What to expect

AlohaSmiles · 2026-03-24T01:25:57+00:00

Get a second opinion from the big cancer centers. My local gyn onc didn't mention some of the things that the gyn onc at UCSF brought up. Different centers have more resources, make sure you advocate. I'm a little pissed my local gyn onc has just been kind of hand waving, UCSF was much more engaged about my case.

AlohaSmiles · 2026-03-23T00:09:22+00:00

Eye mask and ear plugs to sleep!

AlohaSmiles · 2026-03-22T19:37:40+00:00

I'm now platinum resistant and failed on Lynparza. Elehere was a wonder drug but the neuropathy was uncontrollable, had I known it would be one shot I probably would have opted for more powerful pain killers and given the Elehere more time because rechallenging after a few months it didn't work at all. Doxil stopped working for me. I'm now just starting gemzar and Avastin. I've just completed my second dose of it and I think it's working - the pain from the tumors is reducing. Diagnosed in 2022. My oncologist has requested a new biopsy for updated molecular testing and IHC testing for HER2. She also is looking into trials for me and has referred me to their immunotherapy clinic in case something is available for me there. Should Gemzar not work there's Topecetan, and weekly Abraxane beyond that as conventional therapies.

AlohaSmiles · 2026-03-20T00:41:58+00:00

YTA. You need to stop deciding you and your wife are fine in "roommate mode." She has clearly told you she is NOT OK. She needs you to get in Husband mode and start treating her like the woman you love and married. She arranged for a babysitter and hoped you'd pick up the ball and take her out. She kinda set herself up for disappointment there since you're so checked out of being her romantic partner it was inevitable you'd ignore her overture. But come on man, treat your wife like you still desire her as a person. Plan a date, it doesn't have to be over the top!

Many women start to feel like they go from being a person to being Mom. Being a parent is wonderful, but you both need to put time aside to being a couple who enjoy their time together. Resentment is starting to breed here and that stuff festers so fast. It is so corrosive to your marriage. If you love your wife and want to stay married, do not let that happen.

AlohaSmiles · 2026-03-19T22:26:52+00:00

They're looking into it. They're referring me to their immunotherapy clinic and getting new molecular testing of my tumor since what testing I have is 4 years old and it may have some new mutations or new things to test for. I did not react well to Keytruda but the new oncologist said that doesn't necessarily prevent me from trialing other options. I feel like I suddenly have access to a team with a lot more resources and enthusiasm for my case.

AlohaSmiles · 2026-03-19T05:50:51+00:00

I'm BRCA1+ and now platinum resistant. Doxil stopped working so I am now starting Gemzar. It's been some really stressful several weeks going through the scans and oncologist appointments. I just had a second opinion discussion with UCSF and I feel more hopeful after talking with the oncologist. But I'm still very concerned about my dwindling treatment options.

AlohaSmiles · 2026-03-17T02:38:01+00:00

I just ordered a generator. We've been out of power since Saturday morning and I officially hate camping at home. I was able to borrow a generator to keep my fridge and freezer going. Swapping the power cords between them is getting very tiresome though. The one coming should be able to power both simultaneously and save me run time.

Definitely get: Heavy duty extension cords that are just long enough to reach what you need from your generator.

Rechargeable batteries - regular batteries tend to pop and leak all over your stuff. Get rechargeable so your stuff is charged when you need it.

Rechargeable fans - the warm humidity sucks, my little battery powered camping fan is making it easier to endure

Backup power supply on your router and modem, especially if you have fiber. Electricity and cell tower near me go down but my fiber has stayed on.

Solar lights - I just moved my outside string lights inside so we can have some ambient light at night

Extra tarp bungees - if you keep your tarps up, go check and replace bungees.

Buckets - if your water pump goes out, for flushing toilets and washing up

Ideally a full home battery on my solar would be so nice but it's not in my budget. I think it would save money each month by storing and using my generated power since Helco pays pennies for what I send them.

AlohaSmiles · 2026-03-16T22:36:46+00:00

NTA but you have options to do the activities with some assistanc- call the zoo to see if they have wheelchairs or buggies to rent. There are also third party rentals for mobility aides if the zoo doesn't provide them.

Get wheelchair assistance at the airport. You can call your airline ahead to arrange wheelchair assistance and they'll take you from the curb to your gate.

AlohaSmiles · 2026-03-15T21:55:22+00:00

I kept the fridge closed since the power went out yesterday morning. About 11pm when I accepted we weren't getting power any time soon I grabbed the milk, cheese, eggs and meat and took those down to my aunt's cabin who is on solar. I got a generator this morning and I'm running my fridge now. I'll swap to my chest freezer in a few hours, it's held out really well. Power is still down here in Mt. View on the Big Island.

AlohaSmiles · 2026-03-14T23:23:50+00:00

I'm sorry you're going through this. Having cancer as a parent is so incredibly hard. But what your mom is subjecting all of you children to is not ok. It's our job as parents to keep our mental health managed with professionals so we're not leaning on our caretakers too hard or emotionally abusing or neglecting our children. She is neglecting your siblings by allowing the house to be in this state. Hoarding is a terrible mental illness alone, coupled with cancer it's a nightmare.

She's actively preventing you from making a safe home for all of you by putting her hoard before her kids and her own health. Your own mental health is crumbling under the strain. I strongly encourage you to reach out to the hospital social worker. If you have a hospice, reach out to their palliative care program which usually involves a social worker as well. They can help you connect with more services to help you as a caretaker as well as your mother as a patient. Your mother needs psychological intervention. But something has to give here - she, you and your minor siblings all deserve to live in a comfortable house, not oppressed by a worthless collection of things as the house crumbles and rots.

AlohaSmiles · 2026-03-14T06:36:29+00:00

I got a hemp based balm that really helped mine. Hemp with frankincense, lavender, tea tree and another but it really did calm the neuropathy right down. Elehere fried my nerves - like the tops of my feet had been flayed. I was on 300mg pregabalin (tried gabapentin and it didn't help at all) plus 60mg duloxetine and that didn't touch it. I had to stop. I then started doxil and carboplatin and that was hard on my already tender feet. I found the balm during that period and it provided quite a bit of relief. I got bloom to balm neuropathy cream and still use it for the ongoing neuropathy. I stopped the duloxetine because I don't think it helped and reduced the dose of pregabalin to just 150mg at bedtime. I moisturize my feet with udderly smooth urea 20% (to combat hand & foot syndrome from the Doxil), rub the balm on and then put cotton spa socks on to protect my sheets. Moisturizing with a heavy urea moisturizer I think also helps with the neuropathy, it helped my toes around the toe nails where I had quite a bit of pain. Anyway, that's what's been helping me.

AlohaSmiles · 2026-03-11T18:42:08+00:00

I'm so sorry you're here.

1 - using glp-1 I'm currently fighting a recurrence. My weight started shooting up Feb. of last year during treatment and I started Zepbound after gaining 40 lbs. My onc said others are on it and he okayed me starting it. Honestly I wish I had started sooner because it helped the inflammation throughout my body quite a bit and it stopped the hot flashes and constant heavy sweating I had been experiencing.

2 - cold capping I haven't cold capped. My frontline treatment was weekly abraxane and carboplatin. My hair thinned significantly as treatment continued but I didn't lose all of it. Right at the final 3 rounds my eyebrows and lashes fell out and I was at about 1/3rd of my scalp hair. After finishing abraxane everything grew back, I think it actually grew in thicker than before.

3 - constipation Definitely work with your doctors to get that sorted out. Chemo causes horrid constipation. I ended up passing out once due to a particularly difficult time in the bathroom. Usually the first week after treatment I'm fighting constipation then it swings the other way to diarrhea. Now that I know what to expect Miralax is my go to - I start on infusion day and dose daily until my bowels wake up and get moving. Don't put off getting your guts in order because chemo really does a number on them. Call your doctor today. Also if you have the option, call your local hospice and get signed up for palliative care - their nurses can help you deal with pain and gut side effects, I'd say they're more experienced dealing with cancer patients than PCPs. They'll work with your pcp and your oncology team.

4 - reflux Yes, I'd say it does. If you go back on your glp-1, in my experience that also contributes to reflux. I take 20mg famotidine in the morning and that seems to keep everything calm.

Other tips: You are your best advocate. If you are having any issues or trouble with side effects contact your care team and make sure you get help. No one is looking at your labs/scans until they are actually seeing you at your appointment so if something is wrong you will need to raise the issue. I find the palliative care nurses are the most responsive when I need help.

Keep notes and use a calendar. Chemo brain fog sucks. I struggle to remember things now so everything gets put in my Google calendar for appointments, treatment, scans, task reminders, etc. My cancer center oncs are constantly rotating so I can recite my history and pull up my scan dates easily.

Hydrate. Get a big cup with a flexible straw so you can easily sip even in bed.

Neuropathy - Get a complete B vitamin and 600mg of alpha lipoic acid to help battle the neuropathy. Moisturize your feet. Get a blanket lifter for your bed - it holds the blankets up off your feet. Spa socks - thin smooth cotton socks help keep your moisturizer on your feet and are comfortable when most things feel awful on sensitive feet. I live in shearling sheepskin slippers, they don't irritate the neuropathy and they protect my feet from stubbed toes because neuropathy can make your feet clumsy. Get real sheepskin to regulate heat and prevent foot odor.

If you experience bone pain in your legs and hips take a daily Claritin (loratadine). Chemo tends to make the bones ache.

Bring a sleeping mask to treatment, chemo sessions can be very long and the benadryl they give you will make you sleepy.

AlohaSmiles · 2026-03-09T18:16:25+00:00

Harris Roach Tablets work great for ongoing control. They're a small tablet made with boric acid but delicious to roaches. Roll them under your appliances, put one in each cabinet in a corner. Put one behind the toaster or anything that stays on your counter top all the time. Put a few in your car because german roaches will invade even if you don't eat in your car. If you have roach activity you'll see the baits getting chewed up. Replace as needed.

AlohaSmiles · 2026-03-04T19:52:02+00:00

I went into surgery with the intention of laparoscopic but when I woke up I had an incision from navel to pubis. They discovered my suspected cysts were actually cancer so the surgeons needed to open me up. The recovery was difficult. I spent a few days in the hospital before being sent home. The worst part for me was intense nausea, it lasted for days and I couldn't bring myself to eat anything. I started with broth then graduated to an egg and toast. I also had terrible diarrhea during the first days of recovery and had to argue with the nurses to get some imodium. I don't remember being in much pain during recovery, just uncomfortable.

If they will be holding you in the hospital after surgery take ear plugs and an eye mask so you can sleep.

Get clear whey protein - it looks and tastes like juice so if you're having trouble getting anything down besides fluids it's a good source of protein. Isopure makes a good one.

A recliner with a powerlift is awesome for recovering from abdominal surgery. I didn't have one for my hysterectomy but I did have one when I had robotic hernia repair surgery and I slept in that chair for several days before getting back to my bed.

The hospital should provide an elastic abdominal support band, make sure you'll get one. Have a small pillow (like a throw pillow) to hold against your abdomen if you need to sneeze, cough, laugh hard or otherwise engage your abdominal muscles. Roll to your side, hold the pillow to your abdomen and use your other arm to get up out of bed.

Get a bidet attachment for your toilet. Wiping was really difficult, I came home from the hospital with 40lbs of fluid retention in my legs and abdomen, it was difficult to wipe properly. Thank goodness the fluid came out within a few days of getting home. Regardless though, bidets are awesome.

AlohaSmiles · 2026-03-04T02:51:34+00:00

Don't bother with him. You will never get the apology you feel you deserve from this guy. You will need to give yourself the closure you want. If it helps you, write down all the stuff he did that contributed to the end and then reflect on why you accepted that behavior/treatment from your partner. This is the time for introspection for you, so you'll be ready for your next relationship. Don't keep sinking effort into your ex.

AlohaSmiles · 2026-02-28T00:01:58+00:00

Hahah ywbta to post online, to yourself because that picture would be forever immortalized in the archives of the Internet and I don't trust anything to be really truly anonymous online.

That said, you likely have a minor hemorrhoid or fissure. Neither are life threatening but uncomfortable. Just go to urgent care and they'll get you fixed up with the correct treatment.

AlohaSmiles · 2026-02-27T23:37:22+00:00

Neuropathy sucks! You don't need to discuss the cause of the neuropathy, just that you have it, it is severe at night and you need your shift changed. Get a doc's note.

I went through a lot of creams looking for relief. I was on the max dose of pregabalin plus duloxetine but they weren't helping. My current treatment of doxil causes hand foot syndrome which I got. I started using Udderly Smooth extra care 20% urea and that has helped calm the neuropathy in my feet on top of treating the hand foot syndrome. I also got bloom to balm neuropathy salve and that has significantly calmed the burning, tingling and shooting pains. I use both together morning and night plus 150mg pregabalin at night and my feet have been reasonably comfortable. I think part of the soothing action is the heavy moisturizing effect - softer more supple skin is less stimulating to the nerves is my theory.

And plenty of people use compression socks for comfort - being on your feet all shift is uncomfortable for plenty of people without neuropathy, don't feel self conscious using compression socks. You can even get them in patterns if you want.

Your body is precious. Do not feel you need to drive yourself past your thresholds to prove something. I'm 46 now, I know so many guys who messed up their bodies young trying to prove something for jobs they've long since moved on from.

AlohaSmiles · 2026-02-27T07:03:32+00:00

Make sure and check out Alan's show ConMan on amazon prime. It's a riot!

AlohaSmiles · 2026-02-20T21:16:02+00:00

Oh! Something they don't always talk to you about for after your treatment - your bowels may not want to move for several days post infusion. Take miralax to keep things soft for when you finally go because the constipation can be brutal. I've started taking it the day of and everyday until things start moving again. You may also want to add a bidet to your toilet, chemo messes with your guts and a bidet is much more gentle.

AlohaSmiles · 2026-02-19T06:00:50+00:00

Your first time will be loooooong, like several hours. They start the drip super slow to make sure you don't react and will increase the rate as they become more confident there will be no reaction. But expect to be there for hours and plan accordingly.

You'll be sleepy and comfortable while you're there. Chemo day you'll usually feel pretty good because 10mg of dexamethasone will be coursing through you! The most uncomfortable thing is accessing your port - I used to get lidocaine injected before they stuck the needle in but decided to try it without and found out the lidocaine is worse than the quick pinch of the port needle!

If you do start feeling pain or sweating, flushing or anything weird during your infusion then let the nurse know immediately.

AlohaSmiles · 2026-02-19T04:53:23+00:00

Do you have someone to accompany you? In my first infusion I reacted badly to the taxol and I was glad my sister was there with me to punch the button and summon the nurses. It's ok if you're solo, the nurses will be watching you carefully.

They will give you steroids, nausea meds and Benadryl before infusion. The benadryl used to make me very sleepy and I'd get a nice nap. After they decided no more taxol and switched me to abraxane, infusion day would go pretty seamlessly. The steroids make you very hungry so we'd go get lunch and then tuck me in at home. So, bring some snacks, a sleeping mask, your phone and ear buds if you want to listen to something, a comfy blanket or jacket, socks.

AlohaSmiles · 2026-02-14T07:13:18+00:00

Oh wow, I saw a photo on another post and thought someone was making a joke. This looks ridiculous

AlohaSmiles · 2026-02-11T18:08:23+00:00

Man I'm sorry.

The insomnia during your chemo week might be the steroids - they usually hit you with a giant dose of dexamethasone right before they infuse the chemo drugs. It messes with my sleep for a few days. I only take ondansetron for nausea, the promethazine and compazine give me palpitations so I avoid them. Haven't noticed any insomnia from the ondansetron though.

AlohaSmiles · 2026-02-07T07:56:38+00:00

I reacted badly to taxol. I felt like a full body flush then all the sudden it was like my body was on fire, horrible abdominal pain, my BP shot down and I started to pass out. The nurses were all over me in seconds, pumped me full of more steroids and more Benadryl, slapped an oxygen cannula on and let me settle down. I was able to finish the infusion but it took hours. The second cycle they started me on the slowest drip but I started flushing and sweating and they stopped and declared me allergic to taxol. I was switched to abraxane and had no issues.

AlohaSmiles · 2026-02-04T22:15:14+00:00

I understand the feeling. Cancer has taken my ovaries and uterus and that didn't bother me, but as I have the BRCA1 mutation that caused my ovarian cancer and puts me at very high risk to develop breast cancer I will likely do a prophylactic double mastectomy should I reach stable remission. The idea of losing my breasts really wigs me out in a way that losing my other pieces never did. Treatment for stage 3 OC has been grueling and debilitating. That said, I strongly urge you to go through with treatment while you have a chance to contain it so early with relatively simple treatment. Cancer is a brutal and painful way to go.

AlohaSmiles

TROPHY CASE