(167 replies, posted in General Discussion)

Dear Pam
I was also following your blog and deeply sorry for your loss. This cancer is so unbelievably cruel and offers so little hope. I was really hoping that Lauren would be one of the exceptions.
Thinking of you and your family, Alla


(3 replies, posted in Grief Management)

Thank you, ladies, for your replies. What a beautiful story, Clare! Interesting, that most of our balloons got stuck in a trees above the grave and I was kind of upset about it. You gave me a different point of view, thank you!
Marion, I was thinking about this year Father's day and was even tempted to avoid celebration, afraid it might hurt them more and if I don't make a fuss about it - they might not even notice it...
Sadly, they pretty much ignored Mother's day, so they will not notice father's day if I don't say anything. Not sure, kind of torn about it now!


(3 replies, posted in Grief Management)

Hello everyone
It's been a while since my last post and 7 months since my husband passed away. Just wanted to check in and let you all know that we are ok. Hard to believe it's been that long! The boys are keeping me busy, as well as work. Still have bouts of sadness that come unexpectedly. Boys barely talk about their dad, which surprises me. Sometimes I ask them a question or 2, but they never initiate that subject.
Now that it's warm, my 15 years old has to mow the lawn, which he is not happy about. I had reminded him that my responsibilities had widened as well and that's just the way it has to be.
Wanted to mention something unusual. During my husband' funeral back in October, I had white balloons for kids to write their wishes for their dad and release those in the air. Surprisingly, my youngest said he didn't want to do it and wanted to keep those balloons. Well, here is unusual part - both balloons are still inflated - 7 months later! Smaller, but still intact. Little miracle!
Just wanted to share this experience!
Sincerely, Alla


(13 replies, posted in General Discussion)

Deane, I'm so sorry for your loss. I see that we are almost neighbours, so if you ever want to talk - please send me a private message. I lost my husband to cc back in October.
Sincerely, Alla

So great to read about such a great news! So happy for you (not the hospital part, of course). When my husband had treatments, he found that having half a bag of fluids right after chemo and then fluids about a week after made a huge difference and prevented dehydration. As well as sipping some water or tea during chemo. Hope it helps.
Sincerely, Alla


(23 replies, posted in Grief Management)

Dear Lynn
I'm in exactly the same situation. My husband had passed away mid october and last week of his life keeps replaying in my mind as well, especially his last day, as it was the most gruesome. Just last night saw a dream with him and he was sick in my dream as well. I had read that eventually memories will be of a happier times, as well as dreams about him, but it hadn't so far. Please know that you are not alone.
It's been 2.5 months since his passing and some days are better than others. It seems that I get better handle of situation and then phone call from some old friend or customer, who didn't know about his passing and I fall apart again. But overall I think I'm handling it better than I expected. Sorry to talk about me, but my point is that many of us had similar thoughts and feelings, that are normal, and hopefully it will slowly improve for all of us! Sincerely, Alla


(7 replies, posted in Introductions!)

Hi, Deane
Looks like we are almost neighbours. Wanted to say welcome. My husband had CC and we went to Duke for second opinion - and Duke would be a lot closer to you. They might offer your mom some experimental trial, if she qualifies. Good luck!

So glad you were able to enjoy the restaurant and memories! Thinking of you.


(82 replies, posted in Introductions!)

Dear lovedad
Your story sounds very familiar, as my husband also had jaundice after diagnosis and they were able to put only one stent in and were not successful with the second. In his situation - once he started chemo - chemo actually took care of jaundice problem, which what doctors were hoping for. Don't be alarmed that he stays yellow for a while. Do ask for copies of his tests and see how his bilirubin changes. If it is dropping each time - he is on the right track.
Hope it gets better!
Sincerely, Alla

Thank you, Eli. I didn't even notice it!

Thank you so much for advices and links. 'Missing U' - this link http://www.beliefnet.com/Health/Health- … rent.aspx.  didn't work for me, unfortunately. Please let me know, which section is it located under - in www.beliefnet.com
I appreciate it!

Thank you, ladies. Unfortunately, we don't have any family here. The only person I can think of, that my son can talk to - is my step-son. But that can be only by the phone. I'll have my own therapy session in couple of weeks and will discuss both of my kids grieving situations - both have completely opposite reaction, but the ages are far apart too. I tried to give both kids special booklets from hospice about grieveing - age appropriate, my 6 year old read his, but not 15 y.o.
Pam - at the time of my husband's cancer diagnosis, we did get closer with my older son and cried together, but later he also had some withdrawals. Once I told him in October that his dad's time on Earth is almost over - we cried together again, but since his passing, my son has been trying to be with friends as much as he can and not talking to me about it at all.
At high school they do have guidance counselor that I've been in contact with throughout the sickness, but again he doesn't want to talk about it with her as well.
Thanks for listening! Alla


(15 replies, posted in Grief Management)

Thank you all for good advices. Mary - did you resize just wedding ring or engagement ring as well? I'm thinking to do the same at some point...
Thanks, Alla

Hello to all
Just wondering of anyone has a teenager who lost mother or father and having tough time dealing with the loss. My older son is 15 and on Oct 18, 2012 we lost my husband/his father to cc. He doesn't show a lot of emotions and really not talking about the loss at all. But it seems that his priorities have changed and school is no longer seems important. He was always a good student (A/B) and now I'm having hard time getting through to him. All he wants to do is play video games, watch youtube and socialize with friends or his girlfriend. I understand that it is his way of dealing with the loss - entertain himself as much as possible, so he won't think of the loss, but I don't think it's a healthy way to grieve. I'm new to it as well and slowly learning. I suggested to take him to therapy session, which he declined.
Anybody had similar issues? Any suggestions? I appreciate it!
Sincerely, Alla


(8 replies, posted in Grief Management)

Thank you, Lainy. I need to start recording it, but hadn't so far. It seems with the rate it's going I'll "beat" your 55 visits soon! Lol. Just kidding... My 6 years old today told me that he saw his dad in a dream last night and that he wasn't sick. I've read from others that often we still dream about them being sick and for me it's been the case, except couple of times so far. I guess it's because I still relieve those last few days in my memory and a lot of those memories are not easy. Thinking about it before bed probably influences my dreams...


(8 replies, posted in Grief Management)

Well, just had another "visit". This time there is no logical explanation to it at all. My husband's van suddenly started signaling - like a "panic" signal. Me and the boys were inside, absolutely nobody is next to the van. At first I thought it was my car and grabbed my keys on the way out. But get this - by the time I stopped next to his van to see if it's unlocked (it was not - completely locked on both sides), it stopped beeping all by itself, but the front light was still blinking. Made absolutely no sense to me. I got his keys, unocked it, started the van (keep forgetting to periodically do that to avoid dead battery) and set there for a few minutes. Locked it again, come home and was telling it my 6 years old with a comment - "How is it possible?", and he just simply answered - "It's dad". Earlier today I was telling my mom about all prior visits and she tried to justify it all with - "cat did it" or "cleaning lady did it", which I can accept, except for when his night light was coming on almost every night, then stopped, then started again. Why wasn't it happening this often before his passing? Plus every time it's his night light, not mine. Well - with the car - I don't know how is it physically possible, especially that it stopped beeping by itself, while light was still blinking. May be he was reminding me to start the car? Anyway - all of it making believer out of me for sure!

Sounds wonderful! Congratulations!!!


(8 replies, posted in Grief Management)

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!


(8 replies, posted in Grief Management)

Hard to believe that today is exactly one month since my husband passed away. It's been busy month and still not everything taken care of. Interesting, that throughout his illness, I was saying that it's been a rollercoaster ride. Seems that it's still is - just different type of rollercoaster....
I've been reading the series of booklets about grieving stages and processes and it recommends to join a grieving group or write a journal, but for me, adressing people here who have been through it and in a way - writing about it - what helps the most.
Had few "visits" from him - mentioned few days ago, that his night light in the bedroom was on few days ago, and then it was on almost every night since. I do know that at least twice my 6 years old turned it on, but it happened at least 5 times.
I wish I had a hidden camera to see how it happens!
Thanks for listening, Alla


(14 replies, posted in General Discussion)

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, Alla


(11 replies, posted in Introductions!)

Welcome 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!


(14 replies, posted in General Discussion)

Hi 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, Alla


(6 replies, posted in In Remembrance)

Very 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, Alla

Thanks 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
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.

Hello everyone. I'm staring a new topic that hopefully would help newly diagnosed, as well as being good resource for others who continue their fight. When I was researching information for my husband, I would often come across an issue that while I think I found "identical" case, going back I find that the person might had a resection or liver transplant, therefore it won't apply to my husband' case. And kept thinking, that it would be nice if we had a topic with summary of experience and after finding similar case, research it further or contact that specific person (patient/caregiver). Of course I understand that no case is identical and everybody reacts differently to the treatment, but I still think it would be helpful for many.
Below you will see the list of questions and please answer only to the questions that you are comfortable answering and skip others, if needed. If you'd like to add any other question, that might benefit others - please do so. Or if you had more than 3 chemos and multiple instances of radiation - please add that information as well. I also think that summary of information about our loved ones who already passed, would be helpful as well. I appreciate everybody's input! Sincerely, Alla

Please copy and paste the questions below into your reply -

Age when diagnosed:
Diagnosis and Stage:
Initial CA19.9:
Lymph nodes involved?
History of cancer?
Had surgery (with details if applicable)?
Liver transplant?
Second opinion:
In remission (currently or was)?
Survived since diagnosis (years/months/weeks):
Chemo 1:
Length (and/or number of treatments) of chemo 1:
CA19.9 trend during Chemo 1:
Side effects Chemo 1:
Chemo 2:
Length (and/or number of treatments) of chemo 2:
CA19.9 trend during Chemo 2:
Side effects Chemo 2:
Chemo 3:
Length (and/or number of treatments) of chemo 3:
CA19.9 trend during Chemo 3:
Side effects Chemo 3:
Advice for chemo:
Cyber knife?
CA19.9 trend during radiation:
Experimental treatments/Clinical Trials?
Any other conventional treatments?
Blood transfusion?
Alternative treatment?
Use of supplements?
Special diet?
Complications during treatments?
What worked for nausea (best)?
Biggest regret:
Best advice given to me:
Best tip/idea/recommendation:
What would you have done differently?
Current status: