Homepage – Forum › Forums › Metastatic Bladder Cancer › More pain for Mike…with some good news though
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KIOWA.
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January 26, 2013 at 3:57 pm #7698
Anonymous
InactiveHi All,
Haven’t posted in a while because Mike has been dealing with a lot of pain since just before Xmas. It started out as a what we thought was just a pulled muscle in his back. Not so. We spent Xmas day at Emerg and then Dec 29 again. Everything looked ok on ultrasound. No infection but excruciating pain nonetheless.
So, back to see the uro and they are perplexed. I didn’t quite understand just how rare Mike’s type of bladder cancer was. It is what they call plasmacytoid variant and it’s VERY rare about 1% of bladder cancer patients have this type – there are only about 100 documented cases in the literature. It’s also highly aggressive and doesn’t follow any “normal” path so it is difficult to predict what might happen if he had a recurrence.
Mike’s spine was very sore so they did a bone scan a week ago. All clear…no bone metastasis. YAY! GOOD NEWS#1.
Yesterday, they did an emergency MRI on him. All clear…nothing wrong in there at all. No cancer causing all his pain. GOOD NEWS#2.
Now they are thinking that maybe the pain is nerve pain that might have been caused by his RC and neobladder operation. So the next step is try some pregabalin to see if that helps.
All this to say…we need a great big BCC group hug. Mike is tired of being in so much pain and me, well I’m just tired.
Need a little encouragement from the gang 🙂 I’ve already gotten Jack and David involved so I figure I should get the rest of you in the loop.
Thanks for listening.
Monique…(and Mike too)
January 26, 2013 at 7:09 pm #14886KenB
ParticipantMonique and Mike, no wonder you are both so tired; you are dealing with big challenges. We’re praying that there is more good news coming along for you particularly in dealing with the pain. So, here from one member of the BCC group is a hopeful contribution to the group hug. I and many others I’m sure will be thinking of you and praying for the relief you both need. Ken
January 27, 2013 at 3:02 am #14887Greg
ParticipantMike and Monique: Been away today but did not want to miss out on the hug!!! So here’s a tight squeeze from me – can’t squeeze too hard or … well you know the drill!
Pain is so debilitating, but it’s such great news that the cancer is not anywhere to be seen. Long may that continue. Hopefully the new drug is a big help.
So Mike is a rare breed is he? And he doesn’t follow a normal path! I guess you already knew that when you married him.
Don’t be too worried about the future. Predictions have a way of being unpredictable in any case. Trust he won’t have a recurrence and go forward. As the saying goes, and it sounds trite but isn’t really: “Life is not measured by how many breaths you take, but by the moments that take your breath away.” Pack those moments in every day. And if you both live to 95 you’ll have had an incredible life. And if shorter, it will still have been incredible!
Blessings.January 27, 2013 at 1:05 pm #14888Anonymous
InactiveThanks Ken and Greg…it helps. I can feel the hug from here. And Greg, if I live to 95, that would mean Mike would be 112. He just said NO DARN WAY is that happening unless they have intravenous tequila….maybe we should talk to Kiowa. 🙂
January 27, 2013 at 4:30 pm #14889Ieva
ParticipantLots of hugs to you and Mike!!!
Malcolm had a lot of pain post op. The surgeon felt it was increased by the side effects of chemo. He was referred to the pain clinic at St Mike’s – with excellent results. I sent you a message with the details.
Hugs!!!
January 27, 2013 at 4:31 pm #14890Carol
ParticipantSo happy to hear that the tests came back clear, I’m sending a big hug and all the best for the future….take care, Carol
January 27, 2013 at 6:17 pm #14891marysue
ParticipantMOnique, I’m glad the news has been good despite Mike’s pain. I hope that gets resolved in short order. In the meantime as requested ((((((BBBBIIIIGGGGHHHHUUUGGGG)))))) Keep us posted. Our thoughts and prayers are with you.
January 28, 2013 at 3:53 am #14892colleen
ParticipantHi Monique and Mike, I decided to chime in here as I, too, experienced debilitating pain post RC surgery that turned out to be nerve damage. (In my case, the pain was in my foot and leg.) It was excruciating! I described it to my husband as feeling as though my foot was sitting in a firepit of hot coals. Even a breath of air could cause the pain to spike. My GP referred me to the BC Cancer Agency’s pain clinic where they soon got me on a regimine of pregabalin (Lyrica) as well as hydromorphone. The doctor who treated me said that one rarely works as well as the two in combination. It took a while until I titrated up to the necessary dose to get my pain under control, but eventually I got some relief. That was a year ago. Eventually, I was able to go off the hydromorphone and then I very gradually began to wean off the Lyrica. My foot is still numb, but not nearly so painful and I can walk in relative comfort now. I am so grateful to have been referred to a pain clinic. My GP was good, but he didn’t know about the need to combine the pregabalin and the hydromorphone. The pain docs helped me overcome my concerns re taking narcotic pain meds and the clinic pharmacist helped me deal with attendant problem of constipation. Nerve pain can take a very long time to heal, so hang in – and get help from the experts if you can. Good luck!
January 28, 2013 at 4:05 pm #14893Zina
ParticipantHere comes another hug from me! I am sorry that Mike is in so much pain, but I am happy to hear that all the tests have come back negative for cancer. I hope he gets some relief for his pain soon.
January 28, 2013 at 6:52 pm #14894Anonymous
InactiveThanks GANG. The hugs help more than you will ever know.
Monique
January 30, 2013 at 12:02 am #14895KIOWA
ParticipantSounds neurpathic to me. Time to see a neurologist. Will keep both of you in my prayers.
Kiowa
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