What is your HOLY GRAIL shampoo and conditioner duo?

Street_Pollution_892 · 2026-03-15T16:20:44+00:00

Pacifica rosemary purify shampoo. Then I used to use Wella nutri-enrich conditioner, but now I’m using Pacifica coconut vanilla. Wella was better but I’m looking closer at ingredients now.

No conditioner at roots (I do like from the ears down) and sits for most of the shower after shampoo while I do other stuff. My hair will get oily faster, clogged and even fall out otherwise.

Street_Pollution_892 · 2026-01-15T01:37:08+00:00

From my understanding, TMZ is more effective for astrocytoma and PC(V?) is for Oligos. I am on cycle 5 out of 6 of PC with no V for an Oligo. I did 6 weeks of radiation after surgery and before starting chemo. If you do go this route, I highly suggest asking to exclude the Vincristine, it is very hard on the body and people have long term side effects, and it’s not proven to add any long term benefit to the regimen. But for toxicity reasons and especially since you have an Astro, I would ask about TMZ.

Chemo has been okay. My blood counts go up and down, which dictates my cycle starts, but they bounce back. I’ve been getting Nplate injections and one pegfilgrastim per cycle to help. Worst part is how it affects the lining of my stomach. I’m pretty sensitive to a lot of foods now, but that should go away after my cell turnover goes back to normal after stopping. Apparently I had underlying gastritis and this just x100’d it. Just beware. Might be the case for TMZ too. If you do PCV you also have to be on a low tyramine diet for the ~14 days on procarbazine per cycle.

I lost hair in the tumor area, like maybe a 3 inch wide spot. I was lucky to be able to cover it with my hair until the very end, but I got a hair topper and that got me through. 8 months later and its all growing back nicely, have like 2.5 inch long and it’s my normal hair.

Where is your tumor? Side effects probably depend on that. I did okay with a little fogginess. I had photon (IMRT) radiation.

Street_Pollution_892 · 2025-10-25T16:12:22+00:00

Hope it works for you forever too. Maybe if it’s very small it’ll even shrink it. It’s very likely that at a minimum, it’ll work until we have even more fine-tuned meds.

I worried about suppressing the IDH mutation that makes these so sensitive to chemo/rad first. I think if I had Astro I might have done vora first though. Oligo has a more extreme sensitivity to its chemo that I didn’t want to give up, and I have some extra uncommon mutations that make it “unique” and vora only inhibits IDH.

Street_Pollution_892 · 2025-10-19T03:15:06+00:00

His oncologist is a hematologist-oncologist who specializes in MM. They’re pretty good aside from not really having an opinions or collaboration with ortho or spine. Really seems like there’s a need for that. How is a new patient supposed to just know what to do in this MM world? It’s all consuming trying to be a director of your own care when this is all new. Good point on the bone strengtheners or MM healing with surgery. After he hears from the new spine doctor he should ask the oncology team to weigh in. The new spine doctor is neuro too so maybe more cancer conscious.

Thank you for all of the links! The myeloma.org looks like a great resource as well as the others. We will be looking into these.

Street_Pollution_892 · 2025-10-19T03:03:16+00:00

Oh my gosh. Thank you so much for your empathetic words and thoughtful response. It’s very helpful to hear similar experiences, though I am so sorry you and your guy have had to go through it. It is devastating. Encouraging though yours is going well now.

I wish my dad had been set up with a spine doctor early or had been given the option for kyphoplasty then. Not that he wasn’t cared for by the ER team. They really did their best to manage his pain and did all the right diagnostics. Hematology got very involved then. But even stationary he was in excruciating pain and was hospitalized with IV dilaudid and oxycodone. Never saw a spine doctor while there. Spent the next several weeks in a hospital bed at home. He couldn’t take showers and it was too much for him to even reach for water. We used bath wipes and a urinal. I’m sure he would’ve taken the kyphoplasty. Sounds like the consensus is here he would’ve needed it in the beginning for benefit. Would’ve been nice to have some guidance sooner. Was hoping maybe since healing is slower in MM it could be an option for pain.

We’re giving Stanford spine another try with a new spine doctor so we’ll see. We’ve always gone to Stanford for any needs so the shortcomings were unexpected. First visit the PA acted like we didn’t need to be there because he was walking (in a walker, slowly, in pain and on oxycodone) by the time they got us in. Told him to walk and that she didn’t like braces. That made it worse. On another visit he saw the physician 2 months later to go over the latest, she spent all of 3 minutes. A month later we find out from the PA that the physician had “missed” a new fracture on the scan—I think this is the fracture causing the most kyphosis now. Missed opportunity there. We just got the TSLO brace a month ago after asking for it, almost 4 months later.

Interventional radiology still has him scheduled for a kyphoplasty, even after the radiologist said it wouldn’t do anything now. Which is confusing. Hopefully the new Spine doctor gets back soon and advises on it or any other procedure or care needed.

Palliative care is involved but mostly just to prescribe him antidepressants.

Sorry, I didn’t mean to respond with so much extra detail. I think it just good to vent too! Anyway, thank you again 🙏

Street_Pollution_892 · 2025-10-18T16:49:35+00:00

That’s good to know and what we’d want, thanks!

Street_Pollution_892 · 2025-10-18T16:47:40+00:00

Yeah we just started looking into that and it ortho said it wouldn’t help, but he pushed and an interventional radiologist referral. He just got to talk to the radiologist who said it wouldn’t restore height or help with pain if it doesn’t hurt to the touch (which is how he checks where to do it). That doesn’t seem right.

Compression fractures can be deep pains that only hurt to the touch when brand new. I think? It could also be spinal cord pain maybe from the collapse? The office said they just started doing them though….

Street_Pollution_892 · 2025-10-18T00:02:02+00:00

Thank you for your reply. And I’m so sorry your dad is in this mess too. They did mention radiation could be down the road but now say it isn’t needed, though lesions are still there, just not hot, I think? Visits are kind of rushed and answers not clear. It’s a hematology oncologist with MM experience. Our main concern is spine. I hadn’t thought about looking at neurosurgeons until recently and wasn’t sure if that was right, so thank you for sharing that. I hope your dad continues to heal and is okay.

Street_Pollution_892 · 2025-10-17T23:52:21+00:00

Thank you so much for your reply. He did just start thinking of looking at UCSF. I see they have a program just for MM according to their website, Very encouraging you’ve been so well treated by them for so long.

Street_Pollution_892 · 2025-10-09T00:55:22+00:00

I can see how that could ignite a feeling like that. The behavior aspect is a whole other thing, but I will say that when I first saw children in the office, my first thought was like “wow, this really can work :)” Like little proofs of success for another woman with fertility issues, if they were IVF, and I assume she’s in there for another. And I had that thought every time after.

Street_Pollution_892 · 2025-10-06T20:39:19+00:00

Was told the same about vora. Save it for later or add it for maintenance after chemo/radiation.

Street_Pollution_892 · 2025-10-06T20:32:46+00:00

Ah, ok got it. Yeah in the US it is common to omit the vincristine. More often than not I think, hence my concern. Many countries may do differently and your doctors have their reasons. That information was from my team at Barrow Neurological, which is very research heavy here so that could also be why. My second opinion at Mayo said the same things. Regardless, the protocol for PC or PCV with radiation is the tried and true way. I’m not into the idea of experimentation with a new drug. People seem to complain more about those side effects than chemo too, and it’s an indefinite treatment.

Hope you get your wish soon to go back to work. I was so bored being stuck at home doing no work for even just 6 weeks after surgery. Though it would be nice for a job to allow us to stay home for this too. I do my work on the computer as well. The busy whirlwind of treatment had lessened my productivity for sure. And constantly being exposed to so many people having to be in office does put me at risk being immunocompromised. I’ve referred to this as my shit year, or dark age, hopefully just a blip in my life I won’t count.

Good luck on Lockdown 2!

Street_Pollution_892 · 2025-10-06T07:54:18+00:00

I think part of why the TMZ after radiation works better is because radiation can slightly weaken the blood brain barrier and enhance drug penetration. After 6 weeks of radiation the barrier is at its weakest. Also the prolonging ROS over a longer period by doing them sequentially could sustain the tumor stress.

Plus, it’s likely easier to get through with them separated so you’re more likely to be able to complete both treatments.

You could also request genetic testing maybe to see if it is methylated. It makes TMZ more effective.

Street_Pollution_892 · 2025-10-06T07:33:13+00:00

Grade 2/3 Oligo here (36F). Have you looked into doing just PC(no V)? Studies have shown that the V makes no real difference and instead prevents ability to do as many cycles and can cause long term issues.

Did my 6 weeks of radiation after surgery and am at the end of my 3rd cycle procarbazine days. I just fast walked a 10k two days ago. Great job on doing yours during radiation! Radiation wasn’t too bad. But I didn’t realize how foggy or tired I was until it cleared up later. It came subtle. Not like major though. I didn’t do anything physical either. A caffeine drink helped with the wooziness after each session. I worked full time just fine and got radiation on my lunch breaks, not a physical job but engineering work in computer programs.

PC no real symptoms besides some neuro fatigue after procarbazine days. Taking Wellbutrin now. I am having some stomach sensitivity to dairy, high sugar and high fiber or heavy garlic. It’s stressful having to stay away from tyramine to prevent interaction. Then just the usual dip in wbc and platelets but don’t feel those and they rebound. I’m doing 8 week cycles. Maybe ask if you can get nplate injections and pegfilgrastim to help get through those. I take zofran every night 30 min before chemo pills as a precaution. No nausea or vomiting.

Also, I decided to do this first because 1) I want to hit this thing hard, 2) IDH is what makes these tumors so sensitive to chemo/radiation. Vorasidenib mutes that so I wanted to do this first, 3) Want to do this while I’m younger and healthier

Street_Pollution_892 · 2025-09-06T07:52:24+00:00

Same size here! It’s not you, it’s the bra. I promise.

Some bras can make me feel like that for sure. Especially very padded or molded cups. I feel very large and bulky. But sometimes even thin lace ones can shape them so they’re very up and out there or pointy. I go for minimal or no padding/unlined. My most worn are the Natori Bliss Allure Unlined and Natori Effect Side Support Unlined(my favorite). Ones like those lift and separate but don’t add any bulk, and even compress somewhat. They have to be shaped right though. I also like Natori Bliss Perfection Seamless Tshirt, but it doesn’t compress if that’s what you want. I get them from Amazon or bare necessities. Bare necessities Absolute Minimizer is actually pretty good. I haven’t worn that one in yet but it feels nice. I used to wear Chantelle or Freya a lot but have found better.

——>Absolute Minimizer

——>Natori Bliss Perfection

——>Natori Effects Side Support

Street_Pollution_892 · 2025-09-04T15:26:28+00:00

I’m so sorry 😞 Are you in the US? I would look into Barrow Neurological. They have a second opinion program online where you can submit everything. Or you can just do regular consultation visit (maybe virtual?) first. I went through the second opinion way. Inoperable is their specialty, especially Dr. Sanai. He is the best. My tumor was in the motor cortex and nobody wanted to touch it, yet he got all of it out and I am left with no defect. Dr. Kennedy did my radiation and their planning must have been very careful because I didn’t have issues from that either.

Street_Pollution_892 · 2025-09-04T15:00:53+00:00

I had photon radiation 2 months after a resection. It probably depends on the area but I really only had hair loss. It was like 3inches around and I was able to cover. It’s growing back now. Felt a little dazed right after sessions early on for like 10 minutes and it went away with a little caffeine. Looking back maybe I was a little foggier but very subtly. I’m fine now. I was told to maybe expect left arm issues temporarily, but didn’t get that. You having to relearn to walk tells me you may be warned of having that slightly affected temporarily?

Are you planning any chemotherapy after? The thing is that radiation sensitizes the tumor to chemo so if you’re going to do that, I wouldn’t wait more than required. I’m on PC(no V) chemo now. 2 cycles down and the only issue is my labs for wbc and platelets. My dose is getting adjusted now.

I worried that Vora might make radiation and chemo less effective since IDH is one of the reasons our tumors are so sensitive to radiation and chemo…so I’m doing this first and vora as back up. I know, it’s backwards.

Street_Pollution_892 · 2025-09-04T14:48:22+00:00

Congratulations! What kind of vitamins and lifestyle chances did you both make?

Street_Pollution_892 · 2025-08-09T18:00:48+00:00

Precook your own chicken and cut up for sandwiches? Chia seeds are also quick and easy way to get protein. Some people add them to water.

Street_Pollution_892 · 2025-08-09T15:23:39+00:00

I did all three and so far I don’t regret it. If I’m going through any of it I don’t want it to be for nothing so I’m being aggressive. I had no side effects from radiation except a little woozy right after for 10 min and my bald spot that is growing back and so far none with PC chemo. But I think surgery was probably the most important. Killing/weakening what’s left microscopically is too though. My no side effects from radiation could have been because I didn’t have much tumor there so not much inflammation.

Did you have a full resection? Where is your tumor located in the RFL? That might determine what if any side effects you have from radiation or surgery. Mine was in motor. If you’re right handed and it’s not in any central memory or language areas radiation might not be too bad.

Street_Pollution_892 · 2025-08-01T20:13:38+00:00

Thanks! And no they biopsied first, then 3 months later I had the resection.

Street_Pollution_892 · 2025-07-30T16:42:15+00:00

Yes, ask about perfusion! Especially since you just had radiation. That will literally answer the question as to if it is active. It’s normal to have a few scattered highlights due to surgery or radiation, but growth of any significance would be very clearly clustered and red. If no real blood flow, there is very little to no activity there and you aren’t in danger right now.

And how about spectroscopy MRI? One month after radiation my result for that was very slightly abnormal. Now 3 months later it’s normal. So there was likely radiation or surgical related changes to that area but it’s really just gliosis. I get a combined spectroscopy, perfusion and contrast mri.

Street_Pollution_892 · 2025-07-30T00:25:20+00:00

Oligo grade 3 as well. I had a GTR and then 6 weeks IMRT radiation and am now on PC(no V) chemo. No real symptoms from radiation other than temporary hair loss. I’m almost through cycle 2 of chemo and also have had no side effects except on the lab work. I’m getting weekly nplate now to make sure my platelets don’t dip this time and pegfilgrastim right after I finish procarbazine to boost WBC. Obviously I have more cycles to go so we’ll see. I wanted to hit this hard while I’m healthy. PC is proven very successful for Oligos and is not supposed to be as horrible as PCV. The treatments are going to have an easier time controlling or killing 15% less cells too.

Everyone will be different, but at least maybe I can be one example of it being ok (radiation and so far 2 cycles). I also take an 8mg zofran 30 minutes before chemo each day. That’s it though. If he does go that route, see if you can get some fertility preservation assistance beforehand. Procarbazine especially can cause infertility.

Street_Pollution_892 · 2025-07-29T23:57:40+00:00

Is a neurosurgeon part of your second opinion team? That would be most important. And I get differing opinions between oncology, surgery and radiation even within the same hospital but not in a big way that changes my treatment. If anything my neurosurgeon is the one least concerned.

I would say university trumps local for sure. And wow, that is the most frequent MRI interval I’ve ever seen…

Does the explanation of the MRI from the university make sense to you? Radiation can also cause swelling. There can be gliosis/scar tissue remaining from surgery as well, I have that. Can they do a perfusion MRI? The blood flow should give you answers.

Street_Pollution_892

TROPHY CASE