Congrats, Lainy!  I've missed seeing your smiling face, and it's wonderful to come back to the boards to your wonderful news!

Love,
Caroline

2

(3 replies, posted in Members' Cafe)

Hi everyone,

It's been a while.  I wasn't sure that I would ever come back to this forum even though you have been so kind to me and hold a special place in my heart. 

It's been a little less than five months since my mom passed away.  My husband and I moved to a new city (we took jobs in western Mass to be closer to my parents in New Jersey, but as some of you know, my mom wanted to pass in California and that's where she's buried and where my dad now lives with my brother and his wife).  The new life has been a good distraction, but on certain days, I'm hit with a tidal wave of grief.  When that happens, what immediately pops into my head is the hymn, "We Believe, We Celebrate" (?) that my mom used to like.  I think the words, "We believe we will see you once again," are what brings me comfort, and I do believe that my mom has a big part in that. 

But I've been dreaming almost every single night about my mom, and she's always sick in my dream.  She's not bedridden or anything, but she's sick and sometimes dying.  In my waking hours, I imagine her as happy and free of her body and illness, but I don't know why that's not translating when I'm sleeping.  Is this something that some of you have experience with?  I've become good friends with a colleague whose mom passed away from breast cancer about a year before my mom did, and she says in her dreams (though not nightly in her case), her mom is always sick, too.  These dreams for both of us are quite upsetting, and I'm wondering what I can do to deal with them.  Will they begin to go away?  Any advice would be helpful.

My utmost love and gratitude to all of you,
Caroline

Lainy,

I can't reiterate how thankful I am to you for all your support this past week.  I couldn't have gone through the process without you.  The idea of my mom checking out Teddy's Italian restaurant when she's done visiting with her parents makes me smile & brings me comfort.  Thank you.

Much love,
Caroline

After fighting cc bravely for the past eight months, my mom passed away on Thursday afternoon.  A devout Catholic, she probably chose the day of the Ascension of the Lord during this Easter season as the day to go.  She was surrounded by her loving husband, son, daughter-in-law, son-in-law, and me, her daughter during her last days, and we sent her off with so much love and gratitude for everything she's given us.

Her funeral mass will be next Wednesday at her old church.  I can't believe she is gone.  I am sad, of course, but I also feel so honored and grateful to call myself her daughter.  She was amazing right up until the end.  To all the sons and daughters who lost their beloved mother or father to this disease, my deepest sympathy.  What people have been telling me is true; nothing prepares you for the loss of a mother. 

Caroline

5

(28 replies, posted in Introductions!)

Dear Kelly,

I wanted to write as soon as I read your post on your mom's passing, but I haven't been able to take the time.  I'm so sorry for your loss.  My mom was getting treated at MSKCC in Basking Ridge maybe right after your mom started getting treated in Manhattan.  I always felt closeness in reading her posts because they sounded like my mom could have been writing them.  She was such a kind and gracious person, and always had encouraging and candid responses for me when I asked her questions directly. 

I know taking your mom to the appointments in the city couldn't have been easy (I did it just a few times procedures & meetings with the surgeon, and the drive -- not to mention the parking -- always felt like such an obstacle course), but I was glad for your mom that you were there to do that for her.  My mom's in hospice now and may be joining your mom soon.  I'll tell her to look for Mary.

My warmest thoughts are with you and your family.

Caroline

Beth,

I am so sorry to hear about your mom's pain.  I've been thinking about you and wondering how you and your mom were doing after the clinical trial.  I'm praying for her comfort and your strength and peace.

Caroline

My mom now spends most of the day sleeping with no food and little fluid.  But the days since my last post were such a blessing.  A week after getting to LA, my mom felt good enough to suggest an outing to Santa Monica so that she could see the ocean and walk by the beach.  We walked for good 40 minutes before she started feeling tired.  Every day, she woke up amazed that she was still feeling good.  Her appetite was excellent, and she ate everything we gave her with great relish.  Each and every day was such a gift.

Then last Thursday, she started spending more time in bed (the night before, she surprised us by wanting to take an after dinner stroll outside, and the entire family had an impromptu outing around my brother's neighborhood).  My best friend lives in LA, and she was supposed to come over with dinner (she had been coming by almost every day with food since we came to LA).  I thought my mom would sleep through my friend's visit, but right before she came, my mom woke up and went out to the living room to wait for my friend.  When my friend came, my mom was funny, lively, and gracious.  My friend and I took pictures with her and even took her for a quick "walk" around the living room.  After about 30 minutes of that, my mom got tired and allowed my friend and me to take her to bed.  Since then, my mom's had less and less energy.  She took one bite of the extravagant lobster dish that my friend brought.  That was her last solid food.

I have been guided through this process by the angel of this site, Lainy.  I couldn't be doing any of what I'm doing without her support and guidance.  On Friday, she asked if my mom could be waiting for someone.  I said it could very well be my husband, who was still in Atlanta (and sort of in denial that my mom was not going to get better).  So my husband flew out on Saturday, getting here that night.  Before he came, when we told her he was coming, my mom would ask when he was coming whenever she woke up.  At one point, she said, "He was just here.  He was right there, wearing a blue t-shirt."  I asked my husband what he was wearing that day, and he said a white t-shirt earlier but that he had changed to a blue shirt (but not a t-shirt) for the flight.  This confirmed to me that my mom is in the process of passing to another world, not confined to the physical and explicable.  And when my husband finally came, my mom was beaming.  She told him she missed him and had been wanting to see him.  That was perhaps her most sustained lucid moment since Thursday. 

She does have fleeting moments of clarity though.  Yesterday, she wanted to sit up when my brother and I were changing her position to prevent bed sores.  She sat up and told me thank you after giving me the most beautiful smile.  She also told us on another occasion that she was ready to accept everything.  And I've been talking to her constantly, thanks to Lainy's advice.  I've been telling her that she'll always be in our hearts and with us in spirit.  I told her that she is our leader and that the leader always goes into the unknown first to explore.  I told her we would certainly see each other again and asked her to be with us always.  In response to all this, she's been nodding and sometimes smiling (she smiles every time I tell her she's going to see her mom & dad).

Because of all this, I am amazed by my mom each and every day.  But I think it's getting to be harder and harder for her, so I'm praying for her to finish this process soon.  I've seen the dying process compared to the birthing process, and I think the simile is perfectly apt.  We're all well wishers and witnesses to her passing to a new life.

There are other factors involved in this process that has made it easier and more difficult at times, particularly concerning our experience with different hospices (we're on our third hospice; we had one in NJ which was wonderful, then had to switch from the first one in LA because they were egregiously incompetent).  I will write another post on that some other time, as I think it'll be helpful for others in a similar situation.

Thank you everyone for your loving thoughts.  I'm so grateful for this site and its bringing Lainy into my life (I'm writing this update post because she suggested it).  Please continue to pray for my mom.

Caroline

Thanks so much everyone, for being rock solid in your support whenever I come for help on this board.  Lainy, I do have some specific and personal questions, so I'm going to email you privately.  Much love to you all.

Caroline

Since my last post, we started hospice care for my mom so that her pain could be managed enough for her to travel to California.  She told me that she knows her own body and that she knew she didn't have much time left.  It was her dire wish to return to California so that she could say good bye to her people and be at a place where she has a burial plot. The wonderful hospice team took two days to get her pain completely under control (they took her off of oxycontin & put her on morphine).  We started hospice on Tuesday, and by Sunday, we were on a flight to LA.  Though it was a major financial strain, we flew first class so that she could be as comfortable as possible.  I was so impressed and proud of her for being a super trooper through the 6-hour flight.  It was her best Mother's Day present to all of us.

So now, my parents and I are staying with my brother and his wife in LA.  I have never seen my mom this happy.  She is not in pain (we got connected with another hospice right away), and we have been using this time to talk a lot and prepare for her journey ahead.  Every day, I feel like my heart is breaking in tiny pieces because I will miss her so much, but I'm also immensely grateful for this opportunity.  I am cherishing every minute of this time with her.  Her appetite is still excellent (the hospice doctor took her off of Megace & put her on decadron -- the same steroid that my mom took while she was doing chemo), and though she is increasingly getting weaker, she is still able to shower and dress herself.  The only thing making her uncomfortable is her abdomen due to ascites, but she's taking spironolactone and furosemide (lasix), so hopefully that'll bring her comfort soon.  It was just weeks ago that I used to pray for a miracle for her cancer to be under control.  But these days, I am praying for her passing to be as peaceful and pain-free as possible.  In the past, when I read posts on this board that particularly caught my attention, I used to go back to the writer's first post to see when the diagnosis was.  When I read that someone passed 6-8 months after the initial diagnosis, I used to think, that's not going to be my mom.  She's so healthy otherwise!  And I guess she still is.  Even given how damaged her liver is, she's still hanging on and gracing us with her love day after day. 

To everyone who's already gone through what my family is going through now, thank you so much for continuing to provide your support and wisdom on this board by lending a kind ear and helpful answers.  And to all affected by this horrible illness, my love and prayer for strength and courage.

Caroline

Dear Crissie,

I am a daughter like you caring for a sick parent.  I can only imagine the bombardment of emotions you must be feeling right now.  Please don't let guilty be one of them.  You are doing everything you can.  What you're going through is really rough.  I am praying for peace for you.

Caroline

Hi everyone,

A lot has happened since my mom stopped the clinical trial on Cabozantinib at Mass General.  My mom has decided not to receive any more chemo.  She was recommended radiation for her swollen lymph node by her neck, which also got bigger during the clinical trial (as did her primary tumor).  She decided to hold off on that too because other than the sight of it scaring her, it hasn't been causing much pain.

Since March, it's been a constant juggling act of putting out small fires (sorry to mix my metaphors).  Constipation?  Check, and finally controlled by acupuncture and regular intake of miralax and prune juice.  Nausea?  Check, and controlled by acupuncture.  Loss of appetite?  Check, and controlled by acupuncture & megace.  Pain?  Check, and still struggling.  She tried the Fentanyl patch, which was a disaster.  She's now on 40mg of OxyContin 3x day and Oxycodone for breakthrough pains. 

The latest challenge is that she's jaundiced.  Her bilirubin is 7.4.  She's not itchy, and her urine/stool colors come and go from dark/clay colored to somewhat normal.  She's more jaundiced on some days than others.  We went to Urgent Care at MSKCC in NYC on Monday at the recommendation of her local oncologist at MSKCC in Basking Ridge.  But they refused to do any procedures on her because they said the risks outweighed the benefits, AND, she's not getting any more chemotherapy.  They said being jaundiced is not that alarming and neither is a high bilirubin number.  So even though she's still very yellow, they sent her home without any procedure after keeping her overnight unnecessarily. 

I have been with my mom since March, and it's so hard to see these rapid changes.  The growth by her neck, her extended stomach (we thought it was ascites but it turned out the ascites was quite minimal -- it was mostly her cancer), and now her jaundiced face and eyes -- these I see every day and I'm scared for her while at the same time determined to do everything I can to help her fight and stay healthy.  When we were getting discharged yesterday from the hospital, it felt like we were being turned out and away because my mom didn't want any more "conventional" treatment that they have to offer. 

So I decided to come seek help from you all.  Do clogged stents ever get unclogged on their own?  What does it mean that my mom's jaundice comes and goes sometimes (she's not as jaundiced when she wakes up in the morning, for example)?  I'm looking up homeopathic cures for jaundice (such as drinking cooked tomato juice first thing in the morning).  Could those work in my mom's case?  Also, what are your thoughts on Cholestyramine?  What were some of the benefits from taking it, and what were some of the side effects? 

Thank you.  Any advice, thoughts, and answers based on your experience would be greatly appreciated.

Caroline

Dear CF friends,

My mom's scan results from today were not good.  She didn't respond to Cabozantinib either (for those not familiar with my mom's case, she also didn't respond to Gem/Cis chemotherapy, which is how she qualified for this clinical trial in the first place).  The cancer has spread and there are now tiny spots in the surrounding organs in addition to the original tumor in the liver (which actually shrank a little on one side but got bigger in another).  She also has more affected lymph nodes that have also gotten bigger.

She is, of course, going off the trial.  They recommended FOLFIRI or FOLFOX in addition to local radiation therapy for her enlarged lymph node by her neck (which doubled in size).  We are taking it easy today and will weigh all our options tomorrow.  My mom said she feels really bad for the family -- especially me -- for letting us down.  I told her nothing compares to what she's had to endure because of the disease and that we'll find another treatment that works for her.

Dr. Goyal mentioned attending a conference on cc in Salt Lake City and said that it was sponsored by the Cholangiocarcinoma Foundation.  I felt extremely grateful to be a part of the group fighting tirelessly to find an effective course of treatment for this disease.

I asked the Dr. Goyal about immunotherapy as an option for my mom.  She and Dr. Zhu are in the process of applying for a clinical trial on immunotherapy for cc patients at Mass General.  She said it probably won't be available until about six months later.  She also told us about ongoing clinical trials on Nivolumab, which is a form of immunotherapy.  I just looked this up, and here is more information:
http://clinicaltrials.gov/ct2/show/NCT0 … amp;rank=6
http://clinicaltrials.gov/ct2/show/NCT0 … mp;rank=17
http://clinicaltrials.gov/ct2/show/NCT0 … mp;rank=23
http://www.medscape.com/viewarticle/821481
I just searched for Nivolumab, and not surprisingly, Percy and Willow have already posted on it on this site.  Good work, you two!
http://www.cholangiocarcinoma.org/punbb … =596680200

I was very down when I started writing this post, but I feel better and more optimistic about moving forward now that I've shared the news with you all. 

Many thanks,
Caroline

I agree with the other posts in response, but I also think Ben is raising a valid concern.  There are unethical employers out there who would not hire and even fire employees with cancer.  Also, when I googled "cabozantinib" recently, it was a little unnerving to see my posts on this board pop up.  I'm more than happy to share my mom's information for the benefit of the members on this board (and anyone else with this disease), but it was a cautionary reminder that anything I put out there (or here) is up for everyone to see.

Caroline

Hi Nikki,

I just got my mom's latest CA 19-9 count, and it's the lowest it has ever been since the initial diagnosis (42!).  But her CEA is way up and it's the highest it's been.  The medical team is perplexed too, and we're told that we won't know what's going on until the scan.  I'll post an update on the Cabozantinib post if I get it sooner than you do.

Caroline

15

(45 replies, posted in Good News / What's Working)

This is such great news!!  Thanks to Robin for sharing it with us, and thank you Lainy for being CANCER-FREE!!!

Caroline

My mom tried honey for her oral mucositis and it helped quite a bit.  I know she was told to stay away from honey when she was getting chemotherapy from Sloan-Kettering, so you may want to check with your dr before using it.

Here are some studies related to honey & oral mucositis:
http://www.ncbi.nlm.nih.gov/pubmed/23059917
http://www.sciencedirect.com/science/ar … 201300005X

17

(28 replies, posted in General Discussion)

Oh Lainy, I'm so sorry to hear this news.  I'm glad your daughter is close by and will give you support when you need it.  I'm praying for you and sending you much love and positive energy. 

A big hug,
Caroline

I'm answering my own question here.

These are the questions I asked my mom's medical team:

What does it mean that my mom's genetic testing came back with no mutations?  Does that tell us anything about what treatments are more effective than others for her?  How does that figure into the trial on Cabozantinib?  Does the test result affect the possible efficacy of the drug on my mom?

Here's their response:

These results have no impact on her current trial, either candidacy or efficacy. It simply means her tumor has no specific mutations. This is neither good not bad. And it really doesn't direct or guide future treatments other than to say she would not be a candidate for a trial using a drug that targets a mutation she doesn't have. We can discuss more at her next appointment. But bottom line it has no immediate implications on her treatment.

One more thing: I don't want to sound like the voice of doom & gloom for Cabozantinib.  If I haven't mentioned this before, I was told that there are people who have been on the drug for three months; meaning, they had good results on their 2-month scans.  So please don't allow my mom's experience to make you lose hope.  Besides, my mom did remarkably well on gem/cis, and that treatment turned out ineffective, so we really don't know how the drug is working for her.  I'm not sure if this break will delay my mom's scan, but it's scheduled for 3/11 for now, and I will be sure to keep you all posted.

Caroline

Hi everyone,

My mom's genetic testing from MGH came back (I had to ask for the results; they're not announced automatically) as showing no mutations.

Could someone please explain what means?  I also asked my mom's NP, but I thought I'd ask here too.  I'll post the response from the NP when I get it.

Many thanks in advance,
Caroline

Hi Nicole and Beth,

Nicole, it's great to hear from you.  Thank you for the update on your mom.

As of today, my mom will take a break from Cabozantinib for a week.  Her mouth sores got to the point where the pain from them was competing with the pain from the tumor.   I guess she could have taken numbing medications for it, but given her overall condition, she decided to follow the NP's advice and take a break for a week.

I will post updates on how my mom does during her rest week.  We were told that she can simply stop -- no tapering off necessary.

Caroline

22

(6 replies, posted in Grief Management)

Dear Kristin,

What you're going through is really hard.  I can't imagine trying to juggle my mom's illness with school.  Having said that, I've spent most of my 37 years of life in school and am working in one right now.  There are people at your school who care and who can help you.  Let your professors know what you are going through (if you think it'll be helpful), and as everyone has already said, get in touch with a counselor.  Most importantly, know that you are not alone.  My mom was diagnosed with cc five months ago, and I've been feeling quite unbalanced these days going from being very hopeful one minute to being inconsolably sad the next.  I've never heard of anticipatory grief before coming on this board, but it describes exactly how I feel.  Does it get easier and better?  It must.  Hang in there, Kristin.  I'm sending you the warmest thoughts.

Caroline

23

(6 replies, posted in Introductions!)

Dear Lojoo,

I'm so sorry to hear about your father's recent diagnosis.  For a second opinion, you might consider contacting Dr. Javle at the MD Anderson Center in Texas.  His email address is mjavle@mdanderson.org.  When I contacted him, he asked for a case summary of history, pathology and recent and old scans in a couple of pages, as this would be a great time-saving help.

Also, since it's closer, have you considered getting second opinions in South Korea?  I'm Korean and have family there, and they're supposed to be advanced in cancer medicine as well.  But for myself, I've been looking into alternative treatment options offered there for my mom (in fact, I was looking just this morning, so it's serendipitous that I came across your post now).  There's a place called BohyunDang Medical Clinic in particular that seems to emphasize a holistic approach to treating (and living with) cancer.  I'm not sure how non-Korean speakers could or would fare at the clinic, but you might want to contact them and see.  Their phone number is 02.501.8228, and the email address is webmaster@totalcancer.co.kr. 

I love that you're recommending a book in your introduction.  Thank you.  I haven't read it yet but ordered it right away using smile.amazon.com (thank you, Jason!).

Hang in there, and let us know if you have any other questions.  I wish you and your dad the very best.

Caroline

Thank you for the update, Kris.  I'm looking at all your old posts to see if my mom might want to look into the treatment you're on.  As it is, I've been telling my mom about your karaoke-therapy!

Lainy, you crack me up!  I almost spat out my tea because the image of anyone doing karaoke lying across a piano is too hilarious.

Caroline

About three nights ago, I called my mom to check in on her.  She's been sounding very out of breath and weak these days, but she sounded even more so than usual this time.  So I asked her what was wrong, and she said she was brushing her teeth.  That tells you how much energy she has these days on Cabozantinib.  Earlier that day, she went to a local lab to get her blood drawn because her WBC had been low last week.  I think that trip took a lot out of her, too. 

Given how my mom used to be able to exercise at least 45 minutes every day before going on Cabozantinib, I contacted her drs and nurse practitioner at MGH to let them know of my mom's condition.  The NP said that her blood count actually looks better this week but if my mom's having a hard time, she should stop Cabozantinib for a week and see if she feels better.  My mom said no.  She signed up for two weeks, so she's going to see this through until the scan.  So she's still taking the drug.

In answer to your question, Beth, the mouth sores probably started around mid to late first cycle.  She made a mistake of going to get her teeth cleaned because she thought the pain might be related to her teeth.  She really regrets having done that.  Her fatigue coincided with all the horrible weather in the northeast when she couldn't go outside to get her exercise.  So I would recommend that your mom keeps active as much as possible.  I think people react widely differently to the drug, though.  I hope your mom fares much better with minimal side effects.  Oh, and my mom's been doing a salt water mouthwash every day for the mouth sores, and that's been helping. 

It turned out my mom's constipation wasn't the main culprit for her pain.  Her constipation is now under control (she's been taking colace, miralax, and gas-x) but the pain continues.  (Btw, her dr told her to avoid suppositories for now given her WBC count.)  She started going back to her acupuncturist, and he's been the best source of help for The Monster Pain, which is probably where her tumor is (my mom describes the pain as her innards being ripped apart).

I have already started looking into the next set of options for my mom.  We were told that right now, the cancer that's spread outside is greater than the tumor itself, so she needs systemic therapy.  As far as I know, chemotherapy or drugs like Cabozantinib are her only options for that.  My mom already tried the first line of chemo (gem/cis), and now this.  Does she go back to chemotherapy?  Or try another drug and face the possibility of more side effects?  I'm not sure.  I'm trying not to worry too much before the scan, but I also don't want to be blindsided.  My mom's been mentioning a more holistic/alternative treatment as something she might want to pursue.  I'm completely in support of that, too.  I just want to see her pain-free, happy, and enjoying life.  For much of the recent past, she's been doubled over in pain or lying down. 

She has another follow-up appt next week, so I'll post another update then.  My posts are always so long!  I'll try to be more concise next time.  Also, Beth, if you want to email me privately, just click on my username and email me through the forum.  Oh, and here's something I learned recently: sometimes (actually, most of the times) it's easier to talk to a nurse or doctor on-call during non-business hours.  I called MGH multiple times over the weekend, and got calls back right away.