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Rich passed away yesterday afternoon, fighting this cancer was so hard on him and dying was no different. I had prayed when the time came he could go peacefully but, that did not happen. The last few days he was so agitated and no amount of meds could calm him down he kept saying “I’ve gotta go” and trying to get out of the bed and the labored breathing was so hard to watch. Nathan and I have lost a huge part of ourselves when we lost him, there’s a hole inside that can’t be filled and it hurts like hell but, I keep reminding myself and our son that he’s no longer in pain and we now have our own special angel in Heaven watching over us but, it still HURTS!
I want to thank everyone here for the help and info that this site has provided us with and I wish everyone effective treatments and a long happy life.
We got him home finally! His ammonia levels are now higher than when I first took him in they raised the amount of medicine for that but the Dr told me at some put the medicine won’t be able to keep up and then we will have to increase his pain meds to make him comfortable.
Hospice nurse has not gotten off to a great tart. She came to the house without filling his new pain meds then asked if I would go back to the hospital pharmacy and get them filled. That’s a 1 hour drive each way for me and what I was suppose to take Rich with me he can’t be left alone and no way will I make our 11 year old take on that kind of responsibility. So I told her no, the thing is the nurses at the hospital gave her the scripts and she would of walked right by the hospital pharmacy as she left to get into her car to come to my house. Our pharmacy here in town was already closed but thankfully we live in a small town and I know the pharmacist so I called and he opened back up for us and filled them and then said if we needed anything more before Monday just call him. One of the perks of living in a small town everyone knows everyone and what they are going though. I did tell her she was getting off on the wrong foot that she was suppose to be making this easier for us not harder and if it continued I would ask for someone else. May of been harsh but you don’t mess around with someone’s pain meds when they have cancer.
They put the drain in his stomach yesterday for the ascites and I was shown how to drain it here at home, it’s pretty straight forward and easy to do and now we won’t have to drive all the way back to the hospital each day to have it done. Another 2 liters was drained off. I forgot to ask the dr that does this fluid accumulate faster when you drain everyday if it does should you then do it every other day?
Now that he’s home I pray he’s not in a lot of pain and we can get into what is now our new normal routine.
Today Rich went into surgery to have a drain put in so when he comes home I can do it instead of going back to the hospital every few days, they got off another 6 liters today and it went well. He was suppose to come home today but again I noticed him not being himself at first they thought it was because of the morphine so I asked for another ammonia test and it came back even higher than when I first brought him in. He just can’t catch a break here. They increased his meds for it and then tomorrow they will test again and if all is fine he can come home. His Dr said these ammonia levels are going to be hard to keep under control that there will come a time when the meds will not be able to keep up because the liver is failing so fast so when that time comes they will stop that med and just increase his pain meds to keep him comfortable. He’s still in a lot of pain, one minute he’s fine then the next he’s double over in pain so trying to get the pain meds figured out is beginning to be a struggle but I promised him if there is nothing else I can do for him I will not let him lie there in pain!
Palliative Care nurse came in today and we agreed that Hospice Care would be our best way to go. With Palliative Care they do not come to the house to check on him, get his meds and are not on call 24/7, they are more like the person I would call at the Dr’s office and get advice if I had a problem or make appts for us, like she said she would of been the person we needed before all this happened now we are beyond what they can provide, sure wish someone would of told us about them before this I sure could of used their helped.
My biggest concern now is trying to get him home, he wants to come home so bad and Nathan and I are lost at home without him, neither one of us have a had a good nights sleep since he went in the hospital.
This is not how I wanted our summer to end and how I wanted Nathan to start his school year. Nathan is afraid Rich won’t be able to make it next Wed to his school for open house, our town just built a new Junior High School for grades 6 thru 8th and Nathan wants Rich to especially see their new Band room and uniforms and his locker this is the first year he will have a locker(I guess it’s a big deal to have a locker!) I’m praying he will at least feel up to the tour and then I’ll take him home and I’ll go back up for all the meetings and putting school supplies away.
Have a good weekend everyone not to many summer days left and snow will be here soon for us.
Thanks Mary for answering. So today Mayo called and said his liver numbers where to high to start a trial and his condition to weak to do a biopsy that he should stay home and enjoy time with the family. We spoke to Hospice today and tomorrow we will speak to someone from Palliative Care not really sure of the difference between the two but maybe after tomorrow I will. They took another 4 liters off his stomach so they are talking about putting in a drain so I can just drain it at home. Things seem to be going down hill fast now, wasn’t prepared for how quickly his health has deteriorated. Even though we’ve known how bad this type of cancer is you keep thinking there will be something new coming out that could help.
Of course the hardest part is our son having to witness his Dad getting sicker each day and saying to me that I have to find a Dr that will help him or another trial and me telling him his Dad just isn’t strong enough to continue that everything that could be done just hasn’t worked. It hurts to hear my husband say that he won’t be able to see our son grow up and help him to become a strong and caring man and that we only got to have 34 years of marriage and not the 50 years that we always talked about. A lot to take in a once.
Since doing the wash out period from this trial Rich has been having a hard time. Yesterday he went in to have the ascites drained from his stomach, they could only get 2 liters off because the tube kept getting clogged so they said we’ll be seeing you in a few days to try to get the rest. This fluid was very painful for him with his stomach so extended. I had noticed for like the last 4 to 5 days he seemed a little confused, after coming home from getting the ascites drained he was REALLY confused, talking like he was having a conversation with someone, acting like he was hammering something, dropping his glasses of milk and juice then he started to fall one time he hit the oven, the other he was standing up and just fell backwards hitting his head on our ceramic floor in the kitchen, that one left a huge goose egg on his head, he was up all night walking around talking. Took him to the ER today and they admitted him did a CT Scan and nothing wrong with his head from falling but, his ammonia levels where 3 times to high, I was thinking that might be the problem but, at times he was lucid so I thought he could be the morphine they just put him on.
He is so mad at me now for taking him to the ER. They have him in a bed with a alarm and will have a CNA sit in his room all night. Bad thing is tomorrow we were suppose to be going to Mayo for the new lung and liver biopsy and start the TAS102 trial. I’m not even sure he could go on the trial now because as of this morning his eyes and skin are yellow. He has lost like 50 pounds in the last 2 months, his collar bones are sticking out his legs look like toothpicks and his once muscular arms are smaller than our 11 year olds. He’s wasting away before our eyes.
So it gets me to wondering if he should even try another trial, as I look back over the last year and half with all the chemo and 2 clinical trials was it all worth it? Yes it gave us time together they said he had 3 months to live but, each one of these treatments had such horrible side effects for him that he was in pain most of the time and to weak to do the things he liked he spent most of that time drugged up to control the pain and slept a lot. Would it of been better to take no treatments and have a few great months than do them and feel like shit for a year and half? The doctor asked me tonight what our plans were going forward and I said the trial and he said there are doctors who will always have a treatment for you but when is enough-enough? Not sure what I’m gonna do about that statement part of me says I can’t stand to see him in pain anymore but another part says I can’t stand to lose him. He has said right from the beginning he will do whatever I want so, if I say to him it’s been “enough” isn’t that just saying I don’t want you anymore, I have no more hope for you? I think it’s gonna be a long week.
Rich was given Gabapentin for his and it seems to help. It’s for seizures and nerve pain. They said it could make you sleepy but he never experienced that, takes in the morning and was never sleepy afterwards. Talk to your doctor about it maybe it could help you to.
Rich has been taken off this trial. Recent scans showed new growth in a vertebrae, lymph nodes around his heart and the lining of his stomach also some new ones in his lungs and on the liver, but the original tumors on his liver and in his lungs still shrunk. So his doctors at Mayo want him to start a new trial TAS102 after a 3 week wash-out period, but before he does this they want a biopsy of the new ones in his lungs and on the liver. They will send those to Tempus Labs he already had a liver tumor biopsy sent to Foundation One which found the FGFR mutation. The doctors said this lab(Tempus) test for more mutations and for new immunotherapy drugs than Foundation One does, also they will be testing new drugs on the tumor biopsy itself at their Mayo lab. Doctors are thinking maybe these new tumors have a different mutation than the FGFR since the original tumors still shrunk and these grew.
I am worried about the lung biopsy because people have said it hurt a lot, he’s never a had one before because the tumors he’s had before were too small to biopsy but these new ones are big enough.
These scans results came as a shock to us he has been feeling good even working in his shop restoring a car for our son to have when he turns 16. Hoping the next 3 weeks aren’t hard on him, whenever he’s not on a treatment he gets so sick and in so much pain quickly that I worry by the time the 3 weeks are up he’ll be in no shape to start a new trial.
Thanks Gavin for the article, I hope I can get Rich to read this and maybe then he’ll agree to talk to some others who have this horrible cancer. I know being able to talk to others either here or other sites has helped me a lot in understanding treatment options and handling emotions to, just can’t seem to get him to open up and talk about things, I know he doesn’t want to upset me so that’s why I think talking to someone who has this to would help him immensely. Thanks again!
Sorry to hear that you had progression on the chemo after going through all of it. My husband Rich has the FGFR2 mutation and has been on 2 different trials for it. The first one was INCB054828 he was on this one for 9 months and he is now on the TAS120 for 5 months. With both he has had loss of finger/toe nails, hand and foot syndrome, dry mouth, high phosphorus levels (he took medicine for this) and severe bone/joint pain. The INCB trial they had to lower the dose because of the pain and the next month’s CT Scan showed growth so he was taken off it and the TAS120 he had a week break last month with a dose reduction and as of today he is on another week break because of the pain. With both he did have shrinkage of his tumors on the liver and the lungs, just when they lowered the dose there was always growth then. Of course this is him and you may not have these side effects, there are other people on both of these trials and they have not experienced these side effects, everyone is different even though they all have the same mutation.
I wish you luck with whatever trial you pick, my husband has said even though he had pain with each of these trials it was way easier than going through chemo, they gave him 3 months and with these trials it’s now been 18 months so they were worth their weight in gold in giving us more time.
I know that the Nestle’s compleat is for tube feeding but did you ever taste it? Was wondering if this could be taken by mouth also, as long as it didn’t taste horrible.
Rich is back on the trial now after his week break. They reduced the drug to 16mg from 20mg. The bone pain and his hands are better and all labs today came back fine. The only thing is he lost 16 pounds in just a week, the Dr said some of it could have been water weight. He says food doesn’t taste right, either too salty, or like vinegar, I made him a chocolate malt and he said that tasted like dirt. This is the first time he has ever lost weight, he didn’t on the other trial or even while he was chemo, so it’s got me worried that something else might be going on. Will have to look into the recipe books this weekend to find something he’ll eat. Hope everyone has a good weekend and Happy Mother’s Day to all the moms out there!
Thanks Mary for the idea about the numbing cream will give it a try.
They said the bone pain is coming from the phos levels being so high, he had a scan so we do know for sure that nothing has gone to the bones and that was a relief. Hoping this break will get everything settled down and he can start again!
Not sure I would be liking that 90 degree weather!
Rich went to Mayo again today for his check-up and they have put him on a 1 week break. His phos levels, creatine and alk phosphatase are way to high. They said after the week break if everything is back to normal they will reduce the drug from 20mg to 16mg.
He is in so much pain now with a lot of bone pain and the hand and foot syndrome has gotten so much worse. He’s been using all sorts of creams and wearing socks and gloves to bed with the creams on but, nothing seems to get ahead of it, his finger tips look as if they have been burnt off and very painful.
They also talked to him about how much muscle mass he has lost, he says everything tastes too salty or sour. Doesn’t want to eat anymore, has a few mouth sores but the Drs think with the dose reduction they should go away quickly. Wish I could find something that really tastes good to him, hard to make meals for someone who has no interest in eating and I’m a good cook (or that’s what he’s told me the last 35 years of marriage) all the foods he’s liked before now make his stomach turn.
At least spring is finally here and we can start planting our garden maybe home grown fresh veggies will entice his appetite.
Rich had his first scan since starting this trial on 3-1-18, the scan came back with great results-tumors on the liver and in the lungs have all shrunk! Once again he is having the same side effects as he did on the INCB trial-a lot of joint pain and hand and foot syndrome. His doctor gave him some pain meds for the joint pain and said hopefully as the trial continues and his body gets used to the drug maybe some of this joint pain will go away. He didn’t want to do a dose reduction yet until his next scan and then maybe he’ll be down to the 16mg instead of the 20mg. So far so good considering his other doctor gave him 3 months and it’s been 16 months since being diagnosed-boy it’s been a long and busy 16 months!!! Hope everyone else is doing well on their treatments! Have a good weekend- we are expecting snow again here this weekend- can’t wait for spring to really be here, I think the sunshine and warm weather will do us all good.
Rich has been taken off the trial, after a 2 week break and a dose reduction his scan this week showed tumor growth and 2 new spots on his liver. We are now going to Mayo for the TAS120 trial and pray that one will work longer and have less side effects.
Wish everyone on this trial the best of luck.