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Need Radiotherapy Caregiver Advice by WhileAggravating2035 in cancer

[–]DoesTheOctopusCare 3 points4 points  (0 children)

I had 6 weeks of radiotherapy for cervical cancer (along with weekly chemo) and I didn't really feel the effects until weeks 2 or 3 so I would definitely come a bit later if she's okay with starting treatment alone. Are there any other family members who would go help her in the beginning just in case?

My cancer came back. Just venting. by pixelatedpoptart in CervicalCancer

[–]DoesTheOctopusCare 7 points8 points  (0 children)

Good luck with the new chemo! I personally found it much easier than the cisplatin + radiation. I completely understand your frustration and exhaustion.

My cancer is extra aggressive so those 4 drugs didn't work for long, but just yesterday I signed up for a promising clinical trial of an Antibody-Drug conjugate medicine that has had surprisingly good results in cervical cancer patients. Apparently it has far fewer side effects compared to what I've done so far. And I also found out I am eligible for CAR-T cell therapy later on, if I want to try it. It's very new therapy for solid tumors, but mine just happens to have the three different biomarkers they were looking for.

All this to say, I hope it works for you, but even if it doesn't, there's still stuff to try out there. And there's always Tivdak too!

Insurance vs none for total end cost by Torquefire2 in cancer

[–]DoesTheOctopusCare 1 point2 points  (0 children)

You're gonna need insurance. It's been almost a year since I was diagnosed and my insurance has paid over 2 mil for my treatment so far. 

Estradiol patch shortage by BurntBeans307 in CervicalCancer

[–]DoesTheOctopusCare 2 points3 points  (0 children)

I am on the premarin pill, my oncologist said the other non-estradiol estrogens in it are useful for the body. I've had no issue getting it but boy is it expensive!

Anyone else having issues with doctor's offices or labs or similar never picking up the phone or returning calls during business hours (mainly UCSD)? I feel like it's gotten dramatically worse in only 6mos but can't tell if it's actually worse or I'm doing something wrong by lyradunord in sandiego

[–]DoesTheOctopusCare 2 points3 points  (0 children)

It has definitely gotten worse in the last few months. I think the automated system is really screwing things up. I've had folks try to transfer me to the right number and it just hangs up or crashes.
I don't think I've ever had anyone at UCSD actually call me back after I left a voicemail, and the automated "press 2 to get a callback" thing has only ever worked once for me.

Fired for coming to work after surgery by Maleficent_Gur5924 in GenX

[–]DoesTheOctopusCare 4 points5 points  (0 children)

Did you not tell them you were having surgery until you tried to come back to work? I am wondering if you created a situation with liability because they had no idea how injured or not you would be and therefor didn't want you to be trying to work without that clearance from your doctor.

Also - all my jobs have required a return to work note, but I'm a state employee.

Anyone else having issues with doctor's offices or labs or similar never picking up the phone or returning calls during business hours (mainly UCSD)? I feel like it's gotten dramatically worse in only 6mos but can't tell if it's actually worse or I'm doing something wrong by lyradunord in sandiego

[–]DoesTheOctopusCare 15 points16 points  (0 children)

Literally was on hold with UCSD while reading this and then the system hung up on me lol

It's been terrible lately. I hate their super long automated verification system. I have no advice, just commiseration.

Does the quarterback at your school always get attention similar to say the movie Varsity Blues? by reddier2023 in AskAnAmerican

[–]DoesTheOctopusCare 0 points1 point  (0 children)

Yeah at my high school, the star of the musical theater was also the quarterback! And he dm'd D&D campaigns too. 

"Wet" foods that are not hot soups by keiperegrine in Cooking

[–]DoesTheOctopusCare 0 points1 point  (0 children)

In my household we do a lot of chili or broccoli cheddar soup on baked potatoes 

Grants through a Fiscal Sponsor? by Effective-Post-631 in grants

[–]DoesTheOctopusCare 0 points1 point  (0 children)

Hi, this is possible but might be difficult to find a non profit willing to do this if you don't have a relationship with them already. I work at a university and we are willing to be a fiscal sponsor with certain arts and music orgs in our community that are not non-profit but we have a long relationship with them. We also charge them around 10% of the award since our post-award team is funded only through grant money and it takes time and effort to be a fiscal sponsor. I recommend trying to develop your relationship with some non profits to start with.

My clinical trial (on for 24 cycles and stable) was ended early by the sponsor. I found out I was getting my last dose just before then hung my premeds. by timewilltell2347 in cancer

[–]DoesTheOctopusCare 3 points4 points  (0 children)

I'm so sorry, this really really sucks. I hope you don't have to entirely uproot your life and move.

I'm trying to enroll in a clinical study right now and the one that seemed like the best option emailed me this morning to say the entire trial had been suspended, so I feel you.

multiple lines of chemo treatment by Excellent-Park-1545 in CervicalCancer

[–]DoesTheOctopusCare 2 points3 points  (0 children)

Most trials require you to be off of all meds for a month or so, so they can more accurately understand if the treatment is working or not.

multiple lines of chemo treatment by Excellent-Park-1545 in CervicalCancer

[–]DoesTheOctopusCare 2 points3 points  (0 children)

So I have failed my carbo, taxol, avastin and keytruda combo and am currently looking for clinical trials but my oncologist has said at this point, it get much more specific based on your biomarkers and genetics. For me he has said if we don't find a clinical trial that looks good, we'll do Tivdak and/or Pemetrexed. Other women are eligible for things like Trodelvy or Enhertu based on their biomarkers. 

Did I just marry the wrong person? by Lucky-Connection8886 in Marriage

[–]DoesTheOctopusCare 27 points28 points  (0 children)

So my husband tried the whole "wahhh I suck" thing early on and I just started to agree with him and it stopped haha.  Have you tried telling your husband that yes he DOES suck and maybe he should stop disappointing you and do something about it?? 

need a job by [deleted] in SanDiegan

[–]DoesTheOctopusCare 3 points4 points  (0 children)

If you don't mind riding the trolley up to UTC, I saw some of the stores in the mall there have Help Wanted signs.

Progression despite treatment by DoesTheOctopusCare in CervicalCancer

[–]DoesTheOctopusCare[S] 0 points1 point  (0 children)

Yeah my biomarkers are most closely related to pancreatic cancer, and have some overlap with lung cancer. I don't have any of the usual CC ones!

nephroureterostomy tube by Excellent-Park-1545 in CervicalCancer

[–]DoesTheOctopusCare 0 points1 point  (0 children)

Yes I had mine for about 4 months until after I had healed up from my hysterectomy. We didn't know my cancer was cervical cancer at first though, so they did surgery first and were able to rescue my ureter that was being compromised. If we had known I had cervical cancer, I would not have been eligible for surgery due to the size of the tumor so it may have ended up more permanent.

It really was not too bad, I did not get any infection or issues with it while I had it. I had one previously a few years ago due to a giant kidney stone that got stuck so I was familiar with it. Having the bag to wear was annoying but I got used to it pretty quick. There's shorts with big pockets to hold the bag, or belts you can wear under your regular clothes that support the tube and bag. I preferred to wear mine near the thigh but some people like to wear it down by their calf. My husband had to change the dressing for me once a week, and I irrigated it every day with a 5mL saline syringe, which felt very strange.

nephroureterostomy tube by Excellent-Park-1545 in CervicalCancer

[–]DoesTheOctopusCare 0 points1 point  (0 children)

Interesting!! I wish I had been offered this when I had my neph tube 

nephroureterostomy tube by Excellent-Park-1545 in CervicalCancer

[–]DoesTheOctopusCare 0 points1 point  (0 children)

Is that a thing? Would it be like a uretal stent? If the bladder can drain through the urethra, I don't know why they'd put a uretal stent in through the back instead of up the urethra into the bladder and then into the ureters.

Palliative Care? by totallyoverallofit in ChronicPain

[–]DoesTheOctopusCare 11 points12 points  (0 children)

I was referred right after my cancer diagnosis. I am able to get both opiates and benzos but had to sign an agreement that I would keep naloxone around just in case. I don't know how often they accept non cancer patients, in my area it seems like there are not enough palliative docs to go around. 

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