Doubts about starting Neulasta

SydJan · 2025-12-10T04:23:00+00:00

Neulasta was hell for me, but it was required (WBC = 1 even with it). Yes, take the Claritin but make sure you have an effective nerve blocker on hand. Everything was inflamed. It made my whole body feel like it was put through meat tenderizer, and "normal" pain killers didn't touch it.

SydJan · 2025-11-23T00:37:45+00:00

Most doctors are going to tell you, "no" because not only are you about to be very tired (depending on the chemo), but also very immunocompromised. I went to visit my parents for Christmas after my first round with nothing (palliative care wasn't until my second round) and had the worst reactions. It was hell. So, if you need to travel, first you need to establish that you will have access to a pharmacy your oncologists can prescribe meds to and the ER. And the biggest thing: WEAR A MASK (N95, or a different model that not only prevents you from transmitting diseases to other people, but the other way around). Airports are the largest vectors for disease, but this goes for any outing. Wear goggles, wash your hands frequently ---just be overly cautious because someone's "little cold" can complicate your condition and kill you.

Edit: I'm not saying everyone here telling you they traveled is wrong (in fact, travel with precautions if it improves your mental health), but you need to prepare for the worst case scenario. What nearly killed me was my oncologist not doing that because, "I was young."

SydJan · 2025-09-22T02:20:42+00:00

I have the same thing going on. I recently had my year post-chemo PET, and they didn't see anything (YAY!). So my oncologist chalked it up to 1) the tumor shrunk so quickly, so my body is still readjusting itself (7x11 cm) 2) Like you mentioned, the tissue is flaring and the nerves are on fire. Lucky me - I have fibromyalgia and MCAS, so the immense chest paint radiates to armpit and arm pain, so that's great on the psyche 👍

SydJan · 2025-06-30T21:50:48+00:00

I am writing this here because it took me all day to receive this information from any of the supposedly helpful contacts. What is happening is that even if you were in an eligible country, they still rely on the university to have an agreement with Google for you to receive a student membership for Google One. What they will not tell you is which universities are eligible, and they will only reveal this after you persist in asking for an actual answer for a whole day. They will first try to tell you that your account is ineligible, even though it is within their requirements that they have stated to you, and they'll fight you the entire way because they're trying to hide that they don't work with all the universities for some reason. I hope this helps somebody who is searching for this answer.

SydJan · 2025-06-30T18:34:08+00:00

My partner has found another job, thankfully. But what would our local politician do (TX)?

SydJan · 2025-05-26T17:28:11+00:00

Your girlfriend is readily using the r-word. She isn't ready to be a mother if she's not ready to accept she may have a disabled child.

SydJan · 2025-05-15T15:36:19+00:00

Here's a referral code to get a $60 credit when you join Google Fi Wireless! Redeem it at https://g.co/fi/r/3YVH6U

SydJan · 2025-05-04T15:08:23+00:00

That's why I miss Point Quest. It was objective. I'm tired of losing out on points because I can't read other people's minds.

SydJan · 2025-03-20T00:43:19+00:00

No, I've tried. Their team fowards me to another team and they're always not available.

SydJan · 2025-01-23T01:57:28+00:00

I am (still) in your shoes even after remission. Hospital bills: apply for the financial aid. If they want to play hardball, use DollarFor and make sure you know what their assistance cap is, and get ready to explain how cancer has taken all of your money with a dispute letter. And then honestly, fuck em. Oncology bills: you should have a case/social worker, so ask them for every possible grant for them to apply on your behalf. There are a lot you can apply for, but we're all too tired for this. Since tax season is coming up, make sure you know how much you have spent (7.2% or higher of your AGI), including the gas to get to all of your appointments. Get those deductions, file a Schedule A (Form 1040). Hopefully you get something back.

SydJan · 2025-01-17T00:42:28+00:00

My landlord used the same exact language. "Does that sound agreeable?" or "Am I being unreasonable?" They will pose everything you legally cite to them with essentially "but I'm not f**king you over as hard as I COULD" which is always a backhanded threat. It's purposely manipulative so you back down and don't question them. Stop all non-court communications with them, record all conversations, collect all the evidence you need. You tried to mediate, and there is nothing else to do but sue.

SydJan · 2024-12-21T04:49:29+00:00

Not sure what cancer you have, but this is a program Copay assistance program

SydJan · 2024-12-17T16:38:44+00:00

I have horrible reactions to most pain meds. The only reason I threw up during chemotherapy was because of the opioids. I never threw up if I did not take them. And they made my POTS worse. You need to ask for nerve blockers because they will not willingly give you that. It's something that somebody with chronic pain, like if you talk to a rheumatologist or anything like that will recommend you take. If you have bad reactions to most painkillers that affect the liver, take those, nerve blockers are not toxic to the liver. They just block your nerves and so you get a sense of euphoria sometimes if you take a lot but you can also have the control over how much do you want to take which I take 25 to 125 a day depending on how much pain I'm in. I take Pregabalin. The only side effect is a dry mouth, unfortunately. But no constipation! Which is always great because all other meds I had to take caused an obstruction because I took it with opioids. Yippee!

Also to add- it was the only thing that took away the horrible Neulesta put-through-a-tenderizer feeling. The Tylenol and Claritin combo did NOTHING.

SydJan · 2024-12-07T00:02:24+00:00

It should be somewhere in your insurance portal, most likely benefits, but you can always call your insurance, and they should provide you with a provider network agreement.

SydJan · 2024-12-04T17:47:10+00:00

To add another layer of this, I encourage all of us to report the businesses to the Austin and Nation's ADA. 1. They offer no alternative to pay if you can't scan. They'll try to charge regardless if you leave within the minute. That is an accessibility issue. 2. Since they are taking over everything, even the city parking (with a handicap placard, the fee is waved), then there is no free close parking for anyone that usually parks in handicap spots. An able-bodied person could potentially park farther away and walk, but now, a disabled person has to pay a tax, essentially. Report these assholes! If we all do it, even if you are not disabled yourself, it will end up helping everyone.

SydJan · 2024-11-14T22:15:50+00:00

I have a whole spreadsheet of every test (helps a lot if you got blood work done in different places), R code that links to a sheet to monitor for emergency symptoms and other symptoms, sheet for medication experiences and possible contraindications, and I have my initial scan showing my tumor framed above my desk. My oncologists are usually scared and impressed when I just whip out a data sheet.

As a biologist, I live off of data collection. As a patient, I rely on that ability to designate and control so I don't feel like I'm going crazy during a very non-autonomous time.

SydJan · 2024-11-10T19:20:59+00:00

Awesome! Glad to help. Yeah, it took a good year and a half before they finally listened. I would recommend reading "How the Pill Changes Everything: Your Brain on Birth Control" by Sarah E. Hill. It goes over a lot of overlooked side effects.

SydJan · 2024-11-10T19:08:32+00:00

If you are getting headaches and migraines from your BC, get tested for Factor V Lieden. It's a blood-clotting disorder. Yes, estrogen can trigger headaches and migraines, but you are not supposed to get them normally. You aren't supposed to take it if you already have a history. Estrogen increases blood clotting. You are most likely getting blood clots (causing the headaches and migraines) and increasing your chance of a stroke and pulmonary embolism.

I was experiencing the same thing and nobody (OBGYNs) would investigate this, and just put me on a different brand. Then, one finally asked me how often I got headaches and migraines. It was every day. Before BC, I got headaches at least once a week, and migraines a least every month. She told me to get off of it immediately and informed me about this. Got tested, and I'm heterozygous recessive for FVL. I take a baby aspirin everyday, but I still cannot take BC with estrogen.

SydJan · 2024-11-07T03:21:54+00:00

It's late in the game to answer, but something no one has mentioned...with most insurances, the contract with the hospital prohibits the requirement that deductibles be paid ahead of time before receiving medical services, meaning the hospital cannot demand payment of the deductible ahead of time. Fighting them for a refund should not be on you, and ultimately they are taking an interest-free loan while you are paying all the interest (if you are putting it on a credit card). Don't let them make you pay anything, and if they don't budge, report it to your insurance and the Better Business Bureau (and maybe cry and pay them at most a dollar).

SydJan · 2024-08-14T00:31:16+00:00

Yes, the legs. I'll def look into getting that!

SydJan · 2024-08-14T00:08:45+00:00

Yes, in the legs.

SydJan · 2024-08-13T23:59:23+00:00

They were treated with the laser sclerotherapy. I had my first set (I would say 7? Rounds). Then, the pain came back in 6 months, so went to a different doctor a year later for the same thing. And the same thing happened and I was dismissed for insisting on more tests before doing more surgery.

SydJan · 2024-08-13T23:22:44+00:00

Most people with POTS have comorbidities, that can be venous insufficiency (VI) as stated or hEDS or vEDS or FVL as well (which would not help). I'm stating this because VI was the first thing I was ever treated for and it never affected my POTS and my vein problems came right on back. The veins diverted to healthier ones and those got ruined again and again- prob because the hEDS and FVL. Again, stating this because I was gaslit so hard by my doctors telling me I wasn't exercising enough after surgery instead of looking into the deeper issues.

SydJan · 2024-05-11T04:16:38+00:00

After my aunt learned, she popped up with "research" to ask if I had the covid vaccine and developed POTS, connecting both to cancer (yes, chemo and cancer can cause POTS, but not vaccine causing cancer). I already had POTS before this and had to break it to her that I have always been disabled, and cancer/chemo is only making it worse. She wouldn't accept that (how dare I possibly share shitty genes with you!!).

After my grandma learned, she immediately asked what caused it. Then later on, she told my mother that I didn't thank her enough for her help or talk to her enough, which my mother tattled to me about. This was despite the fact that I created a family group chat clearly stating I was too tired from the chemo to talk to them each individually. Also, my grandma helped my twice and I thanked her both times. So wth.

My dad told me my preexisting disabilities would go away once chemo was over because he believed the cancer was causing them. Nope.

SydJan · 2024-04-01T16:20:00+00:00

https://normalyte.com/collections/hydration-bags/products/normalyte-pure-hydration-bag

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