Pancreatic cancer
gwen66
Comments
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discussion board
HI Gwen66... I talk to many on the Johns hopkins web site. Its a discussion board that MANY participate on. http://pathology.jhu.edu/pancreas/0 -
PANCREATIC CANCER
Hi, Hope you have been and are doing well today. My husband who has pancreatic cancer hasn't been feeling well enough to respond. He had a rough week but today was able to go kayaking with our 17 year old daughter for 2 hours. He has been alseep since he came home and has not eaten anything. He has lost 25 lbs. He experienced the most excrutiating new pain yesterday, he was doubled over for about 2 minutes. We will have to ask the oncologist about that. The oncologist never really seems to concerned about his pain or discomfort. We have talked to him about a nerve block which I think is something he should try. I know it doesn't last, but if it would help so he could have a few good days in a row that would be great. Sometimes he says he feels he wants to crawl out of his skin. Is this normal for pancreatic patients to be in such misery all the time. It is really hard for him and me to live with and for me to watch. Ever since you posted I have been thinking of you and wondered how your doing. Take care and good thoughts to you. Janis0 -
From One CareGiver To AnotherPURPLECANCER said:PANCREATIC CANCER
Hi, Hope you have been and are doing well today. My husband who has pancreatic cancer hasn't been feeling well enough to respond. He had a rough week but today was able to go kayaking with our 17 year old daughter for 2 hours. He has been alseep since he came home and has not eaten anything. He has lost 25 lbs. He experienced the most excrutiating new pain yesterday, he was doubled over for about 2 minutes. We will have to ask the oncologist about that. The oncologist never really seems to concerned about his pain or discomfort. We have talked to him about a nerve block which I think is something he should try. I know it doesn't last, but if it would help so he could have a few good days in a row that would be great. Sometimes he says he feels he wants to crawl out of his skin. Is this normal for pancreatic patients to be in such misery all the time. It is really hard for him and me to live with and for me to watch. Ever since you posted I have been thinking of you and wondered how your doing. Take care and good thoughts to you. Janis
I am so happy to stumble across this post. I thought I was the only Caregiver who's husband has Pancreatic Cancer. My husband too seems to be in misery most of the time but he doesn't like to tell me because I worry. He was diagnosed Feb of this year, and just finished his 10th chemo treatment, now we wait for the scan to be scheduled and to see whats what. The last scan before he started chemo showed his tumor went from 2.5cm to 7cm in a matter of 2months, This is all very scary to us. He had to have his 3rd blood transfusion on Tuesday 3pints instead of 2, is nauseated, swelled feet and just feels horrible. Most of the time I cry or feel extremely guilty because I'm not sure what I am doing for him is the right thing or not.
And I know what you mean by being hard to watch them in pain and I know with my own husband he went from 180lbs and is now down to 135lbs, I tear up everytime I help him get dressed because I know he is embarrassed about his body now and he used to be in such wonderful physical shape. Thanks again for your post it gave me hope that I'm not alone.
Pam0 -
Husband with Pancreatic Cancer1chron1611 said:From One CareGiver To Another
I am so happy to stumble across this post. I thought I was the only Caregiver who's husband has Pancreatic Cancer. My husband too seems to be in misery most of the time but he doesn't like to tell me because I worry. He was diagnosed Feb of this year, and just finished his 10th chemo treatment, now we wait for the scan to be scheduled and to see whats what. The last scan before he started chemo showed his tumor went from 2.5cm to 7cm in a matter of 2months, This is all very scary to us. He had to have his 3rd blood transfusion on Tuesday 3pints instead of 2, is nauseated, swelled feet and just feels horrible. Most of the time I cry or feel extremely guilty because I'm not sure what I am doing for him is the right thing or not.
And I know what you mean by being hard to watch them in pain and I know with my own husband he went from 180lbs and is now down to 135lbs, I tear up everytime I help him get dressed because I know he is embarrassed about his body now and he used to be in such wonderful physical shape. Thanks again for your post it gave me hope that I'm not alone.
Pam
Dear Pam - I too have a husband with pancreatic cancer. He was just dianosed in May 09 and had his first chemo treatment this past Tuesday. He feels so bad this week...throwing up, diarrhea. He's just laying on the couch. He can't eat anything and feels horrible. I too don't know what to do to ease his discomfort. I've been trying to be supportive and offer him many things to help him feel comfortable, but they usually don't work. I just went and bought him baby food today so that maybe he could keep that down. He too lost a lot of weight the past two months. He now weights about 130 lbs and is 5'8". He started out at about 160 lbs. I'm so worried because he just had his first chemo treatment and feels this bad, what will happen down the road? Does it get better or worse? they said most people don't get the nausea, but he has it big time. He also broke out in a rash all over his chest. Now I heard that would happen and that's "good" because it means the chemo is working. (I read the worse the rash, the better, cause it means it's working. I heard if you don't get a rash it means it's not working. Have you heard that too?) Any answers you could give me would be greatly appreciated. This is the first letter I've written to anyone on here. Thanks so much for any help you can give me. Gail0 -
chemogail l k said:Husband with Pancreatic Cancer
Dear Pam - I too have a husband with pancreatic cancer. He was just dianosed in May 09 and had his first chemo treatment this past Tuesday. He feels so bad this week...throwing up, diarrhea. He's just laying on the couch. He can't eat anything and feels horrible. I too don't know what to do to ease his discomfort. I've been trying to be supportive and offer him many things to help him feel comfortable, but they usually don't work. I just went and bought him baby food today so that maybe he could keep that down. He too lost a lot of weight the past two months. He now weights about 130 lbs and is 5'8". He started out at about 160 lbs. I'm so worried because he just had his first chemo treatment and feels this bad, what will happen down the road? Does it get better or worse? they said most people don't get the nausea, but he has it big time. He also broke out in a rash all over his chest. Now I heard that would happen and that's "good" because it means the chemo is working. (I read the worse the rash, the better, cause it means it's working. I heard if you don't get a rash it means it's not working. Have you heard that too?) Any answers you could give me would be greatly appreciated. This is the first letter I've written to anyone on here. Thanks so much for any help you can give me. Gail
My husband just had his second chemo treatment. They gave him anti nausea drugs in his IV before beginning chemo. They also gave him a prescription, but he hasn't had to take it for nausea. He does, however, have the rash. He is using creams on the rash and taking a benadryl for the itch. You should call the doctor and get him some medication so he will feel better. Nancy J0 -
Compare notes
Gwen,
I had stage 3 pancreatic cancer and also had a whipple ( this was done Sept 2008 ) along with chemo and radiation before the whipple. Then had chemo after also. With the LORD'S help and a lot of prayers from family and friends I'm doing better If you want to compare notes. Just let me know.
Wishing you GOD'S speed in your recovery
Oneshot0 -
No fun!
I had gall bladder surgery March, 2009
Doctor saw an obstruction near bile duct.
After many weeks of testing at UVA found
I had a tumor in pancreas that was cancer.
Had whipple at John Hopkins May 18th, then
had stomach infection and went back to Hopkins
for 8 more days. Now I am having radation
and chemo, 5 days week for 5 weeks. I just
had day 5. Chem and radation are suspose
to double our chance (whatever our chance was).
b6160 -
after the Whippleb616 said:No fun!
I had gall bladder surgery March, 2009
Doctor saw an obstruction near bile duct.
After many weeks of testing at UVA found
I had a tumor in pancreas that was cancer.
Had whipple at John Hopkins May 18th, then
had stomach infection and went back to Hopkins
for 8 more days. Now I am having radation
and chemo, 5 days week for 5 weeks. I just
had day 5. Chem and radation are suspose
to double our chance (whatever our chance was).
b616
My husband had his Whipple April 29, 2009. He just finished his 3rd dose of Gemzar (once a week), will have a week off, and then start radiation with a different chemo for about 6 weeks. This is considered adjuvant therapy to help prevent the cancer from returning. This cancer is such a beast! I sure hope all of this treatment makes a difference for both of you. If you read the Johns Hopkins pancreatic cancer discussion board, you'll read about lots of people who did well and are still alive after 5 and 10 years. There is always hope. Len's CAT was clear and his CA19 count was low when recently tested. I guess we'll all keep holding our breath every time tests are done. Wishing you well on your road to recovery. Nancy J0 -
Comments from a newcomer>gail l k said:Husband with Pancreatic Cancer
Dear Pam - I too have a husband with pancreatic cancer. He was just dianosed in May 09 and had his first chemo treatment this past Tuesday. He feels so bad this week...throwing up, diarrhea. He's just laying on the couch. He can't eat anything and feels horrible. I too don't know what to do to ease his discomfort. I've been trying to be supportive and offer him many things to help him feel comfortable, but they usually don't work. I just went and bought him baby food today so that maybe he could keep that down. He too lost a lot of weight the past two months. He now weights about 130 lbs and is 5'8". He started out at about 160 lbs. I'm so worried because he just had his first chemo treatment and feels this bad, what will happen down the road? Does it get better or worse? they said most people don't get the nausea, but he has it big time. He also broke out in a rash all over his chest. Now I heard that would happen and that's "good" because it means the chemo is working. (I read the worse the rash, the better, cause it means it's working. I heard if you don't get a rash it means it's not working. Have you heard that too?) Any answers you could give me would be greatly appreciated. This is the first letter I've written to anyone on here. Thanks so much for any help you can give me. Gail
Gail and Pam.
I am one of those husbands with pancreatic cancer. My wife successfully beat breast cancer, and has been clean for about 3 years now. Now she gets to watch me, and lend encouragement. She didn't have to have chemo, just surgery and radiation, so we have no first hand experience with chemo. That will probably change within a couple of weeks. I had chronic pancreatitis for 7 years, and have been on disability retirement almost that long. I take morphine slow release for baseline pain management, and oxycodone for breakthrough pain. If your doctor isn't helping your husbands deal with the pain, twist their arms ( the doctor's arms) or get a nother doctor to handle the pain meds. Luckily, my primary care physician has helped me through the chronic pancreatitis, and will deal with pain meds as I need them. Most recently I started having to deal with severe diahrea (pardon if I misspell that word). I have finally gotten a formula that works for me. I take 6 or 8 imodium per day, two at a time. I also take large quantities of Pepto Bismal. I use about 32 ounces of pepto a week, or the equivalent in pepto tablets or capsules. Now I seldome experience diahrea, and am hoping that this will continue to work during chemo if needed. I also experienced nausea and vomiting early on with the pancreatitis, and used compazine to reduce the nausea. It was pretty effective, but I don't have the problem any more, and I don't know whether it will be effective should the chemo produce nausea/vomiting. I keep my fingers crossed ( and say a few prayers too) that I won't have to find a solution to nausea, etc. But will certainly hound my doctors should I be troubled by it. The squeaky wheel and all that... But if you don't let them know you are BOTHERED, they probably won't search for a solution for you for the side effects. They are very interested in shrinking the tumors, but perhaps not so interested in treating the side effects if you don't let them know just how important they are to you.
God bless both of you for helping your husbands, May God keep you and them in the palm of his hand. I also have found that I am getting a little religion again. So for what good it will do, my prayers are with you all.0 -
Pancreatic newcomer
Got my diagnosis just before July 4th. Have had a number of scans/tests since then. It seems to be a little bit of hurry up and wait. Haven't gotten in to see my oncologist yet. The surgeon has told me I am inoperable, and a recent PET scan seems to indicate that the cancer has spread to the kidney. Wouldn't mind sharing experiences with others in this group.
Relative to itching, I have had itching b ig time, but it wasnt due to chemo, since I haven't started that yet. Turns out the tumor closed off the liver, so it wouldn't drain. That was the cause of the itching. All for now, dinner is waiting. Looking forward to hearing from anyone out there.0 -
worried
Hi Gwen
My Husband has stage 2 and a whipple ( June 09 ). He just got his second chemo treatment. First one went good, but second one left him on the sofa with no energy. I feel so helpless and I'm always worried. He had a fever and war in the hospital. All tests could not find any reason why so they send him home. Now I don't know what do do, call the doctor or not.0 -
Gwen, How did recoup after
Gwen, How did recoup after the whipple procedure? I am a caregiver for my husband , he had the procedure done 3 weeks ago. Where you able o sleep at night? What about food after the surgery? They didnot give us much information about that.Thanks0 -
Hi ulli, If you hvae anyulli said:worried
Hi Gwen
My Husband has stage 2 and a whipple ( June 09 ). He just got his second chemo treatment. First one went good, but second one left him on the sofa with no energy. I feel so helpless and I'm always worried. He had a fever and war in the hospital. All tests could not find any reason why so they send him home. Now I don't know what do do, call the doctor or not.
Hi ulli, If you hvae any suggestions please let me know. Like sleeping and food . Thanks My husband had the surgery 3 weeks ago . How long till your husband felt better??When did they start chemo right after surgery?? I have lots of questions Feel lost thanks the wife0 -
ItchingTim_PM said:Pancreatic newcomer
Got my diagnosis just before July 4th. Have had a number of scans/tests since then. It seems to be a little bit of hurry up and wait. Haven't gotten in to see my oncologist yet. The surgeon has told me I am inoperable, and a recent PET scan seems to indicate that the cancer has spread to the kidney. Wouldn't mind sharing experiences with others in this group.
Relative to itching, I have had itching b ig time, but it wasnt due to chemo, since I haven't started that yet. Turns out the tumor closed off the liver, so it wouldn't drain. That was the cause of the itching. All for now, dinner is waiting. Looking forward to hearing from anyone out there.
Tim my husband had the same probelm with itching. He itch till they were scabs. the dr. put him in the hospital to give him mass doses of benadryl. Then the put a stent in his bile duct to drain the fluid it took 4 days to stop itching then.same the tumor was smashing the ducts. He had the whipple procedure but a atery was wraped around the tumor.
So i still have many questions wife220 -
Itchingwife22 said:Itching
Tim my husband had the same probelm with itching. He itch till they were scabs. the dr. put him in the hospital to give him mass doses of benadryl. Then the put a stent in his bile duct to drain the fluid it took 4 days to stop itching then.same the tumor was smashing the ducts. He had the whipple procedure but a atery was wraped around the tumor.
So i still have many questions wife22
Wife22
There were some people that reported itching as a side effect of chemo, and so I went into it with a certain amount of trepidation. Luckily, I have had no significant itching since the stent took effect, and none related to the chemo that I can detect. I am on week 2 of Gemzar combined with a trial drug, and am having no noticable side effects yet. The doc that placed the stent said that the itching would go away gradually, the longer the duct was blocked before the stent was placed, the longer until the itching would completely disappear. So, the itching did continue noticably for a few days, but it did reduce in intensity fairly quickly. In the latter days, there was still improvement, but it wasn't as significant, because most of the itching had gone away. I think also, I may have developed a tolerance for some level of itching, and so even if it wasn't completely gone, I found the level quite tolerable (sleep was wonderful!) compared to before the stent. Best wishes, and many prayers for your husband and yourself. Some of us (even with stage 4 cancer) get lucky?? and get a couple more years to put our lives in order and make memories for those we will leave behind. May your husband be one of those. Again, care and prayers for you and your loved ones.0 -
whipplewife22 said:Gwen, How did recoup after
Gwen, How did recoup after the whipple procedure? I am a caregiver for my husband , he had the procedure done 3 weeks ago. Where you able o sleep at night? What about food after the surgery? They didnot give us much information about that.Thanks
Had my whipple in january found eating a real problem till i got enzymes now am almost normal so long as i have my enzmes with every thing i eat. Another thing you may be interested in was that just recently i suffered an incisional hernia which till i have it repaired i am wearing what i guess you would call a girdle. Its made of wetsuit rubber that i wrap round my stomach abd it holds the hernia in place but one of the side benifits is that it holds my whipple surgery site,now i am not sure what it is whether its the extra heat or the way it holds the damaged stomach mussells but I have not felt this good in the tummy region since the whipple. Hard to descibe how much better i feel while wearing it was only cheap from the chemist anyway thought you may like to know good luck to you and yours.0 -
Ulli and Wife 22wife22 said:Gwen, How did recoup after
Gwen, How did recoup after the whipple procedure? I am a caregiver for my husband , he had the procedure done 3 weeks ago. Where you able o sleep at night? What about food after the surgery? They didnot give us much information about that.Thanks
Hope I can shed some light into some of the questions both of you have. I'm no expert by no means, but I have a wonderful wife who took care of me. She was in the same boat you both are in. I watched her go through the same roller coaster of emotions and down right frustrations you both mention. The first thing I can tell you is to write down and ask your doctors any and all questions you can think of. Just like you asked on this site. I say this because every case of pancreatic cancer surgery and it's recovery as well as chemo treatments and effects of chemo can vary from one patient to the next. My wife asked all the doctors involved as well as dietitions (sp) and nurses about what she could do or have me do after I had my surgery. She did this every visit! As good as your doctors may be remember, they are human also and sometimes just like us, they forget to cover or mention something.
Ulli asked about having fever after chemo. My doctor(s) gave me a page or two of instructions on what to do and possibly expect after chemo. On it it said if I had a fever over 100 degrees(I think) to call a certain number and go to the ER. The number was to get someone who could look up my info. for the ER folks. Remember when you go to the ER with a bad fever you make sure they know your husband is taking chemo.
Wife 22 you ask about a few things. Sleeping... not sure if it was for you or your husband you were asking about this for. I'll start with something that I had to do for several months after my whipple. I had to sleep propped up by pillows in a sitting position in bed. I could not lay flat without my wife's help to make it easy on my stomach muscles. This also made it to where I had to have her help getting back up. Turning on my side was not an option. As I'm sure your husband will tell you ..any and every movement, no matter how small. Is felt around the stomach area. Another option I did was to sleep in a recliner or a hard back chair with a pillow behind me. Eventually I was able to carefully move over to my right side while laying flat. (The left side had a port for chemo in it just below the coller bone).
Now if your asking about your sleep. Go to your own doctor and tell them what you are having to go through with your husbands condition. My wife was my caregiver and I can honestly say I think caregivers go though as much ,if not more emotional stress than us as cancer patients. My wife was afraid to burden me with her worries concerning my health as a loved one and caregiver. Always wanting to be possitive in front of me. Her doctor put her on both natural and precribed medications for anxiety and sleep for her. She doesn't have to take these anymore. It was just for a short time.
You also asked how long to regroup from surgery.. I was up and moving with stomach pain and a lot of pain medication. My stamina was pretty low. But the deal was ..I wanted to get out of the hospital ASAP! So two days after surgery. I started walking. VERY VERY slow but it helped me to get out in five or six days! I went a whole month feeling better before I had to start another round of chemo. (think you asked about that also). I might add the chemo this time gave me almost every side effect chemo has to offer except for total hair loss. It depends on the person's shape after surgery on how long before they start chemo again or not. I mentioned before about being in bed for several months. The second round of chemo after the surgery had a lot to do with that.
As far as food..I'm lucky! I can eat most anything. I have to take enzymes and a couple of other pills with and after meals and snacks. I'll tell you this up front. Be prepared for your husband possibly being picky about what he wants to eat. I about drove my poor wife crazy for a few weeks maybe longer. Chemo might have had something to do with this. My wife tollerated my craving for biscuits and gravy every morning for a good while. So with that being said let him eat whatever he craves...he most likely needs to gain weight back as most of us with pc. do. Again and I can't stress this enough ask his doctors. They have a dietition ask them also! My dietition even gave me a cook book for people who have pc. or stomach cancer. It was free. They do suggest staying away from salads. But you husband will know from trial and error, what he can tolerate eating. I know this sounds rough but, have him check his stools for blood. One time I lost seven units of blood due to ulcers that could not be avoided do to radiation treatments I had done prior to my surgery. The ulcers didn't show up till I started my chemo after the surgery. I had to get transfusions several times. Once they found the ulcers, they were fixed and I haven't had a problem since. Again just let him eat whatever he can tolerate.
GOD BLESS You both for being a caregiver for your husbands and GOD'S SPEED in thier recovery.
Oneshot0 -
My GrandmaLindaNuc said:discussion board
HI Gwen66... I talk to many on the Johns hopkins web site. Its a discussion board that MANY participate on. http://pathology.jhu.edu/pancreas/
My Grandmother who just turned 80, who was more vibrant than most 20 some year olds I know, was diagnosed with Pancreatic Cancer in June. She has slowly been eaten away by the cancer and I've been experiencing what dying is. I live with my Grandma and I have been watching her die and whittle away to nothing. She doesn't eat, she only sleeps and parts of her essence have dissolved.
My heart would break everyday and I've cried so many tears that I think my body has just about run out. I know they're going to come again. She is in Hospice right now and she was given up to 48 hours. How do you cope with someone telling you someone you love only has that much time left?
I love her so much and I know it's not fair to not let her go. Part of me has accepted this but a major part of me truly believes this is all a really bad nightmare. I think she'll be here tomorrow or the next day with a big smile on her face when I wake up. We'll go to breakfast because she always loves doing that and talk about everything like we always do. She'll call me and wish me Happy Birthday in two months because I'm turning 25. My birthday is on Thanksgiving this year. We always have Thanksgiving together, just her and I.
What will I do without her? I won't be able to hold her and tell her how much I love her. I can't do any of it after this. Any of it.
I'm so angry and I'm so hurt because she had to go through this. She has been suffering for long with nausea, intense stomach and back pain, itching, rashes and weakness. She didn't deserve any of this. Nobody deserves this. I feel for any person going through cancer.
I never imagined this and couldn't imagine this but it's here and I'm scared. I'm scared because I know it's inevitable I'll be without her.0
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