appointment with my primary Dr to see about anti anxiety meds.It will be 3 months. I couldn't get her staff to move on that so I messaged her to tell her what I need. I got no response. She told me last March there are opening every day. Fortunately I had an appointment with my functional Dr last week. He's also a MD and he prescribed something for me. It's so unfortunate that in order to get medical when you needed you have to see Drs you have to pay out of pocket. I am not happy with any of my providers. I was on a war path and wanted to fire them all. I won't find any that work differently. They are all in the clock for some money grabbing health system. I'm currently seeing Dr from 3 different health systems. They are all the same and inadequate.

My oncologist doesn't even manage his own staff. They report to someone within the system but not the Drs.

So I guess I have had nothing good to say so I'm trying to not say anything.

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@denisestlouie Oh, dear, Denise. I understand why you haven't been posting after your explanation.

We are here regardless of how you are feeling. You are dealing with a serious disease and so why wouldn't you feel anxious and depressed? It sounds to me that you are continuing your efforts to advocate for yourself even when your doctors and providers aren't listening to you. How frustrating that is.

I took 6 weeks off from work to live in Rochester, MN during my radiation therapy. At times I could work remotely however I was working P/T by then and had saved enough during my full-time years of working that I was OK financially. Like you I wondered then and wonder now how people who are on a time clock or have little or no savings can make their way through serious illnesses. I often see fundraisers for local people who are under treatment out-of-town to meet their living costs.

Your personality qualities include assertiveness and tenacity. It's good that you saw your functional medicine physician last week who prescribed an anti-anxiety medication for you. Have you noticed any positive changes since then?

I'm going to close with how I started. We are here whether you have something good to say or not. We are here to support you.

REPLY
dlmdinia | @dlmdinia | Nov 4 9:43am
In reply to @neveragainvaccines "I can’t actually get the brand neulasta cause plan does not pay for it. Seems like..." + (show)
@neveragainvaccines

I can’t actually get the brand neulasta cause plan does not pay for it. Seems like a patch may be better than the shot.

Jump to this post

Neulasta is not just a patch; it is an injector (needle). I was given the choice of patch or shot, and also told many people preferred the shot because they couldn't always tell if the patch injector worked. I chose the shot. I also took Claritin the day before the shot, the day of and the day after. I never had any issues. Good luck.

REPLY
jeffp | @jeffp | 2 days ago

I had to start getting Neulasta after my first round of chemo. I did take the Claritin as prescribed. I didn't have any side effects, either short term or long term. For me I went into my clinic on my 3rd day after treatment to get my F5U "grenade" (this is what we called it) of chemo removed. At that time I also got the Neulasta shot and I would also get a liter of fluids pumped in. The fluids helped me a lot.

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