tryingtohelp
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Thank you, ladies. Wanted to tell you about interesting experience last night. Around 9 pm we heard an awful noise and at first I thought it was vacuum that my 6 years old must have turned on. He claimed he didn’t and I discovered it was my husband’s coffee pot making all this noise – the built-in coffee grinder was on (no coffee beans there). I noticed that programming button was on and found out that my oldest actually saw it on earlier, but didn’t say anything. Well, I made a comment, that their dad wanted to make some coffee! My husband loved to drink a whole pot of coffee every morning – prior to his sickness. Lately he almost gave up coffee – since it didn’t taste right to him. Anyway, after thinking about it, I realized that it must have been the cleaning lady who stopped by earlier that day, that accidently pressed on programming button. Still it was quite interesting! No night lights last night. I think one excitement per night is enough!
Hi Lynn
I guess his doctor meant that for George his CA19.9 is not a good reference, if his numbers are in the normal range, yet he still has cc. There are patients for whom this test doesn’t work. If that’s the case, CT scan or MRI would be the only way to tell if chemo is working or not. Again – that’s my understanding.
About the confusion – need to keep an eye on it too and definitely inform your hospice. My husband had confusion issue the whole last week of his life. Sorry, not trying to scare you… But in his case – he almost didn’t have “normal” moments, once it started. For example – he’d tell me that we need to get up early to paint the rooms, or that he needs to feed the horses (that we don’t have, but he had over 17 years ago), or he would ask me who was standing next to his bed (nobody was). Yet, if you ask him some questions – he’ll answer most just fine, except if I ask him where he was. And he always knew us – never got confused about it.
But there could be few other reasons for confusion – high temperature, urinary tract infection or ammonia levels. Ask hospice to check it all. Also – did they change any pain meds recently or increased the dosage?
Hope this helps and feel better soon! SIncerely, AllaWelcome to this site, marinmommy
My husband also had constipation issue throughout his illness. Glycerin suppositories (Fleet) worked the best for him. Did they try suppositories or enemas? There are also suppositories to prevent vomiting (promethegan), that he can try.
Hope it works!
AllaHi Lynn
I’m not sure how often does his doctor checks cancer marker for George, but I would recommend checking it before next chemo. When my husband was in similar situation and we had to postpone the chemo – I just wish they checked cancer marker at that point anyway. They gave him last chemo (we didn’t know it was going to be last one, of course) and checked cancer marker on the same day, only to find out that chemo wasn’t working already. So it only speeded up the passing and gave him more side effects to deal with. Just a word of advice… I’m sorry to be a “downer”, but after watching my husband suffer, it changes the perspective (quality over quantity). I do hope it’s not the case with George!!!
Sincerely, AllaVery beautiful!
On the day of my husband’ funeral, me and the family were sitting outside in the back yard and white butterfly flew right by us. I was thinking the same thing, that it was my hubby, “saying hi”. And last night his night light was on, when I came to bed, and nobody was upstairs. Of course I do have 2 cats, that might have turned it on by walking by, but they don’t usually do that… This night light is turned on by touching it. It will be first Thanksgiving without my husband, but 2 families had invited us, so now have a dilemma of choosing! Hope it’d be a little easier, spending holiday with the friends.
Sincerely, AllaThanks to all that responded so far!
Here is the information about my husband who recently passed away.
P.S. I added jaundice and second opinion and some other questions as well.Age: 65
Gender: Male
Age when diagnosed: 64
Diagnosis and Stage: CC (Klatskin) and Pancreatic cancer stage IV, metastasized – omentum mass size of a grapefruit, spots on liver and tail of pancreas
Jaundice: 2 weeks after diagnosis
Initial CA19.9: 12000
Lymph nodes involved? Not sure, nobody mentioned it
History of cancer? No
Resectable? No
Had surgery (with details if applicable)? not Whipple, but appendix removal – that’s what prompted diagnosis
Liver transplant? n/a
Hospital:
Oncologist:
Second opinion: Went to Duke to gastro-oncologist; he confirmed diagnosis and recomended the same type of chemo
In remission (currently or was)? No
Survived since diagnosis (years/months/weeks): almost a year (minus 8 days)
Chemo 1: Gem/Cis
Length (and/or number of treatments) of chemo 1: 6 months
CA19.9 trend during Chemo 1: 24000 -> 2900 -> 3200
Side effects Chemo 1: Nausea, pain, appetite loss, weight loss, tiredness
Chemo 2: Xeloda
Length (and/or number of treatments) of chemo 2: 5 weeks
CA19.9 trend during Chemo 2: went up
Side effects Chemo 2: Nausea, stomach cramps, constipation, weight loss, tiredness
Chemo 3: folfirinox
Length (and/or number of treatments) of chemo 3: 3 months
CA19.9 trend during Chemo 3: up to 11000, then down to 7800, then up to 12000
Side effects Chemo 3: Nausea, vomiting, neuropathy, pain, constipation, appetite loss, weight loss, tiredness
Advice for chemo: schedule IV fluids a week or so after the chemo – to avoid dehydration; go out to dinner on the day of the chemo; prevent constipation before it starts
Cyber knife? No
Radiation? No
CA19.9 trend during radiation: N/a
Chemoembolization? No
Radioembolization? No
Experimental treatments? Didn’t qualify – initially because of jaundice, then later was tested for specific gene – didn’t have it
Any other conventional treatments? No
Blood transfusion? Yes – improved blood count, but not feeling of well-being
Alternative treatment? No
Use of supplements? Tried Essiac tea in capsules while on chemo break in May (actually CA19.9 went up just slightly when he was taking it), Milk thistle, Kidney and bladder formula; few others, but he barely took those
Special diet? Replaced coffee with hot green tea; Ensure, protein drinks
Complications during treatments? Had kidney stones with placing urethra stent, that resulted in blood infection; In october 2012 – bowel obstruction
What worked for nausea (best)? Emend with Ativan in IV form
Biggest regret: Having last chemo on Oct 1 and finding out day later that cancer marker went up to 12000 and having bowel obstruction on day 3 after last chemo. Wish they tested CA19.9 before giving him chemo – since he was feeling bad non-stop
Best advice given to me: scheduling IV fluids after having chemo instead of waiting until dehydration starts
Best tip/idea/recommendation: Prepare will as soon as possible after diagnosis and discuss all final arrangements, regardless of patients’ condition. We didn’t talk about it and then it was too late!
What would you have done differently? A lot, unfortunately. 2 big ones (other than the ones mentioned earlier) – get the third opinion at John Hopkins and delaying chemo in July, until after we went on vacation. He wasn’t able to enjoy the cruise at all…
Current status: deceased (Oct 18, 2012)
Comments: Wish we would have asked oncologist, how much longer would he have with the last type of chemo (assuming that it works). Doc only told us that if he doesn’t have chemo, he won’t survive the fall, which sounded to us – longer with it. Well – he had this grueling chemo and didn’t survive this fall anyway. He suffered last month and a half tremendously. Now that I’m analyzing everything – he felt bad at least 70% of the time since the diagnosis and at least 90% bad during last 3 months.Thank you, ladies. First piano lesson went better than I expected. He had fun and wants to continue taking classes. For now, anyways… What surprised me the most – it was his idea to start taking piano lessons! Luckily my friend’s husband teaches private piano lessons (he was a music teacher in the past), so I thought he’ll take a first lesson, probably won’t like it and that’s be it. So far so good. We’ll see if he would like practicing every day! Lol. Last spring he wanted to take dance classes and liked it, but after the month of the classes, although he enjoyed it, he didn’t want to go back. So I’m thinking that he might last a month with piano lessons as well… Afterall he just turned 6 a month ago.
As usual, thanks for listening. Time to go to bed!Interesting, I was thinking about the same thing for couple of months and was going to start a new thread with the list of questions and answers… I’m applications analyst and therefore have a “need to analyze data”!
What would be the best location to start it though?
Thanks, AllaWork a little easier. Didn’t cry at work today – so it’s a progress! Went out with friends for dinner tonight (with the boys, of course), so that was nice too. My 6 years old had first piano lesson tonight as well, so staying busy…
You are very welcome. As far as I know – they were and would be using the website for the donation. Lainy – tried to download the brochures – Internet Explorer keeps bombing off. I’ll try it through google chrome next…
Hi Mandy
Wanted to give you a caregiver perspective. I was a caregiver for my husband, but I had to continue working. I tried to go to all doctors’ appointments (went to most), but I didn’t go to chemo appointments. And he didn’t really want me there anyway. Our friend usually took him to chemo appt. If I had to miss appointment and didn’t get clear answer from my husband – I would call his doctor and get information I needed. I had to take care of the children as well, so he understood that I was taking heavier load already. Please continue to inform your husband on your treatment. My guess is that he is probably overwhelmed with taking care of the kids. Please ask your family and friends to help you, as well as schedule the “date” just with 2 of you from time to time. Everybody is different, but usually my husband was feeling better on the day of the chemo or prior day. So if someone can watch kids for you when you are feeling better – you could reconnect and discuss any issues that you might have.
Wishing you best of luck! AllaThank you, ladies. I appreciate your advice and words of wisdom. Just found out that someone else in my youngest son’s school was discharged with hospice after 2 years of battling cancer and she has 2 sons in 2nd and 4th grade… So I’m guessing she is really young. Tried to reach her husband, but he didn’t return my call yet. Not sure if I should call more or not. I have some sealed protein drinks and was going to offer those to them. I’ll probably call one more time…
Unrelated – forgot to mention that there should have been few donations in honor of my husband Marty Sanders to the cc foundation and more to come soon from my son’s marching band’ parents… Have no idea on the amount, but I’m sure anything would be helpful!
Alla
