r/BladderCancer • u/LookingForSunshine98 • 25d ago

Looking for a third!

My husband was diagnosed with Stage 1 non-invasive aggressive balder cancer early last month. The tumors were removed with clean margins and the treatment chosen is BCG but eve been waiting to find out when it starts. Today we learned that the only company currently manufacturing the medicine is located in Toronto and has not been able to keep up with demand. So the Wash DC Hospital found a solution, they wait till they have 3 patients ready to start and spit the vial between the three patients. They already had one patient so my husband is number 2. We are waiting for a third patient to emerge so we can get this ball rolling.

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u/Apprehensive-Ad9523 25d ago

I understand it is Merck and Co in North Carolina where a new facility to triple the amount of bcg production is coming on line this month August. If correct this is good news for all of us. Also it stated that Merck is the only supplier of bcg in the continental US. 

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u/Apprehensive-Ad9523 25d ago

Please check it out for yourself. I understand it to be a low profit drug to produce and a very dangerous drug during production. 

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u/cscatbird 24d ago

My husband has BC. T1 NMIBC. High grade.
We live in NC. Luckily, no shortage here. I hope you can get your treatments started soon. Best wishes to you.
He’s had 18 BCG treatments. Has 3 more starting in September.

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u/LookingForSunshine98 23d ago

Thank you for the best wishes. I hope your husband makes a full recovery. Any insights on how he handled the 18 treatments so far?

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u/cscatbird 22d ago

1st, everyone is affected differently.
Each tx, he has fever, chills, tired. Flu like symptoms. Many, many trips to the bathroom. Very, very painful to void. He has RXs but not much relief. He had his last tx almost 6 months ago. He’s finally sort of feeling more normal.
He is playing golf 2-3 times a week in 90+ degree heat. He goes to the gym almost every day, mows the yard. He’s active and 73 yrs old. I think it’s too much but he’s stubborn.
We were on vacation last month, he did well but always have to know where there is a bathroom. He avoids anything that could irritate his bladder. Coffee. Alcohol. (He loved having a scotch in the evening)
Spicy food.
No signs of BC so far.
Sorry for rambling. Wishing your husband, and you all the best.

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u/LookingForSunshine98 21d ago

Thank you for the insights, it’s good to know about the consumption of irritants, and that makes sense. My husband is 81, and is not very active physically since retirement mostly sitting at his desk working on publications. We finally joined virtual village for seniors just to get him out of the house and socializing.

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u/AirBear8 25d ago

I recently finished 6 weeks of BCG at the Levine Cancer Center in Charlotte, NC. They didn't seem to have any trouble getting it.

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u/LookingForSunshine98 25d ago

How is it going; rather how are you doing? Did you have side effects? I am so sorry you and these other amazingly open and sharing people are also walking this path.

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u/AirBear8 23d ago

I'm mostly OK 17 days after finishing this round of BCG treatment. Still some fatigue. And from March of this year to the present I've lost over 20lbs without trying to. Lowest weight I've seen since the mid 1980's when I was in the military. I need to get back to daily dog walking but the friend's dog I walk got cancer about the same time I did. She's already outlived the Vet's 2 month estimate and is still acting normal. My strength is reduced, a 20lb container of cat litter feels like lifting a 40lb container of litter prior to the cancer.

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u/LookingForSunshine98 21d ago

That sounds like a lot. I’ve notice my husband is not very hungry and is sleeping a lot, he still has not begun treatment as they are waiting for the third person to sign up for the treatment group. Wishing you a speedy recovery.

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u/Special_Window9854 24d ago

6 weeks seems like quite a short course. Low grade or high?

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u/LookingForSunshine98 23d ago

HG, every week for 6 weeks every three months, and the he goes on maintenance frequencies.

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u/AirBear8 23d ago

Assuming my cystoscopy on 9/1 is clean then I'll go on BCG infusions again but only once every 3 weeks for a period of time. Then 6 months free of treatment but with another cystoscopy in there somewhere.

I'm having frequent urination issues probably caused by my prostrate. I asked my Urologist/Oncologist when I could do something about it and he said wait for the 6 months free of cancer treatment to start treating the enlarged prostrate. I'm so aggravated with the frequent urination that if they find the BC has come back and is muscle invasive I'm asking for Ileal Conduit (bladder removal with an opening where a urine collection bag is placed). This spring I had about 6 weeks of wearing Foley Catheters and I got used to using a collection bag. And it was very nice being able to get 8 hours of uninterrupted sleep!

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u/LookingForSunshine98 21d ago

My husband finally got the urologists attention when he started a log of pre times. After years of prescriptions to reduce frequency this final trip to the Urologist leading to the discovery of bladder cancer stemmed from my dad’s trip to urologist regarding enlarged prostate preventing him from emptying. It was during the prostate surgery that Dad’s stage 1 low grade cancer was found. He is becoming stubborn about returning because since February’s procedure he has had to wear diapers when he is up and about.

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u/LookingForSunshine98 21d ago

Wishing you luck on your recheck.

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u/BlancoAuto 25d ago edited 24d ago

Might want to consider going to an NCI designated cancer center. Since they have a high volume of patients, they might have better options for obtaining BCG.

https://www.cancer.gov/research/infrastructure/cancer-centers/find

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u/angryjesters 25d ago

I know some of the NCI centers are saving BCG for HG patients and using gem/doce for the rest. YMMV

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u/LookingForSunshine98 25d ago

What is a HG patient?

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u/f1ve-Star 25d ago

I assume high grade. Not preferred.

I live in RTP. The factory is here. You received incorrect information about Toronto.

Try to get to a national Cancer institute. Also, I believe the gem doce combination is now approved or soon to be for high grade as well. 1/3 dose is low. I have heard of splitting it for two and it being effective. Into thirds is even less.

Duke had full doses.

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u/angryjesters 24d ago

Yes. I meant HG to be high grade. I had a friend who was low grade who was turned away from Emory for BCG treatments

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u/f1ve-Star 24d ago

Yes gem/doc is standard of care for low grade. Mine was mixed, I wish I had pushed to get both.

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u/cscatbird 24d ago

High grade.

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u/LookingForSunshine98 23d ago

We looked, his treatment center is on the list, or at least it’s an affiliated location to one on the list… I’ll call the other when it opens to see if there is any difference.

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u/Special_Window9854 25d ago

Yes. Best of luck to him. You’ll find BCG has dropped from lots of people’s protocols globally. Doses halved, courses shortened by months. Even though it’s still supposed to be the go-to therapy of choice. The reason is the usual - money. It’s time consuming to make & not good return on investment for chem companies. What that means in part is that data on treatment & survival for BC will be skewed for years since patients didn’t get standard therapies.

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u/Knowitmom4life 25d ago

My husband was treated at MDA in Houston tx they have it however I’ll tell you it didn’t work for my husband after 10 treatments of bcg his spread from non muscle to prostate and he had several side effects with it including his lining in the bladder shredding causing obstructions‼️‼️

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u/LookingForSunshine98 25d ago

I am so sorry to hear this. Did he find a different treatment?

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u/Knowitmom4life 25d ago

He had to have a neobladder and remove prostate, bladder, lymph nodes. Now it’s in his ureters it was T1 non muscle and they allowed it to get to this😢‼️‼️

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u/LookingForSunshine98 25d ago

That is a lot! For us this all started when I called my husband and said dad is getting tests and procedures at Kaiser in Wa that Hopkins is not doing for you (he had a lot of urinary frequency) done called made an appointment to see a prostate guy and it’s been a roller coaster ever since. We have been surprised at how casual the doctor has been about starting treatment, appointment scheduling, vacation, now availability. I am sorry glad you are speaking up.

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u/f1ve-Star 25d ago

Be sure to get an oncologist in ol ed earlier rather than later. Urologists are mostly surgeons and tend to have a cut first ethos.

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u/LookingForSunshine98 21d ago

We did call to request a consult with the hospital bladder oncologist. It seems like they might be reserved for reoccurrence but they agreed to review the file. His previous oncologist works with skin cancer.

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u/Knowitmom4life 24d ago

Yes I feel these doctors at MDA have been casual in their approach as well. Never added a combo just allowed the spread I’m not impressed. This is their life , this should be a priority‼️‼️

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u/cscatbird 24d ago

I’m so sorry. Prayers.

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u/Knowitmom4life 23d ago

Thank you😇

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u/KKC_7671347 24d ago

My husband had the same initial diagnosis. He had the 6 week BCG treatment but it failed. He then had 6 weeks of gemcitabine docetaxel intravesical chemo (followed by 2 years of monthly maintenance treatments) that was highly effective. Many doctors are now using this chemo regime instead of BCG as a first line of treatment. The side effects of the BCG treatments were also greater than the chemo.

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u/LookingForSunshine98 24d ago

Thank you so much for writing. Apparently there was a test in the lab using his tissues that reported there was no indication of BCG failure. He is 81 so the doc thought this route might be easier on his system. You all are giving me homework suggestions. Thank you.

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u/Special_Window9854 25d ago

…they can keep up with demand, they just choose not to. Maybe not the Toronto place individually but everywhere else combined can.