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June 9, 2013 at 9:51 pm #21359Steph13Participant
Hi. I am new on this forum and I understand how everyone here feels. What I find most amazing is how different each patient is and how they react to everything. Yet again, I am coming in with a new twist.
My father is 74 years old, he was complaining about his stomach for months around Christmas time but everything checked out. In February, he was brought to the ER, had failing kidneys and they found his abdomen inundated with lots of tumors. At the end of February, he was diagnosed with Metastatic Melanoma, stage 4 with months to live, 4-6 maybe. He also tested negative for the Braf mutation also. Well, we just hit month 3.
My father has been dealing with Gout for years and had always been put on steroids which, in my opinion, has covered up the melanoma cancer. He has lost 30 pounds and is pretty much skin and bones, very little muscle, very weak and fragile. Eating has been one of the biggest issues; food just didn’t sound good at all, taste good, wrong texture, taste, smell, whatever – it just was not good. Then one day it would be – you never know.
We are currently waiting to begin the PD1 trial at UCSF, however we have a MRI on June 11th to determine if the cancer has gone to his brain, if it has he will be disqualified. We got him off the steroids in order to begin the trial. However the steroids are the only drug that actually helped him with his Gout flare ups. So we got him on the Indomethacine but gave him ulcers, so we stopped. His other gout drugs, allopurinal and Cocholcine, do not do anything for him and he gets bouts of diarrhea.
Unfortunately, he has been bed ridden since last Thursday 6th due to a major gout flare up and has not been able to get out of bed since. I had to call the Fire department to help me get him to the car because we had to take him to the ER for pain and make sure he didn’t have any blood clots. Everything checked out. To date, he is still in pain, can not get out of bed or put very much weight on his leg, and is just wasting away. He is just skin and bones – literally.
I do not know if it is the gout killing him or the cancer at this point or if they are both in it together. If it weren’t for the PD1 trial coming up I would put him back on steroids, but he won’t take them anyway – well maybe. I just need him to get out of bed. The more he stays there the more he becomes weaker. We have the MRI in 2 days and I am praying he can walk.
I have support, but at the same time I feel very alone, sad, and defeated. I have tried everything, read everything – I guess I just do not know how much time left I have. This is really an ugly cancer and very frustrating. I send prayers, love and strength to all of us dealing with it.June 10, 2013 at 3:27 am #61263dkmcParticipant
I hope he is able to get on just good old pain meds at this point. I hope the MRI is good news instead of all the very bad news that has been thrown at you & your family. You have had to “get up to speed” so to speak really, really fast. It took me some time to find this forum & get myself educated…you are way ahead of the curve. I will say my prayers that he will be able to get on the anti PD1 trial & have a shot at getting at this cancer. I will also pray that he finds himself more comfortable. Gout is tough & all the usual treatments are on hold for now so that complicates everything. Take care…big decisions to be made & it is hard. You are not alone. KarenJune 12, 2013 at 12:30 am #61264tasjacquesParticipant Hi Steph,
I understand your feelings. It’s frustrating and feel impotent to not have anything to give them to feel better.
My husband has the same issues that your dad has, MM IV and gout.
I will say hang in there, and pray pray pray, it has been the only thing that keeps me going and bring peace to my heart.
And as your dad, my husband complains of things tasting awful, or no taste, or too much taste, to hot, to spicy, etc it is not the food but I believe their taste buts that keep changing on them by the hour, literally. He explains me that sometimes the water feels delicious and then it will taste awful. So my cooking changes all the time, never same flavor … I have learned to cook lots of exoting things lately. And also I keep changing the fluids, apple juice, ensure, smoothies, mango juice, water, lemonade etc just to make sure he keeps on drinking. Soups are one thing he likes the most, and before he did not!
I hope the gout attack on your father goes away pretty soon, so he can get up and built strength again.
Couple of things that has help is to keep the cancer pain (yes! Cancer hurts!) under control, our Onco recommended morphine, and if too much oxicodone (this doc is from the trial we are on), and also ensure to keep vitamins and things up.
I also pray for your dads MRI to be clean so he can get in PD 1 trial.
Keeping you in my mind and prayers. Take care!July 31, 2013 at 4:24 am #61265FguzmanParticipant
I Wish you strength and fortitude!.
my husband is 55 years old, with melanoma stage IV and lately we have the same issues with food. melanoma is in his liver and causes his appetite to be so poor.
He is so fatigued and sleeps most of the day. He was on MK-3475, but brain mets disqualified him.
now he is going for gamma knife tomorrow.
my best to you and your dad.
frannyAugust 3, 2013 at 8:49 am #61266tasjacquesParticipant
How is your dad doing? I hope he was able to gain strength and get into PD1 trial. Keep us posted.
My husband is doing much better, PD1 is truly helping a lot. The tumor on his arm has clearly shrink, but we have to wait still till then end of the month for scans to know how much.
And curiously the gout attacks stopped, his last big one was the day we had to travel for the trial. I’m so glad they have not come back.
We keep it a day at time, pray and love.
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