Husband's diagnosis

16 years 10 months ago #5406 by wendy
Replied by wendy on topic Husband's diagnosis
Hi Clara,

I'm sorry to hear about your husband's advanced diagnosis. I hope the next scan shows positive results!

I was also saddened to see that there JC and Deb's husbands are in similar situations, but the courage and love shown here is very beautiful and inspiring.

The suggestions of Zometa for bone mets and the radio-therapy injections of Metastron and Quadranet (a new one to me, thanks!) are good ones.

I hope you don't mind me moving this thread to the 'metastatic blc' section, where I hope it gets more attention and replies from those in similar positions.

All the best,
Wendy

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16 years 10 months ago #5402 by Patricia
Replied by Patricia on topic Husband's diagnosis
Just have to make a note here that the standard for treatment was at one time in trials...
Pat

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16 years 10 months ago #5391 by DebTN
Replied by DebTN on topic Husband's diagnosis
Hello JC and Clara
I haven't been on the forum alot but have a very similar situation. My husband was diagnosed last Aug. he was 3/3 has had 7 months of chemo some response then last month uptake in the L1 L4 vertebra. All the standard chemo have been used. We just returned from Vanderbilt and Dr. Roth says radiation and bisphosphonates are the best plan at this time. No trials he said point blank we are here to help not make you feel worse. My husband is on lots of meds for pain and Roth feels the radiation will help.
I really wanted to tell you that there is injections for pain that work for many people. The two I have research and discussed with the doctors are Metastron and Quadranet they are administered approximately every three month. My sister father in law is on these he has prostate cancer that has metastasised to bones. He says about 5 days after injection he feels 100% better. I have also talked to 3 other patients at the hospital who recieve these. They are usually given after chemo is no help.
I know well hte feeling of dispair but am trying to make my husbands life as pain fee and enjoyable as possible. I wish each of you the best in this jouney and will pray for you. Debbie

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16 years 10 months ago #5388 by Patricia
Replied by Patricia on topic Husband's diagnosis
Clara....you can go to www.cancer.gov/search/viewclinicaltrials
I hope that link works ...or just go to the www.cancer.gov site and look for clinical trials and where they are doing them and see if any look promising to you.
I find it frustrating that they seem to be as bad at diagnosing male bladder cancer as they do with women. A CT scan with dye would have shown anything in the bladder...why were they doing MRI's? Since your husbands cancer is so progressed you might also want to consider Cancer Treatment Centers of America...they use the traditional therapies along with naturopathic medicine and nutritional therapy...you can read about them on their site at www.cancercenter.com. A friend of mine who had ovarian cancer diagnosed at stage 4 went through all the standard chemo to no avail and they sent her home with no hope...she went to one of the Cancer Treatment Centers as a last resort.......it worked. She's still with us. It may not work for everyone but i know i'd grasp at the last straw.
And JC i find it unbelievable that your husband went from superficial bladder cancer to stage 4....was he getting his check ups?...Did he try the BCG therapy. What happened?
This is why i keep saying get a second opinion ... go to the best doctors...go to the best hospitals. Pat

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16 years 10 months ago #5387 by Mike
Replied by Mike on topic Husband's diagnosis
Clara,
We live in Central NY and luckily we found a great oncologist. just alittle background for you. my husband was diagnoised with superficial bladder cancer 4 yrs ago and up until aug we thought he was cancer free. he started experencing back pain near the end of march of 2006 ( he thought he hurt his back on his snow mobile) by May it hurt so bad we made an appt with his primary care doctor. they did x-rays (showed nothing) and he was told to try physical therapy (which he did) still no relief, did the chiroprator still nothing. (the PCP made an apt. with a spine specialist).Before the apt with the specialist he ordered a MRI and Bone Scan. and thats when our lives changed.. He had radiation at the beginning to try and shrink some of the tumors causing him so much pain. then he went for a couple of cycles of cisplatin and gemzar,(that didn't work) tried the taxol (immediate side effects so they had to stop it . same kinda reactions with the taxotere) next he tried the ifosimide first round of it seemed to help alot. second round didnt seem to help much at all . our doctor then made us an apt in NYC at Sloan Kettering with a specialist in bladder cancer. unfortunately my husband isn't eligble for any of there clinical trial but he did recommend another chemo we can try. right now his back hurts so much that he is again getting radiation.. The last few months have been hell for us (not everyday).it's just so hard to watch someone you love in any kinda pain. managing the pain is difficult for him, he has a hard time keeping down pain medications so he uses the fentyal patch and the fentynal lollipops among other things. he will probably start the new chemo next week.. I'm not sure what the doctors are telling you as far as what to expect .. you may want to ask your doctor about clinical trials to see if there are any out there that will benefit your husbnad also there is a drug called Zometa it is suppose to help the bones. I do have other posts on this site under metastised if you want to skim through them.. the posts are under Jeanntte.. good luck to the both of you and stay positive.. please keep me posted..

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16 years 10 months ago #5386 by Clara
Replied by Clara on topic Husband's diagnosis
J.C.
So sorry to hear about your husband....this certainly does sound a lot alike.....You asked if he had symptoms such as blood.
He has never had any blood, just pain. I think the first sign we missed was pain in the pelvic area and of course I did not know how much pain there was.
Bob started really complaining with pain in the center of the lower back and every once in awhile he would have pain to the left and I would tell him that could be his kidneys. Finally, almost a year ago he agreed to at least to to the chiropractor with his back. He went to her until at least December.
Of course nothing ever showed up in any xrays.
We drove out west last Sept., went to the ER in N. Dakota, thought that maybe he had a kidney stone. They did an MRI without dye and told us they did not see anything, to take ibuprofen. Later after we were home our dr. talked to them about the test and they said he could have passed a kidney stone.
He was given cipro for a prostratitios and his prostrate was enloarged but then had the same problems again. Took more medicine and the urologist had told him he was fine.
During the meantime, our medical dr. had ordered an MRI and also sent him to a spine specialist.
He had an xray and a bone scan, the spinal dr. said he looked too healthy to be sick, said something was going on but at L1 but he was 90% sure that it was not cancer...to come back in 3 months after having another MRI.
The MRI that had been ordered by our md showed something in the bladder and our md called the urologist and talked to him, sent us back there. Had another scan on the bladder, went to the hospital and had a cystocopy. After that is when we found out what was really wrong.
Then went to the oncologist, set him up for a PET scan and made an appt. with radiologist. When we went to the rad., she thought we had the results from the PET scan but we did not. She had to break the news that radiation was not the answer at that time and sent us back to oncologist.
Started the chemo.
He has had one PET scan since then and not much change but a new place in the ribs.
Has taken all chemo that was scheduled and will get a PET scan on Fri. Will hear the verdict on Monday and discuss what is next.
Long story.
Where does your husband go to the dr.?

Anxious to hear more about your story too.

Caretaker of husband, Bob.
Stage IV
Diagnosed Jan, 2007

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