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We haven’t posted in quite awhile-Update on Bob
I check the forum every day for news of everyone. I was saddened by the recent series of passings & posted condolances. Although I’m pretty up to date on everyone else, I’ve held off on reporting on Bob as it seems everytime I do/did, I jinxed his progress.
Some of you may remember that Bob had his neobladder constructed back in Oct./07 & even with the Dr.s doing their ‘damndest’ to kill him, he survived a ‘gazillion’ infections & screwups only to be told within weeks that his cancer had spread to his lungs & was inoperable. So, then we went through Chemo- months of treatment, nausea, infections. He finished Chemo last fall & started getting back to normal, getting stronger all the time. Of course there was still the issue of the incontinence & the huge hernia, but he has accepted that & diapers are now part of his life.
He had a checkup in Dec. with the oncologist that had been on maternity leave throughout his Chemo- she was pleased with his progress & said they wuld do a scan every 3 mos. to keep on top of things. He had a CT scan in Mar. & a followup visit a couple of weeks later. I was unable to be present for that visit, but he came home just beaming & said he was going out to buy a lottery ticket. She had told him that the tumors were completely gone in 1 lung & so tiny in the other that they weren’t even sure what they were. Can you blame the guy for being excited? We called all the family, including his 90 yr. old mother. We laughed, we cried. Our daughter who is in the medical field even suggested that he start thinking about the sphincter surgery to correct the incontinence, Our son who is starting a new business was making plans on using his dads expertise in the ‘quality’ field.
Almost immediately after that last visit, Bob started experiencing some lower back pain. We tried all the usual home remedies without success & a few days later he went in to see the GP. (Can you see where I am going with this?) She said not the worry, it was just muscles, suggested a couple of things & checked for another UTI. The pain kept getting more & more acute. Last weekend he ended up at the Emerg. dept. where they admitted him, did XRays, put him on Demerol (which did nothing),& an antibiotic for the UTI that the GP said he did not have. During the night they put him on Morphine & on Monday did an MRI. They released him on Tues. & called with the results that afternoon to say that there was now quite a lot of Cancer in quite a few vertabrae. We had an appointment with the pain DR. on Wed.& he has been on Morphine ever since- the injectable kind along with pills & some other potent stuff.
So folks, that is where are at- on top of the world to total shock in a few days. I’m not sure that it’s totally sunk in yet- Bob is not talking about it, just accepting it & trying to get comfortable. We got him an adjustable bed which he said is good & he gives himself the shots (because I’m such a baby). I’m going to stop now, please keep Bob in your prayers.
Regards, Lorrie -
21 Replies
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Lorrie…i’m aware of a recall of fentanyl in Dec of 2008 and not sure of the status of it right now or if some of the old stuff is still out there?
Patches containing the prescription painkiller fentanyl have been recalled because of a flaw that could cause patients or caregivers to overdose on the potent drug inside. Sold in the United States under the brand name Duragesic by PriCara and generically by Sandoz Inc., the recall includes all 25-microgram-per-hour patches with expiration dates on or before December 2009. Some of the patches may have a cut in the lining of the internal reservoir where the drug is stored in gel form. If the fentanyl gel leaks into the drug’s packaging, it could cause a patient or caregiver to come into direct contact with this powerful “opioid” drug. This could result in difficulty breathing and a potentially fatal overdose.If this reservoir is cut, it can be seen when the foil pouch containing an individual patch is opened. Damaged patches should be flushed down the toilet and not handled. Skin that has been exposed to the gel should be thoroughly rinsed with water, but not washed with soap. (While the patches should be flushed down the toilet, you should keep the packaging and/or make a note the brand name, lot number, and expiration date of the defective patches). Please use extreme caution handling the packaging.
In December, the FDA put out its second warning in two years about the dangers of misusing the powerful drug.
The drug is intended for chronic pain in people used to narcotics, such as cancer patients, and can cause trouble breathing in people not used to this family of painkillers. Yet the FDA found cases where doctors prescribed it for headaches or post-surgical pain.
Pat……… -
Good for you for speaking up Lorrie.
What dosage of Fentanyl is Bob getting. Dick was always on the every 3rd day schedule and they just upped the strength. What he would do was leave one patch on for for a day as it takes 12 to 18 hours to get into the blood stream the Dr. said.Also they started to put Lidocaine patches on the area where it hurt. They were on 12 hours and off 12 hours. Dick said they helped and there is no effect on the bowel. Do your best to stay ahead of the constipation. It can sure make a person miserable.
How are you doing. I hope you are able to have some help taking care of Bob.
Julie
Volunteer Coordinator
ABLSCHi Lorrie….
I’m kind of glad your doctor added Gabapentin as they are not sure how it works exactly but it seems to block nerve pain…its used a lot with shingles patients and other neuropathic pain.
Gabapentin Capsules is used for:Treating seizures associated with epilepsy. It may also be used for treating nerve pain associated with herpes zoster (shingles) infection (postherpetic neuralgia). It may also be used for other conditions as determined by your doctor.
Gabapentin Capsules is an anticonvulsant. The exact way that it works to prevent seizures and nerve pain is unknown
One thing not to mix with any of the drugs is grapefruit juice..just avoid it. Grapefruit juice can inhibit CYP450 3A4 and may theoretically increase the plasma concentrations of fentanyl. I’ve also been reading some new literature on orange juice and though its not mentioned yet it is popping up with other drugs.
Hopefully you can ease on the morphine as those fentanyl patches are really strong. The meds actually stay in your system for up to l7 hrs after removing a patch. Just watch him for any Central Nervous System problems…which i think from your description of him he’s already had..the sluggishness, difficulty breathing.
I think your daughters observations were right on target. I remember when my father was in the hospital after heart bypass surgery gone bad (they opened him up 3 times in 4 days!!) he was on so many drugs he just wasn’t my father anymore. He became surely, then just went into failure to thrive and their answer was to put more drugs into him. I didn’t know if the pain was talking or the drugs? I wanted to baseline him to see what was actually going on. They wouldn’t listen to me in the hospital, they fought me in Re-hab, and then he was sent to a pschiatric center where they threw more anti-psycotics into him, and finally transfered to a Alzheimers unit where i found a great doctor who agreed with me and finally we began to eliminate the drugs one by one. He still had short term memory loss but he was my father again and could now walk and carry on a conversation…long term memory no problem…..and all he needed for pain was an occasional tylenol. I was able to get him transfered out of the Alzheimers unit and into a lovely assisted living home. Anyway i realize this is not a cancer case but i have to wonder sometimes about the cycle of drug use and the dependence on them.
I truly hope the Gabapentin may provide some relief and block the right nerve pathways……….Pat
Hello All
Just want to give everyone a quick update on Bob. The pain was so bad that along with ‘upping’ the Fentanyl patch, they want it changed every 2 days instead of 3. They put him back on Morphine injections for breakthrough. It was awful watching this…..shuffling between the recliner chair & the bed was pretty much it for him.Finally had the catheter taken out last Thurs. AM- YEAH, he could pee! He felt so much better with it out. Then we were off to see the pain DR. in Kitchener.I got angry & asked what the plan was going to be……..were they going to just going to keep increasing the Morphine until he was unconcious????? Sometimes anger is the only way to get through to Dr.s- thye finally listened! He added Gavapentin, took him off the Morphine injections, increased the Morphine tabs to 4mg. every 2-4 hrs. We also met with a Radiation Dr. who hesitated as Bob’s worst pain is in an area where it does not show Cancer. He will wait until the next CT scan to say whether or not radiation would help.
Anyhow, this new med. seems to really help (our daughter was asking them to try this for months), he is much more comfortable. We still change the Fentanyl every 2 days & he is taking the 4mg Morphine every few hours as needed & the Gavapentin 3 times daily. He is much more alert (thank goodness)- of course the constipation will rear it’s ugly head again soon……………
Oh well, can’t have everything can we?
That’s it for now
Regards to all
Lorrie
Lorrie,
Thanks for the update. I’m so sorry to hear Bob is in so much pain. I just can’t bear the idea of anyone having to experience on going severe pain. I’ll pray the medical folks find a better way to help ease that situation. Who knew you two would ever have matching catheters…and yes, living with one does suck…one never really fully understands until tied down with one. You are doing a great job, Lorrie, of holding it all together in spite of everything you have and continue to go through…you’ve come a long way since the beginning of this journey…as frustrating and difficult as it has all been, you’ve learned and grown in positive ways. You, Bob and family are in my daily prayers and thoughts. Hugs, Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
Thank you to everyone for your good wishes and replies.
Things are a little grim at the moment. Not only is Bob in agony with the pain in the back, but yesterday they had to put in a catheter as his bladder won’t empty. The catheter keeps plugging, he has to flush it about every 4 hours as it’s plugged with mucus & some blood clots(from inserting the catheter we think). They took him off the morphine injections & gave him a Fentynol patch, along with 2mg. morphine capsules for breakhrough. He has taken quite a few of those already as the pain is so bad. I’m so glad that the nurse is coming everyday- I do not have any medical knowledge & they reassure us. Unfortunately we seem to get at least 1 new nurse every week who has never been here so we need to go through the whole history each time- it’s wearing but a small price to pay for their help. I joke that I’m going to make a recording that they can listen to, to learn his story.
He had a full body bone scan on Wed. & the Dr. he saw yesterday said that it looks like there is spine involvment but couldn’t be totally sure because the bladder was so full when they did the test- (don’t know why they didn’t put the catheter in then but……..)
On a lighter note—– Bob & I have matching catheters. I had Prolapse & TVT surgery on Tues so had to come home with a catheter. I have to wear it until Wed. next week.So, I’m not much help to him as I can’t lift anything over 5 lb. for the next 6 weeks. I never fully realized what my guy has gone through until I got my catheter- it sucks having this thing!!!
We don’t know what is around the corner, each day seems to bring a new challenge. I am so thankful for our children who are here to help in any way they can, my very good friend who is looking after the building while I recover, and for my friends here who understand & let me vent.
Regards to all
Lorrie
I am so sorry to hear this. My heart and My prayers go out to you. Please keep a good attitude and keep us in the loop. We are here for you. Lots of questions and lots of worries. If you don’t like the answers you are getting…raise a fuss. Or Go somewhere else. Be aggressive.
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Lorrie-
So sorry to hear your news. We are in a similar boat. When Mama started having the back pain in November, they started her on morphine. The constipation was SO BAD. Nothing seemd to work. She finally quit the morphine altogether. She has sine had some good months miraculously. Now it seems we have gone from bad to worse pretty quickly. Don’t know what to expect. It helps to know we are not alone, but I’m so sorry Bob is in pain.
Lorrie,
So sorry to hear the news about “Your Bob”….reminds me so much of mine.You all are in my prayers.
Clara
Caretaker of husband, Bob.
Stage IV
Diagnosed Jan, 2007
Lorrie,
I forgot to mention this…not sure if it would help or not but may be worth trying to see if it can ease the constipation issue Bob has…I take 1200 mg. of fish oil (omega-3) daily…sometimes twice a day and it seems to help keep the bowels working smooth and regularly. Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
Lorrie,
Thank you for updating us…have wondered how Bob was doing…he has been through so much…both of you have….what a fighter he is…will add you both back to my daily prayer list. I probably should keep all of us on the daily list as life is fragile and none of us knows when our name will be called. May the peace that only God can give, be yours. Hugs, Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
Lorrie, I think Morphine stops some peoples bowel activity I know Dick was so bothered by constipation that he stopped his morphine. I thought it was telling that he would choose to endure the pain rather than have morphine. They then put him on the fentanyl patches with Oxycodone for breakthrough pain which is less constipating but he did have to keep taking the Senokot and occasional doses of Lactulose. It is also important to drink lots of water.
Dick’s pain levels were such that they were increasing the medication dose about every 3 weeks and toward the end more frequently. He did have palliative radiation treatment and they used the latest equipment that was able to target the metastasis to the bone. He did not have any burning but it did leave him extremely fatigued. It slowed down the pain progression for a little over 2 months. It was after the radiation treatment that he was given the medication for nausea and an anti-depressant which help him to regain his appetite. I believe the goal of radiation treatment at this point is for pain relieve only.
I hope by now the constipation issue is resolved.
Julie
Volunteer Coordinator
ABLSC
Good Morning Everyone- Thanks to you all for the replies- it really helps to know we are not alone.
The constipation is a huge issue right now- it’s been 6 days now. Bob’s nurse gave him an enema last night but it still has not worked. She will be here this morning so will likely do it again. The constipation is putting a lot of pressure on his back & increasing his back pain.Poor guy.
Hard to believe but the Cancer Hospital in Kitchener was closed yesterday (Easter Mon.)- so I will be on the phone 1st thing trying to get an appt. with the Oncologist & Pain Mgmt.Dr. I have absolutley no faith in the Guelph General Hospital here & at this moment treatment is relying on the MRI done in Guelph. (This is the hospital that tried to kill him on more than 1 occasion)
On an even sadder note- yesterday Bob actually started to talk a little- several times he made suggestions as to how I should do things & who I should call about things around the building. He wrote a supply order & circled things in the catalogue so I would know what to order. This is a huge step for him, so I just let him do it & I didn’t argue.
Thank you for the info. on Radiation TR. I also asked his nurse. She said they could treat the places on the spine & then he hopefully wouldn’t be paralyzed. That was the 1st time I had heard that word & I guess I looked so shocked, she apologized for scaring me. We didn’t say anything to Bob.
That’s about it for now. We are praying for a ‘good poop’ today.
Regards,
Lorrie
Lorrie, My heart goes out to you, and my prayers are with you! I know you will keep him comfortable…I am so sorry you both are on this roller coaster ride.
Karen
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
Lorrie,
I did not experience what your husband is experiencing – but my father did. Yes – his time from all clear to full blown bone metastasis was very quick. He was scanned at the end of September and given the all clear and then in mid-October he started having very bad back pain. He went to his GP who said he must have pulled something and gave him some muscle relaxers – he went to a chiropractor who said he needed to see him every day and worked on him for a week (can you imagine being adjusted every day when you have cancer in your back – the guy is a quack) and then finally, my stepmother took him to the emergency room when she could not get him out of a chair and he became delusional. The delusions are something to watch when the cancer hits the bone – be sure they are monitoring his calcium.
As for radiation. My father had a full cycle of treatments and it was painless and left no burns etc. It helped with the pain – where they could reach – but, it did wipe him out pretty good. I think it is best to work with the doctor to create a full pain management plan, where drugs, radiation etc. are considered as well as quality of life.
I hope this helps.
T.R.
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