Asking for a little prayer...

[nscrbug]

I just learned this evening, that my older sister has been diagnosed with pancreatic cancer. She is 51yo...we are 7 years apart. I'm not sure how to even process this devastating news. She just had her biopsy on Tuesday, and today she was informed that there were cancer cells found in the biopsy. The next step is for her to see an oncologist to discuss how advanced it is and treatment options. I know this is an aggressive and very deadly form of cancer that progresses quickly, but that's all I really know about it. Can anyone here shed some light on this? Thanks.

Linda

[zoom-zoom]

I'm so sorry. My mom learned that her biological mom died from pancreatic cancer when she was 55, but it sounds like my grandma never took very good care of herself, at least not in terms of getting medical stuff checked in a timely manner. I think if it's caught early that the prognosis can be very good.

(((hugs))) to you and your sis. I hope this was caught very early and is treatable.

[OakLeaf]

Oh man. (((((((nscrbug & sister))))))) Prayers going up.

[PamNY]

Sending good wishes to your sister, you and your whole family.

I don't have specifics but I did hear from someone whose family member had this that treatment have advanced greatly in recent years.

[roadie gal]

My thoughts and prayers for your sister.

Pancreatic cancer is a particularly bad one. A lot of that is because it's usually caught at a later stage than a lot of others. There's no screening test for it and it tends to become symptomatic late in the course.

Her prognosis will depend on what stage she's at. Here's a good link that discusses staging and prognosis: http://www.cancer.org/Cancer/PancreaticCancer/DetailedGuide/pancreatic-cancer-staging

The web site also talks about treatments available.

That site may be hard for you to go through. Take it slow. I know this because my aunt, who has basically been my mother for the last 30 years, was diagnosed with pancreatic cancer this past December. Even though I'm a doctor, it was very hard for me to read the numbers. Luckily my aunt was a stage II, so she has a chance. We're hoping...

My heart goes out to you, and so do my hopes.

[Roadtrip]

Done and done. Sending best wishes and healing thoughts.

Shannon

[azfiddle]

I'm so sorry to hear this, for your sister, and for you. I don't know specifics, but I have also heard of more people getting through this.

Sending a virtual hug and positive thoughts.

[Savra]

What devastating news. Sending prayers and well wishes.

[jessmarimba]

Sending healing thoughts.

And we're all here for you, too.

[Bike Writer]

Prayers for you and your sister. I don't have any experience with persons with this kind of cancer. Thinking of you.

[blackhillsbiker]

Prayers ascend. Sending hugs as well.

Deb

[jelee1311]

Sending hugs and prayers

[KathiCville]

So sorry to hear the news. Sending healing thoughts and positive energy to you and your family!

[nscrbug]

Thank you all for the prayers, good thoughts, and information. This was definitely news that none of us had ever expected to hear. No one in our family (until now), has ever been afflicted with any type of cancer...so this is all very new to us. I am hoping to go with her when she meets the oncologist, to see if I can get more information...as I don't think she is "hearing" it all due to the shock of the news.

Thank you all again! It's comforting to have a forum with such wonderful ladies to fall back on, in times of need. :)

Linda

[ClockworkOrange]

Many, many hugs to you and your sister.

I only wish I could offer some useful advice.

Am sending lots of good vibes 'upstairs'.

Please remember to take care of 'you' in these difficult times too.

[indysteel]

((((Linda)))). Thoughts, prayers and good vibes to you and your sister. Please keep us posted.

[pll]

nscrbug,

Positive thoughts to you and your family. My mother died of pancreatic cancer -- as people already mentioned, it is hard to diagnose because people have no symptoms or have very generic symptoms. There are two types of it: 95% of the cancers of the pancreas develop in the cells that produce enzymes for digestion and are fast growing. The other 5% are islet cell tumors, that develop in the cells that produce/regulate insuline. Those are slow growing (supposedly what Steve Jobs has).

I trust you have encountered pancan.org (http://www.pancan.org) already. A couple of years ago, I had a good conversation about this cancer (and its "family" of related cancers related to mutations of genes: Lynch syndrome, Muir-Torre...) with a geneticist at Northshore University Health System, Wendy Rubinstein (http://www.northshore.org/research/rubinstein-wendy-s-md-phd-facmg-facp/). She is the principal investigator in a registry of families with a history of pancreatic cancer -- I decided to be part of it. PM me if you are interested in more links or simply to chat.

PS: The Lancet (http://www.thelancet.com/journals/lancet/onlinefirst) has a May 2011 pre print of a review article on pancreatic cancer.

[Crankin]

Good thoughts heading your way.
I also have no experience with this, so please accept my wishes.
It's great you are going with your sister for the oncologist visit.

[redrhodie]

(((Linda))) I'm so sorry.

[sundial]

Linda, my thoughts and prayers are with you and your family as you come to terms with the diagnosis.

I know of one individual who was cured of his pancreatic cancer. :) He often shares his testimony with other cancer patients and he stresses to never give up hope.

[Norse]

Sending positive thoughts and vibes for you, your sister and family.

[Bike Chick]

Linda,

I am so sorry. I will keep you and your family in my thoughts and prayers. Good wishes are being sent to you from downstate.

[spokewench]

So sorry for your sister's diagnosis. I'm sending all the good thoughts I can your way.

[Geonz]

Hugs And Prayers. I'm takin' a longer ride home and will send healing thoughts...

[nancielle]

Sending out healing thoughts for your sister and your family.

[runningteach]

I am so sorry. Sending healing vibes to your sister.

[nscrbug]

Well, my sister has an appointment with an oncologist on Monday and I will be meeting her there to sit in on the visit and get as much information as possible. We will find out how what stage the cancer is, and what her treatment options will be. Obviously, I'm hoping for a glimmer of good news...so I am keeping my fingers crossed. Thank you all for having me and my sis in your thoughts...it really means a lot to me.

Linda

[shootingstar]

A woman who worked less than 15 ft. away from me, her sister died of pancreatic cancer just after Christmas.

Ask out right how long she has to live. She'll appreciate a family member with her during this time.

I'm so sorry. I know how it feels.
I lost sister last year. For a completely different reason.

[Catrin]

I just saw this...sending up prayers for your sister, you, and your entire family.

[emily_in_nc]

So sorry...it's a scary diagnosis, but there is always hope.

My DH's cousin is going through it right now, and it doesn't look good for him.

Healing thoughts to you and your sister, and please keep us all posted.

Cancer S U C K S! :( :mad: :( :mad:

[pll]

Cancer S U C K S! :( :mad: :( :mad:

+1 with Emily.

Pancreatic cancer is an aggressive beast. Use this weekend to learn everything possible about it -- if you cannot access a published paper, some of us might be able to. I'd work the phones this weekend trying to get the names of the best surgical oncologist for a Whipple procedure, the best place for chemo... Is she in the Chicago area? Some of us could ask, too. I would not mess around with it. I'm very aware the news is shocking, but you need to put that aside and get ready for a battle.

[DebSP]

Hugs and prayers to you and your family.

[Brandi]

Try to think good healing thoughts as much possible even when it doesn't seem like you can anymore. Enjoy your sister and the time spent with her and don't dwell on what is happening unless she wants to talk about it. None of us know what is going to take us out which is why everyday should be spent like it is our last. And don't avoid her and make sure other people don't. I have had experience with friends and family saying "Oh they are going through so much I don't want to bug them" then the one who is sick is wondering where everyone is (seriously)
. This is the time when they should be all around her giving her love and support.
I will say a healing prayer and include her in my thoughts today. I am on a job on an island so I will take a moment and look out over the ocean and send healing thoughts her way!(((((hugs))))) Take deep breaths!

[nscrbug]

+1 with Emily.

Pancreatic cancer is an aggressive beast. Use this weekend to learn everything possible about it -- if you cannot access a published paper, some of us might be able to. I'd work the phones this weekend trying to get the names of the best surgical oncologist for a Whipple procedure, the best place for chemo... Is she in the Chicago area? Some of us could ask, too. I would not mess around with it. I'm very aware the news is shocking, but you need to put that aside and get ready for a battle.

Yes, we are just on the outskirts of Chicago...about 12 miles west of the city. A friend of mine has an uncle that is a doctor at Northwestern Memorial Hospital, and she asked her uncle for the name of the best cancer doctor on their staff. He came back with Dr. Steven Rosen - he is head of the cancer center. So far, that is the only name I've gotten...and I am encouraging my sister to see him as a 2nd opinion. The oncologist that my sister has an appointment with on Monday, is out of Elmhurst Memorial (which is where her GI doc is from)...her name is Dr. Amaryllis Gil. If there is anyone from the Chicagoland area that has any other doctor suggestions, please let me know. Thanks!

Linda

[indysteel]

Linda, this is all so sad to read. I hope you're hanging in there. Start rallying all the troops if you can. I've had some good friends go through similar things and everyone stepped up to make meals, do yardwork and cleaning and the like so that they didn't have to worry about anything other than their health. Facebook is a great tool for this. It's sometimes hard to ask for help, but those that love your sister and you will be chomping at the bit for something constructive to do to help.

I'll keep you guys in my prayers. I'm truly sorry you're having to go through this.

[ASammy1]

((((Linda and sister)))) Thinking of you guys. Keep us posted on what comes from the appointment on Monday.

Cancer truly does suck :mad:

[pll]

Some information sent via a PM.

[redrhodie]

I'm thinking about you and your sister right now. I hope today's appointment goes well! Sending positive vibes!

[GLC1968]

Wow, Linda - that sucks. I'm sorry to hear this. I hope today's appointment holds some good news for you both.

I'll be thinking of you!

[Desert Tortoise]

Linda, I'm so sorry. I don't have any information to share but I do have my prayers and I'm a big believer in those. :)

It will be a long road with lots of ups and downs. With a good medical team and the love and support of friends and family (fellow TErs), the burden will lighten.

You are in my prayers,
dt

[nscrbug]

So today's appointment with the medical oncologist was...in my sister's own words..."a real slap in the face". Yeah...it's bad. The tumor is in the body of the pancreas and is wrapped around several important blood vessels that feed other nearby organs...therefore, it cannot be removed. Because of this, it is classified as Stage III cancer. Ironically, it has not spread to other areas...that we know of. But because of the blood vessels involved, it's a serious situation. Obviously, we will be seeking a 2nd opinion with a surgical oncologist to determine if it really is inoperable. As for prognosis, the doctor didn't seem like she wanted to pinpoint a timeframe, but kept throwing out "10.5 months" as an "average"...and that was WITH a chemo/radiation program.

I still have hope that seeing a surgical oncologist might see things differently and be able to offer another option for her. She is due to get a detailed CT scan of the pancreas on Wednesday, to get a clearer image of the blood vessels...hopefully this scan will bring a glimmer of hope.

Thank you all again for your thoughts & prayers!

Linda

[indysteel]

Wow, Linda. That's a lot for you and your sister to take in. I hope the CT scan proves helpful and more hopeful than today's consult. I'm sure I speak for everyone here in saying that we're rooting for her. Thoughts and prayers and (((()))).

[zoom-zoom]

Wow, Linda. That's a lot for you and your sister to take in. I hope the CT scan proves helpful and more hopeful than today's consult. I'm sure I speak for everyone here in saying that we're rooting for her. Thoughts and prayers and (((()))).

For certain. (((Linda))) I hope the 2nd opinion gives a more positive prognosis for your sister.

[wannaduacentury]

I just learned this evening, that my older sister has been diagnosed with pancreatic cancer. She is 51yo...we are 7 years apart. I'm not sure how to even process this devastating news. She just had her biopsy on Tuesday, and today she was informed that there were cancer cells found in the biopsy. The next step is for her to see an oncologist to discuss how advanced it is and treatment options. I know this is an aggressive and very deadly form of cancer that progresses quickly, but that's all I really know about it. Can anyone here shed some light on this? Thanks.

Linda

Big hugs to both of you. I'm truly sorry to hear this. My dad had this type of cancer. I'll keep in my prayers. Jennifer

[nscrbug]

So my sister cancelled her CT scan that was scheduled for today because she did manage to snag an appointment with a 2nd opinion doctor at Northwestern Memorial - a comprehensive cancer center here in IL. Her appointment isn't until Friday, June 17th...but they scheduled her for their own comprehensive CT scan this Friday, June 10th. Then on Monday, the 13th, she meets with another medical oncologist...before finally meeting with the surgical oncologist on the 17th. It seems like a long waiting process, but I suppose that is to be expected when you are dealing with one of the best cancer centers in the entire state. She has actually been going to work these past few days because she is bored sitting around the house. She says the Vicodin is keeping the pain at bay, for the most part.

Anyways, that is the latest scoop.

Linda

[Possegal]

A comprehensive cancer center is a great place for your sister to be seen. I'm glad she's going to an appointment there. Ask the surgeon if there is potential that if chemo/radiation shrinks the tumor enough, could it then make surgery an option? I have no idea, but that has happened with people I know with other cancers. My sister wasn't a surgery candidate for another reason but then after the chemo/radiation, she was. It wasn't successful, but they were able to try. But she's still doing very well. She doesn't have pancreatic mind you, but sometimes it helps to hear of other people doing well beyond what the median survival time is.

And that is the only number a doctor can really give you, median survival. At this time, half of the people with this stage of this disease are still alive, half are not. Then there are many reasons why what happens to the population isn't indicative of what will happen to any one person. No one person is a statistic. No doctor knows how long anyone has to live. They know what the population statistics tell them. I'm always dismayed when I hear of doctors telling anyone "you have X months to live". This is all horrid enough, without being told a defined timeframe. My sister was told that 23 months was the median for her disease, that was hard enough. I'm glad she wasn't told that she had 23 months to live. Next week will be 49 months.

I'm so sorry you and your family are going through this. I understand all too well how it feels to sit there feeling so helpless while your sister is in a battle like this. It sounds like you are doing everything you can for her, but the powerless feeling totally s*&#s. I have a good bit of experience in this area - both professionally and 49 months as a sister to a cancer patient. If I can do anything, don't hesitate to PM me.

You and your sister are in my prayers!

[spindizzy]

Your sister has a wonderful sister. Strength and healing are sent your way.

[pll]

Thinking of you and your sister this morning. Best wishes for today's appointment.

[indysteel]

thinking of you and your sister this morning. Best wishes for today's appointment.

+1.

[nscrbug]

Today we went to see the oncologist at Northwestern to consult about my sister's latest CT scan, which she had this past Friday. The news wasn't good, unfortunately. Apparently, the new scan is showing a lesion on the liver. She is scheduled for a biopsy of the liver lesion, but the doctors are almost certain that the cancer has now spread...making it Stage IV. Surgery is no longer an option now. Her only options are aggressive chemo/radiation therapy, or getting into an open clinical trial at the University of Chicago. We were so hopeful going into this today...thinking that there was a chance of shrinking the tumor with chemo/radiation in hopes of getting her to the point of surgery to remove it. And now everything has changed from "survival" to just prolonging the inevitable, which is something my sister is not sure she wants to go through. She doesn't want to suffer and be in pain for her last few months here...and I can't say as I blame her...I wouldn't want that either. This is just so overwhelming. I know she is looking to me for guidance on what to do, and I honestly don't know what to tell her.

Linda

[Catrin]

Oh my, I am so very sorry. Sending warm thoughts and prayers for you, your sister, and your family. Your sister has a wonderful sister helping to support her!

[blackhillsbiker]

You are both in my prayers.

Deb

[indysteel]

Linda, I am so, so sorry to hear the latest news on your sister. You are both in my thoughts and prayers.

[OakLeaf]

(((((((Linda & sister)))))))

Sending prayers for peace and strength to both of you.

[Bike Chick]

Linda, I am so sorry about the latest news. I don't know that anyone knows what to do it times like these except pray and be strong for your sister. Keeping you all in my thoughts and prayers and asking God to give you strength.

[Crankin]

I am sure you will be a source of strength for your sister. My only thoughts are don't let others push your sister into pursuing a course of treatment that she doesn't want.

[Owlie]

Thinking of you both, and sending you strength and peace.

[pll]

I don't know what to say, except to agree with Crankin. Virtual hugs to you and your sister. You will be in my thoughts.

[jessmarimba]

You're both in my thoughts as well.

[redrhodie]

Oh, no. I was hoping for better news. I'm so sorry. I hope I can help in any way. I'm here for you.

[Brandi]

What can you say? Just let her know you love her! And again make this time you have the best you can possibly make it. Like I said some of us don't get a chance to know what it is that will be our end. Maybe that is better but some people don't live their life then it is gone. Try to just be there for her. And if she doesn't want chemo and radiation support her. I would not want my last months on earth being sick like that unless I knew it would help. My thoughts and healing prayer's are with you both.
I have a friend who lost her sister to a rare cancer some years back her sister was only 34. I spent time right after with my friend for a few weeks. She loved and supported her sister like you are and in the end she was glad they just lived with the time they had left. But she did not like seeing all the treatment her sister went through it was not good.

[drgynfyr]

lots of prayes and wishes for you Brandi ((hugs))

[ASammy1]

Oh ((((Linda))))... I'm so sorry for this latest news.

+1000 on what Crankin said... I know that this must be very hard on your sister, but we are here for you too.

[Atlas]

My thoughts are with your family. (hugs)

[Norse]

I am so sorry Linda. ((((((((((((((((Hugs)))))))))))))))). When my Dad went through lung cancer, he initially chose chemo, even though they said it may only extend his life 6 months at the most. At that point, he felt like he needed to at least try something and was not willing to "quit" yet. This is how he viewed it and it is a very personal decision and one that only your sister can make knowing she has the full love and support of her wonderful sister and family in whatever her choices. For my Dad, the chemo did not help. It only made his last few months that much more painful and I wish he would not have suffered like that, but, it made him feel that he went down fighting and that's what he needed.

You and your sister are in my thoughts.

[PamNY]

I'm so sorry to hear this latest news. I know you are a great support for your sister, and will give her strength and love.

[GLC1968]

Linda - I'm so sorry to hear the latest. My thoughts are with both you and your sister in this difficult time. I agree with Norsegoddess - the decision has to be hers. Some would choose to fight no matter what the cost and what the outcome, others would rather not. The choices is so incredibly personal and it's up to you to 1) support her no matter what her decision and 2) take care of yourself too.

[sundial]

Just being with her will bring her comfort. :) You both are in unchartered waters and there's no how-to guide for dealing with cancer. Comfort becomes a priority and she will need you as she comes to terms with her cancer. There will be an ebb and flow to her acceptance of the disease and with time together you both can help determine the course of action for her treatment.

[Reesha]

I have no comprehension of how difficult this must be for your sister and yourself, so I have no advice. Instead I'm sending some positive vibes and thoughts your way! :o

[tulip]

Listen to her and let her talk. I was just visiting with a friend today who is in the late stages of cancer. She's very frustrated that she can't finish all the things she set out to do. She also talked about some regrets. And reflected on what a good life she has had and all the wonderful things she has done and all the incredible people she has met. I just let her talk and we both just held each other and cried. I told her she is so loved. That's all I could think of to say.

My heart aches for you and your sister.

[Brandi]

lots of prayes and wishes for you Brandi ((hugs))I pass this on to Linda :)

[emily_in_nc]

Linda, what terrible news. :( I don't have much to add to what the wise, caring women here have already said except to relate my grandmother's story. She was diagnosed with breast cancer in her early 90s and chose the no treatment approach (based on her age, not the stage of the cancer). We all supported her, as did her doctor. She made every effort to enjoy the time she had left, although she was pretty much bedridden at the end. And I'm sure treatment would not have changed that. She lived until 94 with as much dignity as anyone could! Dignity and quality of life always trumps quantity, I think.

Hugs and warm thoughts to you and your sister.

[zoom-zoom]

Linda, I am so incredibly sorry. I send strength to you and your sister. :(

[shootingstar]

I'm sorry to hear the latest news. Be there with her.

[nscrbug]

Boy oh boy...this week has been nothing but one letdown after another. :( My sister had decided that she wanted to seek out a 3rd opinion at the Cancer Treatment Centers of America (the place that runs commercials on tv). They have a Midwestern Regional facility a little over an hour away from us, so we all thought "she has nothing to lose" by going there and hearing what they have to offer. She called to set up the appointment and the representative she spoke with was very helpful and started initiating the process. She was actually excited and hopeful for the first time since being diagnosed. Well...she got a call back from them saying that there is some kind of out-of-network "loophole" with her Blue Cross/Blue Shield PPO plan...and her insurance will NOT cover the treatment at CTCA. Needless to say, she is devastated that her insurance won't cover being treated at this facility. So now we are back to square one again. She is going to talk with her HR department at work tomorrow (she works for the federal government in Medicare) and see if there is something that can be done. Please keep your fingers crossed for us!

Linda

[goldfinch]

I am wondering about the the "loophole." Typically, if the provider is not in your PPO plan network you pay a higher percentage of the cost of care and may also be required to pay the difference between what the health care provider charges (which is not regulated) and what the plan deems to be "reasonable and customary" for the service. So it can get extremely expensive and often unaffordable. But it is less common for a plan to out and out not cover a provider.

I don't suppose Mayo is in her network?

[nscrbug]

I am wondering about the the "loophole." Typically, if the provider is not in your PPO plan network you pay a higher percentage of the cost of care and may also be required to pay the difference between what the health care provider charges (which is not regulated) and what the plan deems to be "reasonable and customary" for the service. So it can get extremely expensive and often unaffordable. But it is less common for a plan to out and out not cover a provider.

I don't suppose Mayo is in her network?

As in Mayo Clinic in MN? I really wouldn't know, she would probably have to call BC/BS and find out. It's weird though, because I just went to their (Cancer Treatment Centers of America) website to see what insurances they accept, and while they do list Blue Cross/Blue Shield...they don't specifically list Blue Cross/Blue Shield PPO. I'm kind of shocked, actually...I would have figured BC/BS to be accepted pretty much everywhere.

[goldfinch]

As in Mayo Clinic in MN? I really wouldn't know, she would probably have to call BC/BS and find out. It's weird though, because I just went to their (Cancer Treatment Centers of America) website to see what insurances they accept, and while they do list Blue Cross/Blue Shield...they don't specifically list Blue Cross/Blue Shield PPO. I'm kind of shocked, actually...I would have figured BC/BS to be accepted pretty much everywhere.

A PPO (preferred provider option) is kind of a cross between traditional insurance and an HMO. The insurer has a network of physicians and other providers that are "preferred" or "in network". If the doctor or other provider isn't in your network and it isn't an emergency you end up paying a lot more. BC/BS in various states are different entities plus BC/BS often has many different types of plans available, including PPO plans, HMOs and traditional insurance.

Her employer should have a book with a list of in network providers that she can check.

[shootingstar]

Important to find out what truly would the treatment do....simply prolong her life....would it reduce the cancer?????

I understand that pancreatic cancer is a difficult cancer that can be painful..

YOu really,really need to grill the doctor specialists. Get them to tell her/you the real prognosis for her.

This is how my sister-doctor dealt on behalf for my father who has prostate cancer.

We know given his age 82, he will not get better from chemotherapy, it will only delay the cancer. It will weaken his immune system for certain and there won't be no turning back, even with chemo. Chemo will happen --the decision is his. So he has not elected this yet ...and simply functions along....looking um......normal to us.

So far we have noticed that he simply has colds more often and takes longer to recover from sniffles.

He has up to now, no respiratory problems, no cardiovascular problems. I cannot even begin to say...how inspiring this is to my family..how important to have good health starting from youth onward...because if he did have additional health problems, most likely he wouldn't be as "good" outwardly as he is now.

We know our father is livinig an illusion but we know if we get him to know acknowledge that cancer will take him down, then he will fall into a depression and that will pull down his health faster.

So we skim along....playing the little mini illusion for him..to keep his mental equilibrium.

[goldfinch]

Do you know why CTCA aren't covered?

In the past, it's been suggested to me that I actually ask specific doctors if they are willing to be a part of a PPO. It was suggested by my insurance company. Maybe you could call an insurance rep at CTCA? Just to try? Maybe a specific doctor would help?

Is being a part of a trial still a possibility?

Yes, they could ask to be part of the network but that would mean that they would have to accept the insurer's fee structure. They may or may not want to.

(Just answering some of the insurance questions here and staying away from the issue of whether chasing CTCA or clinical trials is advisable).

[Realgone]

I just learned this evening, that my older sister has been diagnosed with pancreatic cancer. She is 51yo...we are 7 years apart. I'm not sure how to even process this devastating news. She just had her biopsy on Tuesday, and today she was informed that there were cancer cells found in the biopsy. The next step is for her to see an oncologist to discuss how advanced it is and treatment options. I know this is an aggressive and very deadly form of cancer that progresses quickly, but that's all I really know about it. Can anyone here shed some light on this? Thanks.

Linda

I would recommend getting advice from a Naturopath in conjunction with the Oncologist. I tried for years to get someone I loved who was diagnosed with colon cancer to do this, but they never did. I think his outcome would have been better and I would not missing him every day and thinking about him all the time. I believe it was the chemo that killed him.

[goldfinch]

Naturopaths can't cure cancer. They can't and they don't and they never have. False hope is cruel.

http://www.sciencebasedmedicine.org/index.php/cancer-treatment-centers-of-america-and-naturopathic-oncology/

[smilingcat]

No one wants to hear the worst news, the nightmare and the fear we all want to avoid.

The news truly saddens me. There is no other way to put it or to lessen to devastating news. The most important thing from here is to try to get involved in something enjoyable and to help stop dwelling on the inevitable. Some may want to call it denial; but, I see it more as a means to a quality of life to celebrate who we are.

Sincerely,

Shawn

[nscrbug]

Well...I just spoke with my sister. She and the rep from her HR department have been on the phone most of the morning with BC/BS to see if there was some way around this "loophole". Unfortunately, she was told "no". She will not be able to switch her insurance plan from "basic" to the "standard" plan, which DOES cover a portion of out-of-network costs....as opposed to her basic plan which does not. She feels like we are "spinning our wheels" here, and doesn't want to waste anymore precious time. So...CTCA is no longer an option, and we are on to "plan B"...which is back to Northwestern for the standard line of treatment. She is calling them today to set it all up and we will go from there and hope for the best.

Linda

[indysteel]

Well...I just spoke with my sister. She and the rep from her HR department have been on the phone most of the morning with BC/BS to see if there was some way around this "loophole". Unfortunately, she was told "no". She will not be able to switch her insurance plan from "basic" to the "standard" plan, which DOES cover a portion of out-of-network costs....as opposed to her basic plan which does not. She feels like we are "spinning our wheels" here, and doesn't want to waste anymore precious time. So...CTCA is no longer an option, and we are on to "plan B"...which is back to Northwestern for the standard line of treatment. She is calling them today to set it all up and we will go from there and hope for the best.

Linda

We're all hoping for the best, too, Linda. We're here for you no matter what.

[mudmucker]

I haven't been on the forum much and am late to this thread. I wish you and your sister strength and peace through all of this.

[nscrbug]

I just realized that it's been a while since I posted an update to this thread, so here goes. The last time I posted, my sister's insurance had been rejected by Cancer Treatment Centers of America and we were moving on to Plan B - back to Northwestern for standard line of treatment, which consisted of a fairly new but extremely aggressive 3 chemo "cocktail" called Folfirinox. It required a chest port to be implanted so that the "fanny pack" pump she would have to wear for 46 hours could easily be attached for the treatments. Well...right before she was to have the chest port implanted (last Thursday), she decided that she didn't want to go through with the Folfirinox treatment. This regimen is considered very tough and only offered to the healthiest of patients due to the very harsh side effects. She basically had decided that she didn't want to spend her last few months here in misery and agony from the effects of the chemo...so she declined. But before we left the hospital, our NP called us back in to talk about another option. That option would be the old, conventional chemo treatment - gemcitabine. It's not as effective as the Folfirinox regimen, but it is much better tolerated by most patients. This is the treatment that Patrick Swayze underwent initially after he was diagnosed back in 2008. After taking the weekend to think it over, my sister has decided to give the gemcitabine treatment a try. She is tentatively scheduled for her first treatment on July 7th, but they are trying to get that date moved up sooner. She has been feeling nauseous and not eating much lately and is working with a nutritionist at the hospital. Naturally, they want her to maintain her weight as much as possible, so they are encouraging her to eat small, frequent high-protein, high-fat snacks/meals. Hopefully, she will have a positive response to the gemcitabine chemo and be willing to stay on it long enough to see if it helps.

That's all I have for now. Thanks for all the thoughts and prayers...it is very much appreciated.

Linda

[PamNY]

Thanks for the update. Your sister sounds like an admirable woman. Still wishing the best for all of you.

Pam

[shootingstar]

Be with her.

Stay healthy yourself, meaning don't get a cold and expose it to her. Her immune system will break down with that chemo treatment.

I feel for you.

[OakLeaf]

Keeping you both in my prayers.

[indysteel]

Thank you for taking the time to update us, Linda. You and your sister have been on my mind and in my prayers a lot. I'm sorry that she's facing such hard decisions, but I'm glad she's being honest with herself, her family and her doctors about what's most important to her.

[solobiker]

I am very sorry to hear about this. My thoughts are with you and your family.

[azfiddle]

I too just want to send my thoughts to you and your sister. What a difficult set of choices she has had to make. I hope that this treatment option will work for her. Lean on all of us here whenever you need to- we're here for you.

[hebe]

Thoughts and prayers for you both from me too.

[Bike Chick]

Thank you for keeping us updated. You are all in my thoughts and prayers.

[Brandi]

Thank you for the update. Healing thoughts and butterfly kisses coming your way! Keep up your faith that things will work! Don't ever give up. But I respect your sister wanting to live with the time she has left not feeling awful.

[wackyjacky1]

Keeping you both in my prayers.
Same here.

[nscrbug]

So it's been well over 2 months since I posted an update on how my sister is doing with her stage IV pancreatic cancer...so I thought I'd bring you all up to speed on what's been happening.

So she has completed 3 chemo cycles (3 months) and was due for a new CT scan last Wednesday to see how the tumor has been responding to the treatment. She went in for the scan in the morning and later that afternoon got a call from the hospital saying that she needed to go directly to their ER because the scan detected 2 pulmonary emboli on both sides of her lungs. :eek: I took her back to the hospital that afternoon. Before starting her on anticoagulants, they had to do a brain scan and MRI to determine if the cancer had spread to her brain (it hadn't). So they gave her an IV drip of Heparin and kept her overnight to monitor her. The next morning, they ran tests and noticed that her platelets had dropped quite low. They thought that perhaps she was having a negative reaction to the Heparin (many people are allergic to it) so they needed to figure out what was going on before sending her home with injections that she will have to give herself for the next 6 months. They tried a different blood thinning agent to see if that invoked the same reaction...it did. So they went back to Heparin (actually Lovenox, which is in the Heparin family) and after spending 3 nights in the hospital, her platelets finally leveled off and remained stable. I brought her home this afternoon...she was so happy to be home. So the good news is...the blood clot issue should be controlled with the self-injections of Lovenox. Apparently, it's a fairly common issue among cancer patients. However, the bad news is...the chemo is not working and the cancer has progressed. We don't know exactly how "progressed" it is...we find that out in greater detail on Thursday when we meet with the oncologist again. It looks like they want to try a different (more effective/aggressive) chemo regimen if she is willing. That is all we know for now. Thanks for the continued prayers and good thoughts!

Linda

[zoom-zoom]

Oh, Linda, I am really sorry to hear that. I hope this next round of chemo kicks that Cancer out for good!

[redrhodie]

Thank you for updating. I've been wondering how you're doing. It sounds so hard. I hope you both find the strength to get through this. Cancer sucks.

[indysteel]

Thank you for the update, Linda. I'm very sad to hear that the cancer is progressing. I'll continue to keep your sister and you in my prayers. I hope the more aggressive treatment works and that she can tolerate it--if that's the route she chooses. Hugs to both of you.

[smittykitty]

Linda, Thanks for the update. I found myself wondering about your sister just this week.

Sending you two many good thoughts as you learn about the next step in her care. Sounds like she is a very lucky lady to have you at her side.

[OakLeaf]

Oh man - thanks for the update, but so sorry the news isn't good. Thoughts and prayers to both of you.

[jyyanks]

My thoughts and prayers go out to you and your sister. Sending positive thoughts your way.

[Crankin]

I am sorry about this news, but you are an angel.
I couldn't do it...

[hebe]

I am so sorry to read this, what bad news for you both. Thinking of you and your sister.

[Desert Tortoise]

What a tough fight. I'm so sorry. You are both in my prayers.

dt

[tzvia]

I lost two Aunts to cancer, it's a hard road to walk, but remember you are not ever alone. Healing thoughts and prayers are with you both.

[pll]

Linda,

What is there to say? I hope you are spending time with your sister and having some good conversations. Thinking of you, sending good vibes your way.

-pll

[Sardine]

Like others I hope that the treatment works and I admire your strength. I know how difficult it is to do what you're doing.

[Owlie]

Thinking of both of you.

[owlice]

(((((((((Linda)))))))))
(((((((((Linda's sis)))))))))

[jessmarimba]

I can't imagine being in either of your positions. My sister is my favorite person in the world. I'm sending healing vibes your way.

[Dogmama]

Sounds like you & your sister have some big decisions ahead. Sending energy for comfort & wisdom your way.

[RubyTuesday]

I just read your post for the first time today and I am sending my prayers and hugs to both you and your sister.

My sister was diagnosed three years ago with breast cancer and we thought we had it licked. Last year it metastasized to her liver and was re-classified as stage four, metastatic breast cancer and her cancer changed from HER2 positive to triple negative, the most deadly type of breast cancer. She contacted MD Anderson in TX and she flew out there for no reason. They were not helpful at all and was told she was not a candidate for surgery because one of the tumors was wrapped around a major artery. She came home deflated. She discovered a program that was offering an experimental drug and she got in the lottery for the drug. That drug dissolved the tumor completely and a surgeon at UCLA did surgery to remove any remaining cells, there were none. If we have won this battle, my sister will be one of the first to survive this deadly type of cancer.

Don't give up Linda there is always something else out there and you just have to keep looking and asking. I know it is exhausting and emotionally draining. You and your sister are in my prayers. I pray that some other treatment will present itself and you and your sister and she has the energy to continue to fight. Hugs to both of you.

[ShubieGA]

Healing prayers being sent.

[ClockworkOrange]

Hugs to you Linda and your sister.

Both of you are in my thoughts.

I suppose keep talking, laughing, crying and sharing things together.

[azfiddle]

Sending my most positive thoughts and virtual hugs. I hope for the best possible outcome for her. No matter what the future holds, cherish every moment of your time together.

[nscrbug]

I know it's been a long time since there has been any activity on this thread, but I thought I should give an update on my sister. It is with a heavy heart that I say my dear sister, Cookie, lost her battle with pancreatic cancer last night, June 16th, 2012. She was way too young to succumb to this horrible disease, and I will miss her dearly.

Linda

[goldfinch]

I am so sorry Linda.

[redrhodie]

Oh, Linda, I'm so sorry.

[indysteel]

((((Linda)))). I am so terribly sorry to read this. My heart goes out to you and your family. Please know that your TE sisters are here for you.

[Catrin]

(((Linda))) I am so sorry for your loss and my heart goes out for you and your family.

[Crankin]

I am sorry for your loss.
Use this wonderful group of people to help you get through this.

[Blueberry]

(((((Linda))))))

I'm so very sorry for your loss:( We're here if/when you need us.

[Dogmama]

I'm so sorry for your loss. Please stay close to your TE sisters & let us help.

[hebe]

I am so very sorry for your loss. Thinking of you and your family.

[OakLeaf]

(((((((Linda))))))) I'm so very sorry. Keeping your family in my thoughts.

[jobob]

So sorry for your loss, Linda.

[emily_in_nc]

So sorry to read this sad news, Linda. I can only imagine how difficult losing a sibling would be. My deepest sympathies to you and your family.

Emily

[shootingstar]

I wondered since we had not heard about your sis for awhile, nscr.

I'm very sorry for your loss. I know how it feels. I lost my sister (she was 1 yr. younger than I) to suicide.

Though it has been 2 yrs., losing a sibling when we're not old, is always sad. (And for me, the corner of sadness never goes away. A sibling bond is forever because it's growing up together from babyhood.)

I'm certain you tried to be there for her as much as you could.

[nscrbug]

Thank you all for the wonderful words and thoughts. It touches me more than I can say. She is in a better place now...a place with no pain, no agony, no misery. I know that someday, I will see her again.

Linda

[feral1]

sorry for your loss :(

[Trek420]

(((((( Linda & Linda family )))))))

[pll]

Dear Linda,

My condolences. I had been thinking about you in the last couple of weeks.

-pll

[smilingcat]

Dear Linda,

My sincere condolence to you, your family and your sister's family. I wish everyone healing thoughts and remember all that was wonderful about your sister. And all the joy she had brought.

Peace be with you,

Smilingcat

[jessmarimba]

I'm so sorry - thoughts are with you and your family.

[Possegal]

I'm so sorry Linda. Like others here I'd been wondering about you and your sister. My condolences to you and your family.

[chatnoire]

Linda, I'm new to the community, but I also offer my prayers to you and my deepest condolences. Losing a loved one is never easy, and I hope that your friends here and in real life can all offer support for you at this time. I'd love to hear more about your sister if talking about her would help.

[zoom-zoom]

Linda, I am so sorry. I will reserve a quiet moment of reflection for your sister during the coming days. I hope your family is able to find some peace while you grieve your loss.

[Norse]

I am so sorry for your loss Linda. May you find some comfort knowing that she is no longer in pain.

[Sky King]

Linda,

Like me, I imagine everyone on this blog will take a moment on the next bike ride and give a shout out to your sis. We will smile, feel the wind in our face and enjoy life in her memory. Thinking of you and your family.

Stacy
aka Sky King

[GLC1968]

Linda, I'm so sorry for your loss.

[spokewench]

I am so sorry to hear about your sister. I am so sad for you and for your sister. It is heartbreaking. Please take good care of yourself and know you are in my thoughts.

Spoke

[indysteel]

Linda, you've been on my mind since reading your update yesterday. I'm very sad for you. I hope you're doing okay--under the circumstances. Please know you're in my thoughts and prayers.

[smittykitty]

Linda, so sorry for your loss. I've wondered how she was doing. You are right, she is resting in peace without pain. Again, so sorry. Hugs.

[wackyjacky1]

I'm so very sorry to read of your sister's passing. My thoughts and prayers go out to you and your family.

[nscrbug]

Many, many thanks to all that have sent prayers and thoughts. It's been a tough couple of days (funeral was yesterday), but reading all the wonderful posts from everyone has truly helped with the grieving process. Thank you all, again!

Linda