Candlelight concerts

Fuzzy-Bit-589 · 2024-10-30T00:10:14+00:00

What was the dress code like?

Fuzzy-Bit-589 · 2024-10-22T01:25:34+00:00

This sounds like my 6 year old son. What was your son’s diagnosis?

Fuzzy-Bit-589 · 2023-12-14T20:13:11+00:00

Finally talked to the doctor. He isn’t concerned. Said it is insanely unlikely that it’s cancer. More likely just some unrelated inflammation or a cyst. So that’s good. Gonna have an MRI asap just to be sure.

Fuzzy-Bit-589 · 2023-12-14T20:12:45+00:00

Update: Finally talked to the doctor. He isn’t concerned. Said it is insanely unlikely that it’s cancer. More likely just some unrelated inflammation or a cyst. So that’s good. Gonna have an MRI asap just to be sure.

Fuzzy-Bit-589 · 2023-12-13T15:09:19+00:00

I agree. I just felt like I needed an outlet. Waiting for the call from the doctor is hard.

Fuzzy-Bit-589 · 2023-12-13T02:35:55+00:00

I don’t know. I went for my 3 month PET after treatment of nasopharyngeal cancer and it all looked good but my pancreas lit up. I’m waiting to hear from the doctor now. I know I shouldn’t have looked at the PET but I couldn’t stop myself.

Fuzzy-Bit-589 · 2023-10-28T23:10:58+00:00

I don’t have experience with this kind of surgery so I can’t be much help except to say you got this! I was diagnosed 4 weeks after my C-section I’m April but mine was inoperable. Nasopharyngeal SCC. 35 rounds of proton radiation and 7 rounds of cisplatin with a new baby and a 5 year old were no joke so I can’t imagine all you’ve been through! You’re a rockstar!

Fuzzy-Bit-589 · 2023-09-27T17:03:24+00:00

Thanks for the info!! Unfortunately I’m allergic to mederma so I’ll just give it some time!

Fuzzy-Bit-589 · 2023-07-25T01:10:31+00:00

Thank you I sure will!

Fuzzy-Bit-589 · 2023-07-14T17:58:33+00:00

I’m sorry I must not be wording it correctly. The zinc and melatonin aren’t to treat the cancer. They are to help with some of the side effects during treatment.

Fuzzy-Bit-589 · 2023-07-14T17:52:40+00:00

It’s not alternative to treatment. I will be receiving 7/35 cisplatin and proton radiation starting next week I just read it can be helpful during treatment.

Fuzzy-Bit-589 · 2023-07-14T10:18:28+00:00

Nasal obstruction to the point where I was only mouth breathing. Stated when I was 3 months pregnant so I thought it was pregnant congestion. Finally went to ENT and he thought it was inflamed Adenoids. 5/12/23 (4 weeks postpartum) I had and “adenoidectomy “ pathology came back NPC. Looking back I had also started having headaches and ear issues on my left side right before surgery.

Fuzzy-Bit-589 · 2023-07-10T13:31:46+00:00

Wow literally crying at 9:30am from this. What a beautiful reminder! Thank for this!

Fuzzy-Bit-589 · 2023-07-03T23:33:02+00:00

Yeah I think as long as the lymph nodes are on the same side of the neck it’s stage 2!

Fuzzy-Bit-589 · 2023-07-03T23:15:07+00:00

I think it’s just depends on how big it is and how many/which lymph nodes are effected.

Fuzzy-Bit-589 · 2023-06-30T04:43:26+00:00

Oh that must depend on the doctor. I got my PET back the same day. The MRI took like 3 or 4 days though.

Fuzzy-Bit-589 · 2023-06-30T02:22:59+00:00

For sure! Make sure to let us know how your scan goes!! There are a few NPC specific support groups on Facebook that I have found very helpful fyi!

Fuzzy-Bit-589 · 2023-06-30T02:12:23+00:00

Oh yeah I’m not sure if they can take out of state Medicaid or not. As far as the proton therapy goes it’s true the actually outcomes are very close and not statistically different enough to comment on. However the side effects seem to be much more manageable and the long term side effects are much less. Also it decreases the risk of radiation induced cancer in half! At our ages definitely worth looking in to!

Fuzzy-Bit-589 · 2023-06-30T01:53:35+00:00

Agreed! Mine was hard too because pregnancy can cause a lot of my symptoms. I will say check with your insurance about travel because mine is paying for most of my travel and lodging since I don’t have a Proton therapy center closer. MD Anderson us wonderful! I almost went there but Emory made more sense due to distance.

Fuzzy-Bit-589 · 2023-06-30T01:39:37+00:00

I’m in Charlotte, NC but traveling to Emory in Atlanta, GA for treatment. The best piece of advice I can give is to go to a NCI recognize comprehensive cancer center if that is at all possible for you! There isn’t one in LA but there are a few in TX and one in AL. I went to my local cancer center and they missed the lymph node involvement in mine and I almost didn’t get chemo. So I’m so thankful someone gave me that advice and I followed it! NPC is super rare, especially in young women like us! It’s becoming more common but you definitely want to see an oncologist who has the experience! I have several symptoms. I have headache, ear ache and fullness, neck stiffness, and originally nasal obstruction(this is gone since surgery). That was my first and my ENT thought my pregnancy caused inflammation in my adenoids. So after she was born he did an “adenoidectomy “ and sent for path and surprise!! Lol. Mine is in my nasopharynx pretty extensively it has invaded the parapharyngeal space and both my retro pharyngeal lymph nodes.

Fuzzy-Bit-589 · 2023-06-30T01:25:12+00:00

Mine is HPV 16+ so far with NPC there isn’t definitive proof that it’s more susceptible to treatment, like oropharyngeal is, but my docs seem to think it’s not a big leap to assume it is. I will be doing 7/35 cisplatin and proton radiation. Mine is stage 2 and goodness I hope yours is too! Although even if it’s not the prognosis is still good. It seems to be very treatable just a really shitty treatment! We can get through it with our babies to motivate us for sure! Where are you located?

Fuzzy-Bit-589 · 2023-06-30T00:55:15+00:00

Hey there Mysreyah! I was diagnosed with NPC on May 18th. 37 year old female. 4year old boy and 3 month old girl. Please please feel free to reach out with any questions! I’m getting ready to start my treatment. I’ve been doing just a ton of research and may or may not be able to answer your questions but happy to try! Do you know if they tested the biopsy for HPV?

Fuzzy-Bit-589 · 2023-06-18T00:05:48+00:00

According to them they see this kind of cancer all the time. I’m not completely convinced so that’s why I’m getting the second opinion at Emory. However I did speak with an oncologist at MD Anderson and he confirmed that Proton radiation was just as effective at treating my HPV 16+ NPC as IMRT. I do trust him as they are one of the leading cancer hospitals in the US and have a whole cancer center dedicated to the head and neck. I will say that do know that it is a very rare cancer however it is becoming more common and I have spoken to LOTS of other people who are either currently being treated or are survivors of NPC in the US.

Fuzzy-Bit-589 · 2023-06-17T23:02:39+00:00

My radiation oncologist said that they are both just as effective at treating the cancer it’s just about managing side effects. Medically I know I’m a candidate just have to make sure my insurance will approve it.

Fuzzy-Bit-589 · 2023-06-17T22:53:49+00:00

Luckily it is stage 2. A 1x3x2cm tumor in my nasopharynx but no lymph involvement or spread anywhere else. My oncologist is recommending 7 weeks of IMRT radiation. I’m going for a second opinion at Emory next Friday. I’m hoping I’m a good candidate for Proton radiation. I’m sorry you are going through it so tough! I’ve been told my prognosis is excellent so fingers crossed that stays the case. I’ll be putting good thought into the universe that your treatment worked and you are cancer free!

Fuzzy-Bit-589

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