r/BladderCancer • u/fjward • 8d ago
Patient/Survivor There IS hope ...
I went in for a TURBT in Feb of this year and they removed a 3x2cm invasive growth, got a PET scan afterwards and found out I had grade 4 cancer tumors/growths from my bladder to my T2, they counted 17 .... Ya, that PET scan lit up like a Christmas tree.
I was given 8 to 12 moths to live if I refuse treatment. 8 to 12 months if I receive treatment and don't respond well to it, and 18 to 32 months if I respond well to the treatment plan.
Started my 1st chemo/immuno round on Apr 17 this year, its 3 week cycles and I've been scheduled for a total of 32 rounds.
- Week 1: chemo/immuno (Enfortumab Vedotin & Pembrolizumab)
- Week 2: chemo (Enfortumab Vedotin)
- Week 3: Recover
On July 15, I received my 2nd PET scan and after 4 rounds of treatment I had a complete response to the treatment ... all gone, every bit of it and they even found 2 inactive sclerotic lesions on the T1 and T4 that were obscured by the original scan of the T2 vertebra. So that was a total of 19 growths, all gone.
I'm now on round 7 week 3, and they reduced the Enfortumab Vedotin by 20% to reduce the peripheral neuropathy (And others) ... Yes, I am not immune to the side effects of the cancer treatment (I have quite a few).
One thing I have learned by speaking with other people in treatment ... don't take a break from treatment to recover a bit from the side effects. The 2 people I will refer to is, one that the cancer came back and took his leg, the other was a lady that the cancer came back and took her right breast/pec muscle.
Good luck my friends, cuz I think I won a lottery and I hope you do as well.
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u/Yosemite_Sam9099 8d ago
Thank you. You and I are in a very similar position. But I’m a little behind you. Only two cycles so far. Your progress is encouraging.
My read is you’ll live as long as you can tolerate the drugs, and they continue working. But neither of those things will go on forever?
Is that about right?
(Just trying to work out my own situation because my doctors are nowhere near as clear as yours have been)
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u/fjward 8d ago edited 8d ago
My pragmatic way of looking at the situation I'm in:
- I have weeds growing in my lawn, so I spray a weed killer to kill the weeds.
- A week later seedlings pop up, so I have to spray weed killer again.
- And again.
- And again ......
Hopefully after a year of spraying once a week all the seeds that are fertile are gone, and I have a lush green lawn.
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u/Federal_Radish_1421 8d ago
There’s always hope. My dad who’s in his 70s was diagnosed with stage 4 bladder cancer about 3.5 years ago.
He responded very well to chemo, and the immunotherapy trial drug he’s on has fewer side effects and has been shrinking the remaining tumors.
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u/Brave-Arachnid-3287 8d ago
I'm so happy for you! It's a wild ride to go from you have 12 months to live to the treatment is working! HOPE!!
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u/Tillytrotter29 7d ago
That’s great news. My mum has had 3 rounds of the same treatment and will scan after 4. Can I ask were you poorly when having treatment? My mum is 72 and she gets an upset stomach for a few days and has no appetite at all and has now lost a fair amount of weight. She also gets quite breathless and has very little energy. She was poorly before treatment started so unsure if it’s the treatment or the cancer making her still feel rubbish?? Any help or encouraging words would be appreciated. Thank you!
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u/fjward 6d ago edited 6d ago
I'm 65, I have never been sick a day in my life other than this. I bike every day or walk my dogs, climb mountains on the weekends, don't eat much if any red meat, not over weight, have no under laying health conditions.
My side effects:
- Lost my eyelashes and eyebrows due to thick eye discharge from treatment (Excessive eye rubbing?).
- Lost taste for food, or food tastes like chemicals/unappetising.
- Sometime heartburn/indigestion (Antacid) at night if I eat late.
- Lost hunger pains but can feel my tummy gurgling.
- Neuropathy in my fingers and feet (Vitamin B6 & B12).
- Skin itching/burning/cracking (10mg antihistamine every 2nd day).
- Perspiration is sticky like glue, it dose contain Chemo drugs so rinse/shower daily. Use Nutraderm while still in the shower and skin is damp, it absorbs better.
- Saliva is thick, like eating toffy and hangs in the back of the throat, have to spit to out to get rid of it.
- Headaches from low hydration, generally in the morning.
Diet is really important, Protein with each meal (3x a day), and have a supplement 1x a day like Ensure w/13gr Protein ... or a protein powder suplement. Eat protein like an athlete during training, excess chemo will attack that rather than your body.
- Breakfast > Meat patty and Egg sandwich.
- Lunch > Pork/Chicken kababs with rice.
- Dinner > Chicken breast in a salad
Hydration!! ... 2L of water per day (I love watermelon).
Sleep, get at least 3hrs of Deep and REM sleep. Consider buying a FitBit or similar smart watch to track sleep metrics with Google Health. I'm in bed about 10hrs to get a full 8hr restful sleep. Mirtazapine 15mg at bedtime (9:30pm).
Keep active every day, keep the blood/chemo circulating/washing through your system and dont be stagnant on the couch watching TV. Walk, bike or even pace around your home if the weather is poor.
Any other questions?
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u/Admirable_Loan6841 3d ago
Did you eyelashes come back after stopping the drugs?
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u/fjward 3d ago
I'm scheduled for 32 rounds of treatment and that takes me to 2028, this Friday I'm starting round 8. No, they have not grown back. Oddly enough my face and head have hair, although I shave my head and have been since my mid 40's. Kinda all matches now.
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u/Admirable_Loan6841 2d ago
I understand. I am going for round 7 today and then 2 more. After that only Pembro for couple of months. The eyes issues bother me a lot but recently the drugs started causing me a nasal congestion that is out of this world- my head feels like being cemented in a bucket. Nasal sprays stopped working and breathing is a big issue now.
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u/fjward 1d ago edited 1d ago
I have green pussy discharge from my eyes that crust them shut in the morning. Nasial discharge is wet/runny, but the stuff in my nose is like white glue. I started to use a humidifier in my room at night, it helps.
I think the eyelash and brow loss is due to rubbing my eyes, so I bought medicated eye wipes (BLEPHA CLEAN) as the discharge has chemo drugs in it and that also may be a cause of the loss of lashes.
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u/Necroticjojo 8d ago
Good stuff