u/Disillusioned-0984

Ok so I dont really need direct advice or help with this. But I just had to call this out. I posted a gofundme a few days ago to help with my cancer pet scan. For the most part the response has been incredibly helpful. And i sincerely appreciate the people who were about to donate.

However since then, I have had several people dm me offering to donate/send money on PayPal or cash app....in exchange for me sending them naughty photos. I have declined each offer.

But im utterly mindblown that any human would find this to be an acceptable thing to do. First off, if im sending anyone those types of pics...its gonna be my bf. And I havent been able to even do that in months because of my health issues.

And...like...what kind of person looks at my obviously unhealthy photos on my post and says to themselves "Yessss....i wanna see dirty pics of the 90 lb cancer patient. And I wanna pay for them."

Idk if any other ladies have had this happen...im positive I cant be the only one. And im not judging any ladies who may have agreed to do this. You do what you feel you need to do for your situation. But for me personally...nope...Its absolutely crazy. Id rather go stand in a walmart parking lot with a "please help" sign begging for change than to send dirty pics of my very obviously sick, fragile and worn down body.

Sorry, I just felt the need to call this out cuz I assume many people dont realize its happening when us ladies post something in here mainly cuz the people come straight to our dms.

Again, thank you to everyone whk took the time to comment on my post or donate. I am truly thankful.

I just had an issue and procedure that causes a likely permanent increase in pain. Before this, I was on 10mg oxycodone 4x per day. Now im on 4mg dilaudid 6x per day. I keep feeling like my oxycodone (at an equivalent dose) does more for the pain than the dilaudid. Am I the only one who has experienced this? I know dilaudid is supposed to be hands down more potent. But it just seems like the oxy works better on my particular pain.

So i am 1 year post treatment for stage 3b cervical cancer. Did 3 rounds of cisplatin, 25 external beam and 5 interstitial brachytherapy. I havent had a period since radiation. Fully went thru menopause last winter.

A few days ago I randomly started bleeding. Since I haven't had a period in over a year so I panicked and went to the ER. Thank god I did. About 2 hours after getting to the er I started hemorrhaging and passing baseball sized clots. I ended up losing 2 units of blood. I lost consciousness. The doctors gave me a bag of pressurized fluids and gave me a blood transfusion. The bleeding slowed down. But my blood counts dropped dramatically to severely anemic levels. I was transported to a bigger hospital where my gynecological oncologist was based out of and they were able to do a procedure called a uterine artery embolization to cut off blood flow to the left side of my uterus and stop the hemorrhaging. I was just discharged from the hospital today. I have been in more intense pain than I have ever felt in my entire life. It is crippling. Has anyone else experienced this? Has anyone else had this procedure done?

I posted a few days ago and got a huge response from people who were shocked at the fact the my doctor actually prescribes real pain meds for my pain. Many people asked where I was located and how I get them prescribed. And it seemed my response confused some people. So I said Id make a full post in case this was a topic people weren't aware of.

Ill make this explanation as short as possible...last year I was diagnosed with stage 3b cervical cancer. The tumor was pressing on a nerve and ureter which causing kidney swelling. Tons of pain. I was taking 800mg ibuprofen and Tylenol every 6 hours and living with a heat pack on. So my oncologist started me on a regimen of tramadol. She started me at 50mg...did nothing. Increased it to 100mg 3x day....still absolutely nothing. Went thru treatment. Did both internal and external radiation. Caused horrible scar tissue adhesions in my abdomen/pelvic region. Extremely painful. So she added oxycodone to the mix. Because my doctor knew I had a history as a heroin addict (been clean 8 years), she wanted the pain pills to be temporary since obviously it could trigger my addiction since its an opioid. She had to start me on 5mg oxycodone 2x per day. After my internal radiation that actually got increased to 4x per day. That was last July. Over several months she weaned me down. By March I was taking 5mg 1x per day of the oxy and 100mg tramadol 3x per day. And using ibuprofen in between. In March i had appendicitis and had to have emergency surgery. They think the radiation i went thru actually caused the appendix to get angry and try to kill me. So theres that. Due to the survery my oncologist bumped me back up to 5mg oxy 2x per day. So surgery causes more scar tissue adhesions. Now I have them going from my uterus to bowels to bladder to abdominal wall and even back muscles. Its so incredibly painful. Especially when my bowels contract which obviously happens daily. The pain got ao bad in April that I couldnt get out of bed and missed an entire month of work. I actually went thru my full rx of 60 oxy within 2 weeks. I told my dr and she refilled it early. I was getting so upset and frustrated cuz my oncologist wouldn't bump my rx up any higher. Especially since she had already told me there was no treatment to help the scar tissue adhesions or ease the pain. That it would be a chronic lifelong pain condition for me. I finally I messaged her in May and said I wanted a referral to palliative care to help manage my pain. I told her that the current pain management regimen she had me on was not sufficient and that my pain was causing me to be nonfunctional in my daily life. So she referred me to palliative care. 2 weeks later I saw the palliative care doctor and left the office with her having upped my oxy to 10mg 4x per day plus 100mg tramadol 3x per day plus 300mg gabapentin at bedtime plus 0.5mg ativan nightly to help me relax and sleep. She also prescribed lidocaine patches. She told me that it was insane my oncologist even had me on the lowest dose of oxy and only 2x per day. Oxycodone is short acting. Peak plasma levels around 2 hrs. And usually wearing off around 4-6 hrs max. She said taking it twice per day was doing nothing but chasing the pain and we needed to get ahead of it. And omg was she right. After putting me on 4x per day I was able to go back to work and start living half normal again. Still have bad days. But is has been a huge difference from where I was 2 months ago.

So i say all that to say this....there seems to be some misconception out there about palliative care. Many people think it is only for end-of-life life. It is not. That is hospice care. Palliative and hospice care are separate and different. You can always Google palliative vs hospice care and this is the explanation it gives:

"Both palliative care and hospice focus on maximizing comfort and quality of life for individuals with serious illnesses. The primary difference is timing and treatment goals: palliative care is provided alongside curative treatments, while hospice is specifically for end-of-life care when a cure is no longer possible."

Even i was misinformed about palliative care until i did research a month ago. My cancer is considered curative. Not terminal. So i didnt assume I qualified for palliative. I wish id have known because id have started much earlier when my pain started last year. Anyways...palliative care is basically for anyone who has a serious illness, disease or disorder that affects your normal day to day life and affects your ability to function normally. Its very similar to pain management. The only difference really with my palliative care is theres no pill counts or drug tests. And my palliative care doctor treats anything affecting my quality of life. Pain, anxiety, sleep, etc.

As far as im aware from my research, every hospital system has a palliative care specialist. Sometimes they are the same people who handle hospice. Sometimes they are separate. You do have to have a referral. But ur primary care doctor or neurologist or whoever you see can send the referral.

So thats my story and how I got help. I hope this information helps someone to be able to get the pain relief you need. For those who asked where im located...i am in the US. And my doctors are all in Maryland.

So ive been put on 300mg gabapentin at bedtime to help with neuropathy. Along with my 10mg oxycodone 4x per day and 100mg tramadol 3x per day. My question is...is anyone else on gabapentin???? I keep trying to take it but stop after a few days because it legit makes me feel drunk about an hour after taking it at night all the way til mid morning. And not fun drunk. Lol. Im off balance, dizzy, uncoordinated. And while it does cause deep sleep...sorta...it also make me almost sleep walk. Not actually sleep walk. Idk what to call it. Im a smoker. So I end up waking up 5x a night and lighting a cigarette for no reason and falling back asleep. Burned like 5 blankets. Had to move my cigarettes out of the bedroom to avoid it. Still wake up and do random shit. Dropped my phone and broke the screen. Idk why its happening. None of my other meds cause these symptoms. Just the gabapentin. Does the weird symptoms like drunkenness and weird sleep ever go away? If so, how long does it take? Its driving me nuts.

So 1 year since initial treatment for stage 3b. First treatment was 5 cisplatin, 25 external radiation and 5 brachy. Been on keytruda every 6 weeks since. Recent CT scans (due to appendicitis) show a 2.5 cm mass on my cervix. Last pet scan in December showed still decreasing uptake (down to nearly nothing). Onc scheduled early pet scan for next week due to the mass showing on my CT. She isnt sure whether its scarring, fatty dead tumor tissue or active tumor returning. Obviously im panicking about it being active tumor cells.

I was hoping maybe some of you lovely ladies would be willing to share your experiences with recurrence so I could get a clearer picture of my options if this is a recurrence. Im curious about the second line treatments and how efficient they are at being possibly curative. Im 41 and my dr has said she does not just want to do chemo treatment to "extend" my time. She wants curative options for me which may include finding a surgeon willing to do a hysterectomy on a patient who has had radiation before. Apparently we are considered high risk. Idk.

I think im just looking for a little bit of positivity and hope. Lord knows ive been thru all the scary negative possibilities in my mind already. I dont want to feel like recurrence is a death sentence. But its hard not to feel that way. Im also anxious because my body did not handle treatment well the first time. I dropped to 85 lbs. Couldnt eat. Couldnt function. They actually couldnt give me my last 2 doses of cisplatin because I had dropped like 25% of my.body weight within 4 weeks. So im extremely nervous about the thought of possibly having to go thru treatment again

I know I am kinda putting the cart before the horse. I dont have my pet scan results yet. But if this process has taught me anything its that being informed and prepared makes all the difference.

So if anyone is willing to share their stories or info regarding recurrence and treatment, I would be greatly appreciative.

So last year I was diagnosed with stage 3b cervical cancer. Did 4 chemo, 25 external beam and 5 brachy. In September, my first scan showed only slight uptake in my cervix and lower uterus. Dr said likely due to inflammation because I had interstitial brachytherapy which is more intense. I was scanned again in December and the uptake had decreased even more. And the scan report said there was no corresponding mass to the uptake. So my oncologists all said that live cancer cells dont decrease on their own. So they assured me it was just inflammation. Last month I started having issues with my bowels and had to get a CT scan. CT showed a 2.5cm mass on my cervix. Oncologist says it is probably just fatty or scar tissue left over. But that it also could be the cancer coming back. I got may 8th for an early pet scan to see. I am now in my brain freaking out about it being a recurrence. I know that my treatment options are way more intense and limited if it is. Apparently my options will be surgery which is risky and hard to find a surgeon willing to do it after radiation due to scarring and complications. Or more chemo treatment which isnt considered curative...only a means to extend life. I already know that I would be definitely going for the surgery. I have heard of some people having everything removed in that area requiring a urostomy and colostomy bag. Is that the standard? Has anyone heard of someone just being able to do a full hysterectomy instead for recurrence? I would truly love to avoid taking out my other pelvic organs. Im 41 and do not want to deal with a pee and poop bag for the rest of my life. Although I will if theres no other options.

Anyone experience recurrence the first year after initial treatment?

Anyone have recurrence and able to cure it with just a hysterectomy?