Not Again

fella55 · New User Joined: 28 Oct 2009 Posts: 7

I just learned on Monday that my mom has Stage IV Pancreatic cancer. She has a 4cm lesion on the head of her pancreas and the disease has spread to her liver, abdominal wall, bowel, and pelvic lymph nodes. We are scheduled to meet with an oncologist on Monday to understand her options

I am simply stunned that she has been diagnosed with this disease, especially given that my father just passed away six months ago from prostate cancer at age 74.

I was really hoping that she would have some quality years enjoying her life (she is 72), as she had spent a number of years taking care of my dad. My mother is one of the most angelic and caring people I have ever met in my life. She is always such a wonderfully upbeat and happy person and has always been a bundle of energy. Everyone that hears that she has contracted this disease cannot believe that this has happened to her.

I am an only child so being so close to loosing both of my parents in such a short time span has been quite a shock and to be honest I feel incredibly vulnerable. But this isn't about me, it is about her. I want to do everything possible to make sure that the time she has left is of the highest quality possible and that she is as pain free as possible.

On the bright side, we are both deeply Christian and find tremendous comfort in knowing that regardless of what happens she will be with God.

I am so grateful and blessed that this forum exists and that it is providing me with the opportunity to share my thoughts and feelings with so many others who have and are traveling this road.

Thank you for reading my story and thank you for your support

My prayers are with you all

Adagio7780 · Posted: Thu Oct 29, 2009 11:18 am Post subject: Re: Not Again

And our prayers are with you, fella55. When I was diagnosed, my wife and I talked about the fact that my illness doesn't guarantee health or happiness for a while for our loved ones. This, sadly, is the situation with losing your father so recently and now your mother's illness. So we have lived on eight months, during which time our various kids have bought a house, announced our first grandchild, lost a job, had a devastating car crash, and two other family members have become gravely ill. During the difficult days ahead, remind yourself often of your mother's love and faith, and let that carry you through as best it can.
_________________
Man tracht, Got lacht (Man plans, God laughs)

fella55 · New User Joined: 28 Oct 2009 Posts: 7

A7780 thank you so much for your post. I have been following your story on the forum and you are an inspiration. My prayers and thoughts are with you.

You are of course 100% right. I did have the irrational expectation that after my dad died, my mom would be around for longer and nothing bad would happen so soon. Life, unfortunately does not work that way.

My mom and I have spent a lot of time talking about this, and she has said that she doesn't want to dwell on her disease, but rather spend her time with as much love and laughter as she can. I intend to do my best to make sure she gets a lot of both

Take care and God bless you

fella55 · New User Joined: 28 Oct 2009 Posts: 7

We are off to see the oncologist tomorrow for my mom's first visit.

She is adamant that she does not want to take treatment if it hinders her fulfilling her "bucket list" - Her list included going sky diving which we did yesterday and which she loved!

My mom is very concerned that any treatment will cut into the quality time that she has now in exchange for more time of dubious quality. However, she is thankfully keeping an open mind, so we'll see what the doctors say tomorrow. At the end of the day it is her decision and I will of course respect it whatever it may be

Adagio7780 · Posted: Mon Nov 02, 2009 9:58 am Post subject: Re: Not Again

Skydiving! Incredible! Your mom put a smile on my face.

I am struggling right now with how much of the treatment to continue, and the problem is, of course, the great unknown. If the mets are in the liver, an aggressive treatment may not be called for, but for goodness sake, don't take my word for it.

We'll be waiting for the results from the doctor visit. Good luck.
_________________
Man tracht, Got lacht (Man plans, God laughs)

fella55 · New User Joined: 28 Oct 2009 Posts: 7

A7780, she really is an amazing woman. Her next "bucket list" item is to ride in a hot air balloon in Napa. She really is a kick in the pants. She has such a British sense of humor and just makes fun of this all in a way that only the Brits can.

We visited the oncologist at the Baylor College of Medicine today, and he spent a couple of hours in his office with us. After a long series of questions on her medical history and a brief physical exam, he told us that my mom is in much better physical condition than many of the patients that come into his practice.

As far as her pancan goes, she does have stage 4b cancer. Her CT scan indicates a 3-4cm lesion on the head of her pancreas, small tumors on her liver, tumors on her abdominal wall and around her bowel, and her pelvic lymph nodes also seemed involved. Symptomatically, she has what she describes as a "dragging" pain in her lower abdomen, but other than that she is fairly asymptomatic.

When I asked the doctor his prognosis with and without treatment he said (with all the usual caveats) that the average survivability without treatment is 4-6 months, but that he thought my mom might get a year. With treatment he said folks on average have 6-7 months, with 25% getting 9+ months. He claims to have a couple patients with 2-3 years under their belt

Given the results of her CT Scan, I was surprised (albeit pleasantly!) at the doctor's upbeat assessment.

There are two treatment options being offerred to her:

1) Standard Gemcitabine + Tarceva 7wk on /1wk off cycle followed by 3wk on/1wk off cycles

2) Clinical study with the above + a third experimental antibody (assuming she is not in the control group)

At this point my mom is debating whether it is worth being tied down to chemo and burning quality time up front in the hope of gaining what could only be a few months on the backend of her life. She is very determined to make sure she lives what time she has to the fullest and is very much focused on quality vs quantity.

I understand her position and am trying to be careful not to influence her one way or the other. I am basically being her sounding board and trying to make sure she asks herself and others the right questions. I have made sure that she understands that she doesn't have to keep taking chemo if she is not happy with the results (i.e. it might be worth at least giving it a try to see just how it effects her)

Tomorrow we are off to her GP who wanted to chat with her after she had had the opportunity to visit with the oncologist. I think this will be good for her as he understands her mindset, but also will make sure she has/is thinking through each scenario fully.

fella55 · New User Joined: 28 Oct 2009 Posts: 7

We had a great meeting with my mom's GP today. I think that she is going to elect to try the Gem+Tarceva treatment option. To be honest, I was concerned that she wasn't even going to give it a chance, but as her doctor said, there is nothing lost in at least trying it.

His point was that she could stop it at any time if she felt it was not giving her the quality of life she wanted, and that quite likely she would find that it would actually improve it. He also reiterated that he felt that my mom is in good shape and that the cancer was detected at an early stage despite the fact that it has metastasized. So he essentially agreed with the oncologist and felt that she has every chance of having a good outcome within the parameters of pancreatic cancer.

I think what may have also helped convince my mom is that her doctor told us today that he himself is a survivor of both thyroid cancer and melanoma. He was very frank and honest, and wasn't engaging in "happy talk" (as he himself put it himself). His point was that one should be optimistic in attitude and try if possible not to let the cancer become defining and/or controlling. I came out feeling very reassured that he is committed to being with us at every stage of this journey, and I think that mom felt the same.

The next issue that we face is where she will get the treatment.

She has worked at a major hospital here in Houston for many years and is very comfortable getting treatment there (everyone knows her etc). Plus she has a large group of friends in the area. I on the other hand live out of state and my wife an I are her only close family. So she is having a hard time deciding whether to get treatment here or to come out to where I live and get treatment there.

We have a call into the oncologist to see if she can split her treatment if necessary i.e. get a few rounds in Houston, then over the holidays continue getting rounds at a cancer center where I live.

I don't know if this is practical or even possible. Would love to hear from anyone who has any experience in this area

My prayers and thoughts with you all

P.S. Writing on this forum is so wonderfully therapeutic. Thank you all for allowing me to share this journey

LittleMe · Regular Joined: 28 Sep 2009 Posts: 21

Hi Fella

So sorry to read your news.

My dad died just over 18 months ago - he'd initially had cancer at 54 which returned when he was 62 - he had 2 courses chemo which worked very well but died at 64 suddenly and between appointments.

Then, one year later just as mum started to look to the future - she was diagnosed with pancreatic cancer. She is in hosp at the mo. waiting for a stent to releive jaundice. They tried 2 procedres on Fri but couldn't get it in due to the blockages. She is 64 also right now. She is due to see her Consultant to review and look at possibly more chemo in November but they need to releive this jaundice as it's affecting what nutrients her body can absorb.

I have a brother and we can share care of mum and took comfort in one another after dads death. But I know the utter shock and disbeleif you feel when you lose one parent, then you get bad news right after about the other. When dad died, mum told me she had enough savings for 15 years - I told her I thought that wouldn't be enough (as her mum and her Grandmother lived for many years after 64)!

All I can say is I hope you find plenty of support here and you get very good treatment. I decided a while ago we would move Heaven and Earth for my mum if needs be - we have 2 little children but we make sure if mum wants or needs something that she gets it. I will not have any regrets that way.

Look after yourself. Littleme

fella55 · New User Joined: 28 Oct 2009 Posts: 7

Hi Littleme,

Thank you so much for sharing your story. I'm so truly sorry that you are having to go through all of this. For what it is worth, hearing from someone else who is going through a very similar circumstance is so very comforting. I someone feel less alone.

I know that what I am feeling is nothing, but nothing, compared to what my mom or anyone else suffering with this disease is going through, but this illness does have a profound effect on everyone touched by it, from the person afflicted to all those loving and caring for them.

What I'm finding difficult to cope with is knowing what is in store for my mother, because I so recently went through it with my father. Cancer is just such an awful disease. Until you are touched with it, you cannot understand what it does.

Right now I'm back home, and I am feeling terrible that my mother is alone in Houston (even though she does have many wonderful friends there who are so supportive). I am also fortunate enough to be able to get back there very frequently. We are also looking to see if she can split her chemo between Houston and here so that she can come and spend time with my wife and I, and have a change of scenary. Happily that looks completely feasible.

If there is any silver lining to having lost dad so recently, it is that we do know what lies down this road and that experience is helping us plan through and cope with my mother's sickness.

Take care and my prayers are with you

LittleMe · Regular Joined: 28 Sep 2009 Posts: 21

Arrgh fella I could have written that myself.

I really do wish you and your amazing-sounding mum the best. I agree with your para about experience - if there is any silver lining perhpas it is that we are perhaps a little more knowledgeable now.

fella55 · New User Joined: 28 Oct 2009 Posts: 7

My mom just completed two weeks of Chemo (Gemcitabine) and has not been tolerating it very well. I know it is still early in the cycle, but she is having some nasty side-effects including: consistent nausea/vomiting, rash, chronic constipation, loss of apetite, and fatigue. In fact, I just bought her home from a two day hospital stay for chronic constipation - I never thought it could cause so much pain and be such a health hazard.

I think that she might be under the possibly false hope that the chemo is going to somehow make her feel more energetic "later on". I fear that it is only going to make her feel weaker and weaker. In the short time that she has taken the drug she has completely changed. Where she was talking about all the things she wanted to do before passing from this world, she is now just trying to get through the day.

I completely respect her decision to take chemo, and I am painfully careful not to try and influence her, but I have got to admit I personally don't see how this can be benefiting her. She has stressed again and again that her quality of life is important and I fear that she is holding onto false hope. All I see so far is a very dramatic decrease in the quality of her life.

I suppose that much of my frustration may simply come down to watching her progress in her disease. Perhaps I am taking it out on the chemotherapy when she would be even worse off without it? I would appreciate anyones insight into this

Thanks

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