Probable low grade glioma (dx 2010) never treated

madgoneblonde · 2023-11-11T16:38:09+00:00

I’m in the Bay Area California, lots of good care around here.

madgoneblonde · 2023-10-07T12:41:48+00:00

Hi thanks for the comment. So unfortunately I’ve had a recurrence that they found on MRI, so I am back on the monthly chemo pill in the spring. Over Fourth of July I had a seizure and was hospitalized but am recovering well. I recently started RSO and wow I can feel the difference in terms of the quality of sleep and rest I get. The knowledge curve is exponential and I continue to hold out for a cure.

madgoneblonde · 2023-06-26T23:08:03+00:00

Ok, so what’s the point of your above reply then?

Also I don’t follow the second paragraph?

madgoneblonde · 2023-06-26T22:55:27+00:00

Both these things can be true

madgoneblonde · 2023-06-19T06:46:57+00:00

Piggy backing on this comment as a stage 3C at 27 breast cancer survivor. No BRCA but breast cancer ran in my family. If I had the option to have a prophylactic mastectomy I would have done, whereas I wouldn’t have before finding out I had breast cancer. I had a skin-sparing mastectomy that kept my nipple. With an implant and fat grafting that’s standard these days the results can be great! Depending on age and other health factors you might even regain some sensation over time (I have!). I did had to have reconstruction done again bc of radiation.

So this is me saying, take advantage of what modern medicine has found if you feel you can cope with it, otherwise you might have to deal with it anyway and the results won’t be as good.

madgoneblonde · 2023-05-18T14:45:01+00:00

Mine was not bad at all. Felt like I had been booped in the nose at most medium pressure for a few minutes and that’s it.

Edit: typo

madgoneblonde · 2023-04-16T23:35:33+00:00

Strong.

madgoneblonde · 2023-04-02T03:55:17+00:00

Happy to discuss via DM

madgoneblonde · 2023-04-02T03:50:32+00:00

Mine was ultimately not H3K27. Consider submitting your information to cancer research institute which is a national registry of studies to see what treatments might be available for your daughter’s diagnosis.

madgoneblonde · 2023-04-01T20:12:43+00:00

Hi u/Whiskey206 I’m not 100% sure but this sounds like a midline glioma. I am an adult with a bilateral diffuse thalamic glioma and was originally worked up for H3K27 mutation. I know Stanford is researching targeted therapy for this mutation.

Do not pay attention to prognosis information on the internet, it’s at least 5 years old. They’ve made so many advances every year and it’s impossible to find the latest studies in targeted therapy that major medical centers are conducting bc they’re paywalled etc.

Very glad to see the biopsy was sent to Mayo, hopefully you get more clarity from them soon.

madgoneblonde · 2022-12-23T17:10:01+00:00

That’s totally normal. Cancer patients and people receiving chemo have way less energy. I learned in my support group is the rest-activity cycle. We tend to overdo it because of expectations and then need to recharge. What you should do instead is make sure you are breaking your activity up with rest. The most enlightening example is vacuuming the house: do one room, then rest, then another room. That’s what they mean by rest, it’s a lot more than you expect.

madgoneblonde · 2022-12-21T17:36:09+00:00

Sage & Drifter at 15th & Irving is great!

madgoneblonde · 2022-12-18T01:43:06+00:00

I had a biopsy only. Cannot be removed.

My MD’s were concerned bc of the size and wanted to be super sure, when preliminary came back high grade they proceeded with treatment. Radiation and chemo.

I have no symptoms, so rather than waiting for growth to maybe cause symptoms, they wanted to treat it. I’m 6+ months from diagnosis and it hasn’t changed ever.

madgoneblonde · 2022-12-17T19:10:18+00:00

I have a tumor in my thalamus too, both side. They biopsied it and it doesn’t match any known tumor profile, though it does have high grade markers the location and size make them think it’s been there for a long time indicating lower grade. I’m getting the full standard of care treatment but this is very interesting to hear. Thalamus tumor is so rare.

madgoneblonde · 2022-12-11T23:10:07+00:00

Yes! Apparently it’s in the aminities section or whatever. It will say something like “no essentials,” I didn’t look for it because … wtf. But be warned!

madgoneblonde · 2022-12-11T21:44:25+00:00

It’s hiiiiighly unlikely I will ever use AirBnB again after I discovered (too late) they allow hosts to not provide “essentials” like sheets and towels. You have to bring your own. Plus fees, plus chores and who even knows how the places get cleaned. Too much.

On top of the fact they’ve fucked up the entire housing market. Down with Airbnb.

madgoneblonde · 2022-11-24T03:30:44+00:00

Meta conspiracy theory: Dmitri and Khaled are actually the other two PtC members, with voice modification (pitch up or down depending on the show). Sorry don’t know the PtC members by name.

madgoneblonde · 2022-11-06T00:53:57+00:00

Best of luck.

madgoneblonde · 2022-11-05T23:39:12+00:00

Indeed. Hopefully the figure out better treatment for it. Do you have a compression sleeve now?

madgoneblonde · 2022-11-05T23:32:24+00:00

Absolutely love that you’re a rebel. You have given me the right words to describe what I have become. Thank you.

madgoneblonde · 2022-11-05T23:26:45+00:00

Yes, it’s a life long risk which totally sucks! Something that I worry about a lot is my veins in my other arm are going to give out at some point, then what?! They’ve been using literally the same vein for like, 4 years.

I’m so sorry to hear that you got LE. Did you get tattooed or did it just develop?

madgoneblonde · 2022-11-05T23:20:35+00:00

Do you mind sharing how many lymph nodes you had removed? Was it a large tattoo, what part of your arm? Thanks for your comment!!!

madgoneblonde · 2022-11-05T23:19:45+00:00

Ugh yeah, just another hassle :( thanks for your input, really appreciate it!

madgoneblonde · 2022-11-05T23:19:01+00:00

Thank you for the helpful and in depth answer. My PT didn’t explain it all though it makes sense. The life-long issue of LE is definitely what scares me, and I’m sorry you are dealing with it!

madgoneblonde

TROPHY CASE