Going in for cancer surgery tomorrow - bladder

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djrick

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Aug 17, 2011
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This week has been rough, I've been sick as a dog. Dizziness, shortness of breath, diarrhea, extreme fatigue and lots of aches and pains. I left a message for the doctor about it but no reply so I canceled my treatment for today. I'm not going through another week like that. So I finally got hold of the doc, actually his nurse who relayed the questions, and was told if it gets worse to go to the emergency room. I asked about lowering the dose and have not heard back.

I take lopermide for the diarrhea, it takes two tabs and that barely works. If the doc can't work out a lower dose or some other treatment then I'm done with him. He is highly regarded in his field but if he insists on taking the same dose then I will take no dose. I will see if he knows anything else I can try. Some doctors will work with you and some are like my way or the highway. I'll take the highway. I already have another doc who sent me to this one. I'll see if he has any ideas.

There are other treatments, some may be very expensive. There are dna based tecs that are tailored to your system. Last choice would be chemo or radiation. Then to add to the bad news, I got test results they did a couple weeks ago showing I'm shedding unusual cells typical of cancer. Not so good.

I'm so weak I hate to do anything. If it involves going across the room I have to think about it. I do feel a little less bad than earlier in the week so hopefully it will wear off.


Gullible,


[Hugs] of support. May the sunshine of good health shine upon you very soon.


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davidpaul

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Jul 3, 2015
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This week has been rough, I've been sick as a dog. Dizziness, shortness of breath, diarrhea, extreme fatigue and lots of aches and pains. I left a message for the doctor about it but no reply so I canceled my treatment for today. I'm not going through another week like that. So I finally got hold of the doc, actually his nurse who relayed the questions, and was told if it gets worse to go to the emergency room. I asked about lowering the dose and have not heard back.

I take lopermide for the diarrhea, it takes two tabs and that barely works. If the doc can't work out a lower dose or some other treatment then I'm done with him. He is highly regarded in his field but if he insists on taking the same dose then I will take no dose. I will see if he knows anything else I can try. Some doctors will work with you and some are like my way or the highway. I'll take the highway. I already have another doc who sent me to this one. I'll see if he has any ideas.

There are other treatments, some may be very expensive. There are dna based tecs that are tailored to your system. Last choice would be chemo or radiation. Then to add to the bad news, I got test results they did a couple weeks ago showing I'm shedding unusual cells typical of cancer. Not so good.

I'm so weak I hate to do anything. If it involves going across the room I have to think about it. I do feel a little less bad than earlier in the week so hopefully it will wear off.

Your problem makes so many of us seem petty and weak, in comparing circumstances.Your issues show many just how fortunate he or she may be. The old adage is true, there's always someone doing worse and suffering more in life. But not a lot of people ever acknowledge or confront it, most live within our own 'little' circle of life, so when something is not a reality to us because we have never felt it personally, we just don't know the true meaning or the depths of sorrow that happen.

I am not in any way trying to make you feel bad about your condition and life, I applaud you and with the inner spirit and strength you must have I know you are far from defeated, and a testimony of what human effort really means. Thank you for sharing your story to us, I know it will make someone somewhere sit back and realize they don't know the first thing about priorities. God bless and much love,

DP
 

wintermute

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Jun 17, 2011
Posts
765
@Gullible, I'm so sorry to hear what you're going through. If I lived closer to you, I'd bring you meals and do some house cleaning.

You do have a great attitude, which supposedly helps a lot when you're battling an illness. Please keep us updated on your progress.
 

Daz

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Oct 10, 2015
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692
@Guillible - I have only just read through this thread, and am very sorry for what you are having to go through. I'm also impressed with your attitude to the Dr always knows best situation.

I can only send you my best wishes and good thoughts, and hope this week has been slightly easier than the last one. Big Hug, Daz x
 

Gullible

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May 15, 2011
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2,599
Thanks for all the good words and well wishes everybody. I do feel better today, less stomach discomfort, less aches and pains, no diarrhea. My latest bout of symptoms was due to the medicine not cancer. Which is good because you can always change the medication. I skipped last friday's infusion and I'm still waiting to hear from the doc that he has or will lower the dosage. If I hear nothing back I will try calling again tomorrow.

I don't want to stop the infusions altogether because they are my best hope of getting rid of it or at least keeping it in check. According to what I read on the net, other doctors say lowering it to 10% should take care of the toxic symptoms and then it can be raised according to the tolerance of the patient.

The nurse who worked with me friday before last said she was a bladder cancer patient too. She has been taking infusions for years and no cancer for the last 5 years. But from what I've read you have to keep taking them at least once a year and getting tested. The risk of it returning never goes away but it may never come back.

I'm reading about other treatments too. I want to avoid systemic chemo, you know, the stuff that makes your hair fall out and does other damage. Radiation too does lots of bad things thats why the bacteria treatment holds such promise... if I can get a dose that doesn't make me sick and miserable all week.

Other treatments include dna based immunotherapy. They sequence your dna, which is much cheaper to do now days, and they come up with a treatment based on your unique chemistry. They can produce antibodies against the cancer and inject them, lots of tricks. Of course if my insurance won't cover it then it will be very costly. An aspirin might cost you $20 in the hospital so they do not let you off cheap

I'm glad my strength is returning and I can do a few things. My appetite seems to have come back too. Now I have to be careful not to pig out and regain the weight I lost.
 

Rylee

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Mar 29, 2014
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@Gullible Always thinking of you :flower: :heart:

Hey I saw on NBC nightly news 2 nights ago (thinking of you) there is an experimental treatment for many cancers, but top 17 deadly cancers. It was, targeting cancer cells in your dna. So far has 72% success rate!

A guy with No hope, they showed his whole body MRI/scan. Had Black masses in stomach region, mostly, then a 2nd scan after treatment. It was like a light bulb went on! It was GONE!

I did try to find it to link it here & couldnt, sorry. I have it on my reminder/phone. Was So promising as of now.

I truly feel genetic editing is promising to curing cancers specific or not to us.
It was a lot of info, hope this came across right?

Its CRISPR technology in general (that's targeting your DNA). Didn't hear T Cell.

Looked for it again, So much out there. Wish I could find that Current story!

If I find it, I'll link it :)

I had systemic chemo :( it's bad for So many reasons. You're whole body/bones, DNA, etc. & radiation :(
We can All agree Cancer Sucks!

I'm glad you're feeling better in general. That's SO important. Eat nutritious foods. Organic if you can. Don't need food that has been manipulated whatsoever! But everyone needs a cheat day :)

ETA I had Always believed there is a cure for everything in nature. Still may be, but idk anymore, can't hurt!
 
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notcharlotte

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Jul 21, 2013
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4,154
i agree, cancer sucks! i hope you can get some strength back, @Gullible, as i know the infusions are important. bladder cancer reoccurs, so i guess that's why the nurse has an infusion a year. i don't know if it's legal where you are, but many people find mmj helpful for nausea and appetite during cancer treatment. all natural too! nausea is horrible: it just takes over your whole life. i hope you keep feeling better.
 

Gullible

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Thanks @Rylee and @notcharlotte, I am feeling better. I had another infusion friday and so far no toxic reaction, knock on wood. But last time I didn't feel the reaction until late sunday so the next couple days will tell the tale.

My theory is that the catheter they used for the first infusion created a tear in some scar tissue. I have strictures down there and the csytoscope really tore me up. The doc had to force it in. The catheter a couple weeks ago produced some pain and I think there may have been some cuts or tears to the tissue which could have allowed the bacteria to enter the body. My symptoms sound like a systemic infection from the bcg bacteria. People have died from that and the doc when I finally got a reply from him said if it got worse to go to the emergency room. Luckily it did not get worse but slowly better.

This last time I instructed the nurse to go extra super slowly when inserting the catheter and the discomfort was minimal. They say the cure is sometimes worse than the disease, lol. I may have saved myself from another toxic reaction or even dying from the cure by my instruction to the nurse. You have to be your own doctor sometimes.

The doc never would speak to me on the phone but relayed through the secretary that he would send the new lower dose order thursday. I knew I should have checked before going over because you can't trust anyone these days. Sure enough, I got there and they did not have the new order and had to call and ask for it to be faxed. Doctors are about the only ones now days who use faxes any more. So, it took another hour and 20 minutes to get that but a patient's time counts for nothing right? Only the doctor's time counts. Next week I will call first to see if its there or not. In fact I'll call the clinic wednesday and if they say not yet I will ask them to call the doc. Then friday early I will check again.
 

Sly940

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Sep 25, 2014
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Thanks @Rylee and @notcharlotte, I am feeling better. I had another infusion friday and so far no toxic reaction, knock on wood. But last time I didn't feel the reaction until late sunday so the next couple days will tell the tale.

My theory is that the catheter they used for the first infusion created a tear in some scar tissue. I have strictures down there and the csytoscope really tore me up. The doc had to force it in. The catheter a couple weeks ago produced some pain and I think there may have been some cuts or tears to the tissue which could have allowed the bacteria to enter the body. My symptoms sound like a systemic infection from the bcg bacteria. People have died from that and the doc when I finally got a reply from him said if it got worse to go to the emergency room. Luckily it did not get worse but slowly better.

This last time I instructed the nurse to go extra super slowly when inserting the catheter and the discomfort was minimal. They say the cure is sometimes worse than the disease, lol. I may have saved myself from another toxic reaction or even dying from the cure by my instruction to the nurse. You have to be your own doctor sometimes.

The doc never would speak to me on the phone but relayed through the secretary that he would send the new lower dose order thursday. I knew I should have checked before going over because you can't trust anyone these days. Sure enough, I got there and they did not have the new order and had to call and ask for it to be faxed. Doctors are about the only ones now days who use faxes any more. So, it took another hour and 20 minutes to get that but a patient's time counts for nothing right? Only the doctor's time counts. Next week I will call first to see if its there or not. In fact I'll call the clinic wednesday and if they say not yet I will ask them to call the doc. Then friday early I will check again.

That sounds horrific. I can't believe you had to remind the nurse to be gentle before she began inserting the catheter. That's like having to remind a tattoo artist to stay inside the lines.

You're totally right about being your own doctor. I say that often. I am my own doctor first and from there I can refer myself to a specialist if need be.

Glad you survived the initial illness, then the treatment (so far anyway), and hopefully the cost of the whole damn ordeal. Western medicine is a minefield.
 

Gullible

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Thanks Rylee, I felt better this week, a lot less of the side effects after the doc lowered the dose. I think making them put in the catheter more slowly made a difference too. Some nausea, aches and pains, etc but today I feel not too bad. Tomorrow I have to go in for another treatment. I'll be glad when its done but in a way its never done.
 

Rylee

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Thanks Rylee, I felt better this week, a lot less of the side effects after the doc lowered the dose. I think making them put in the catheter more slowly made a difference too. Some nausea, aches and pains, etc but today I feel not too bad. Tomorrow I have to go in for another treatment. I'll be glad when its done but in a way its never done.

Hi Gullible, glad you finally got the doc to lower your dose. Plus you're feeling a tad better. I can't imagine the pain of the catheter. My dad had to have one for about 6 weeks, it was very hard on him.

Hopefully your treatment will be easier. I wish it will completely go away for you someday.
Take care & remember I'm always thinking of you :heart: :flower:
 

Gullible

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Thanks @Cbirkle68 I'm doing ok. Picked up a uti infection somehow this week so they put off the infusion friday until later. I hope to hear from the doctor monday. I'm taking maitake and reishi mushroom extract now in addition to the turkey tail.
 

Gullible

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I finished the 6 bch bacteria infusions and today went in and the doc took out the stent that was in since august. I had no idea what it looked like but it resembled a piece of wire or string about maybe 8" long with a circular loop at each end. Doc said one end in the bladder and one in the kidney. I no longer have some discomfort that I suspected was due to the stent and apparently was.

Doctor found nothing wrong when he took a look but said he could not tell. They are doing a test and will let me know if any sign of cancer returning shows up. He said there is a 30% chance it will return and I'll need to have the bladder out. That is a major operation and leaves the patient using an outside bag similar to colostomy bag with a hole in the abdomen and something going to the bag that has to be emptied. Needless to say I hope to avoid that. I figure the 30% figure includes a lot of smokers and people with bad diets. I don't smoke, eat meat or excess sugar. I take vitamins and herbs including ones known to fight cancer so I think my chances are much better but you never know.

I will be going in every month for a year for maintenance bcg to keep it from coming back. If it does anyway they might have to go with chemo. If it comes back bad and penetrates into muscle tissue then the bladder has to go out. BCG is tuberculosis bacteria which attacks bladder cancer for some reason and stimulates the immune system to fight it. Its considered immunotherapy, less side effects than chemo or radiation. In another year he does another internal inspection to see if he spots any cancer. They will be doing the urine test monthly to check for that too.

So its not much fun but so far not that much pain or discomfort and so far so good. They have found many new treatments so if you contract cancer now its not an automatic death sentence like it used to be thought of.

I picked up a drug coverage in addition to what I already had so my bills should never be too high in one year.
 

Gullible

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I have had the first of 12 routine treatments to keep the cancer away. Apparently they did not find any signs of it the last few times I was tested. After that then they do a cystoscopy every year, that is a somewhat painful procedure but not too bad. Hurts mostly in the weeks that follow. Then I guess every year and perhaps more often come in for a urine test. They examine it closely for abnormal cells which could indicate a problem. Meaning so far so good but there is never a guarantee you are out of the woods. It could come back worse than ever.

The treatments were a type of immunotherapy which is being used more often now days. Its less toxic than chemo or radiation. I'm taking my usual vitamins and minerals along with mushroom extracts, chiefly turkey tail but also maitake, shitake, reishi and cordyceps. Luckily Im in a large enough metropolitan area with loads of older people so hospitals and doctors are like every other block, lol. Quality of care is important. Out in the sticks you might have to travel for miles and get to pick from one or two.

They have much better treatments now days, always go in if you have any of the signs. Look for abnormal marks or growths on skin, blood in urine or stools, pain anywhere that does not go away, plus other things like headaches, swelling etc. Catch it early and you are usually golden.
 
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