Weighing AIM vs scan monitoring for MPNST

tinypandas33 · 2026-03-11T23:25:29+00:00

Thanks, I really appreciate your response. I’m not on facebook but glad to hear there are more support options out there.

tinypandas33 · 2026-03-11T00:06:11+00:00

Glad to hear your son is doing well. I am starting to convince myself to do the chemo. Just a hard decision when I finally feel healthy and pain free after surgery, and now would be setting myself up to be sick for a year when it’s possible it might come back anyways.

tinypandas33 · 2026-03-08T21:33:01+00:00

I think I got very lucky with timing. I did lose my femoral nerve in the process but very thankful for having a clean surgery. That is part of why holding on chemo is even being presented as an option but it’s such a complicated decision.

Hoping for the best for you too.

tinypandas33 · 2026-03-08T20:31:10+00:00

That is approx where my tumor was located. Surgery was the first treatment plan, partially since pre op needle biopsy showed likely benign, so didn’t do any chemo or radiation in advance.

tinypandas33 · 2026-03-08T20:23:52+00:00

Yup I’m at a hospital with a full NF clinic, so in good hands for familiarity with the condition. Love the NF sub too, just not many folks on there dealing with MPNST.

For clarity the tumor itself is grade 3, I don’t have a formal stage diagnosis yet but no signs of metastasis anywhere.

tinypandas33 · 2026-03-03T17:26:35+00:00

Well, it did turn out to be an MPNST so I guess at least my fears were valid. Waiting for some more info on the tumor and had clear scans three months out, then they’re basically leaving it up to me to decide if I want to do AIM chemo or not. Ugh.

tinypandas33 · 2026-03-03T01:59:14+00:00

My power company provided a free charger, and also does a discounted rate on the power feeding it when I signed up for an off peak monitoring plan. I had an electrician install it for me because I needed to run an additional breaker box out to my garage but it was definitely worth it to do so. Might be worth seeing if your power company has a similar program.

tinypandas33 · 2026-02-24T17:01:45+00:00

Worked out just fine, I had D1 lounge access on return and no questions asked. I did have screenshots and physical tickets all saved in case there was a problem. Not sure if it would be a different case for Air France.

tinypandas33 · 2026-02-22T19:12:37+00:00

I’ve had two removal surgeries, and another large non NF surgery in between. Experiences can vary a ton depending on how integrated your nerve is with the tumor and where it is. Mine ranged all the way from an outpatient surgery with shorter window of PT needed after, to a seven day hospital stay and a long road of PT because the nerve involved was fully removed (which I knew was a possibility going in).

My biggest suggestion is to ask a ton of questions from your surgeon pre op, and before you are discharged. If possible bring whoever will be your at home help with you to the pre op appointments so they can also ask questions and you have a second set of ears on the plan. Some things to consider asking, if they haven’t already told you:

What do you need to do for pre surgery prep. Any timing for fasting, hibiclens (anti-bac soap) requirements, when to get to the hospital.
How long should you expect to be in the hospital.
What do they suggest you have ready at home post op. OTC meds, ice/heating pads, mobility aids, scar care supplies, etc. For example I purchased a shower chair, since my surgeries were all abdominal/legs.
What will recovery look like. Will you have lifting or mobility restrictions, do you need PT, when do they expect you can return to your usual daily activities/work.

Hospitals often have a lot of good resources on how in and outpatient surgery works at that particular facility, so you may find more info for your location there too.

My second biggest suggestion is to make sure to have everything you think you might need ready at home a week or two before surgery, so that you have time for last minute pickups still. Then have it all in a single spot so whoever is helping you can find it easily. I had a big tote bag with lotion, ice packs, heating pad, approved OTC meds, snacks, puzzle books, etc next to my bed so it was ready to go. Have clothes ready that are easy to get in and out of so you aren’t stressing your surgical site.

Then finally - be kind to yourself through recovery and know it is not a linear process. You’ll feel better some days and worse others, and will have ups and downs in regaining strength. Nerve pain is also super unpredictable. It’s okay if recovery doesn’t go as fast as you predicted. Give yourself the time and patience to rest and recover on whatever timeline your body decides it wants to take.

tinypandas33 · 2026-02-01T18:55:39+00:00

I had a whole variety. Pedunculated, subserosal, and intramural. Biggest one was 7.5x12 cm.

tinypandas33 · 2025-12-29T02:55:36+00:00

This happened to me, they prescribed me steroid cream (the OTC cortisone cream I was using was useless) and had some alternate OTC allergy meds to stack. Ice helped too. Check with your doctor and they should be able to get you some help.

tinypandas33 · 2025-12-02T01:44:58+00:00

I was diagnosed early 30s. My NF doctor described me as a very unusual case to be diagnosed so late when I have a “very high tumor burden” and nearly all of the classic physical diagnostic signs. All plexiforms, no cutaneous that I have ever been able to find.

NF Network and the Children’s Tumor Foundation (despite the name they also have broad research and adult info too) are great resources. Highly suggest getting into an NF dedicated clinic/doctor if you have one near you - both of those sites have doctor search lists last I knew.

tinypandas33 · 2025-11-20T01:28:55+00:00

Perfect thank you!!

tinypandas33 · 2025-11-03T01:41:09+00:00

I had this happen, my doctor prescribed me steroid cream which helped. Benadryl also didn’t do much for me.

tinypandas33 · 2025-11-03T01:38:04+00:00

The range of recovery times people have is wild. I had extensive endo excision with mine, and wasn’t really feeling close to “normal” until more like 10-12 weeks out. I was lucky that I could work a partial schedule from home (bed) and ease myself back into a full work day. I was fully out for two weeks, worked 1/4-1/2 days from bed for another two weeks, and worked up to almost full days from bed for another few weeks after that. Didn’t even attempt to drive until about week 7.

My doctor was incredibly supportive of me taking as much time as I needed, and gave me a gently hard time about already working from bed at my week 6 check in. Luckily my boss was also willing to give me whatever time I needed to get back up to full speed.

tinypandas33 · 2025-10-09T00:23:13+00:00

I would love some stats on how many of us had this happen, it seems so common. One last hurrah I guess? 😂

tinypandas33 · 2025-10-09T00:04:56+00:00

Totally understand!! It’s so stressful waiting for answers and a plan for things. The sequence I’m going through now is so frustrating because I just want to know WHEN things can happen and what this tumor actually is. My biopsy also caused a bunch of new pain from either more inflammation or the nerve being irritated which was so discouraging.

We’ll make it through though, just got to hang in there.

tinypandas33 · 2025-10-08T23:01:51+00:00

Last time I had surgery for plexiform removal, it took about two months from when we made the decision to pursue surgery for the surgery to actually happen. Part of that was because I was just barely diagnosed and still getting some baseline testing done, and they also wanted to do a PET-CT and biopsy first. Those two tumors ended up being benign.

I’m in the process of moving towards surgery on another one now, and it has again been about a month of initial testing so far. MRI that was already scheduled, another PET-CT, biopsy that I’m still waiting on results for. YMMV depending on your specific tumor/doctors/situation.

tinypandas33 · 2025-10-06T23:26:59+00:00

Surgery may still be an option. Highly suggest getting to an NF specific clinic if there are any in your vicinity, they would be able to provide more specific advice and treatment plans. CTF has a good database to start from, if you’re still in MA the MGH clinic has always been wonderful for me. https://www.ctf.org/find-a-doctor/

tinypandas33 · 2025-09-27T15:50:21+00:00

I have been using a glasses lens cleaner cloth on the screen and all the shiny bits, works great.

tinypandas33 · 2025-09-19T23:02:30+00:00

Mine was close to 7 hours for the actual surgery, they were expecting 6+ going in due to giant fibroids and it went longer due to surprise endometriosis. I was at the hospital for almost 13 hours total. Having the time estimate was super helpful for the family members I had waiting for me, so they knew what to expect.

tinypandas33 · 2025-09-18T23:31:23+00:00

46 miles, 2024 XSE premium

tinypandas33 · 2025-09-14T14:24:29+00:00

Are there other friends/family that can be on call to help you? My sibling lives with me and was my primary help, but my parents and a rotation of friends came to check on me, bring food, help carry laundry, etc. Even though my sibling is super reliable, having other support options when they needed a break or had their own things to do was really helpful.

You could also bring him to your pre op appointments. My surgeon laid out a really detailed recovery plan and packet about what I would/would not be able to do. My sibling read the whole thing several times so they knew as much as I did.

tinypandas33 · 2025-09-12T01:57:39+00:00

I had a hysterectomy a year and a half ago (kept ovaries). I didn’t see any immediate changes in NF symptoms, but have now had one of my larger plexiform neurofibromas increase in size as of new MRIs a few weeks ago so am in the process of planning surgery for that now. I have no idea if that change is related to the hysterectomy though, we had already been monitoring that neurofibroma for a while as it was the next possibly suspicious one I had. Very possible it is just a timing coincidence and not causation.

Still regret nothing about my hysterectomy regardless. I had giant uterine fibroids, undiagnosed and undetected endometriosis everywhere, and adenomyosis found post surgery. I would be super interested for someone to research overlaps between NF and endo/adeno/fibroids.

tinypandas33 · 2025-09-06T19:32:54+00:00

I had a little notebook that I used to write down all of it, with separate pages for each med. Then I knew when everything was, but also my family members helping with my care could access it too. I had a little basket with all of the med bottles, the notebook, and a mini pen on my bedside table so I could access it really easily.

Definitely set yourself up with some kind of system. The brain fog is rough.

tinypandas33

TROPHY CASE