Christine808
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Posts posted by Christine808
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We have had a few bumps in the road since dad started the Tarceva. He was treated at the E.R. for dehydration on Dec. 27. I have traveled to Idaho again to care for him. He is not receiving the kind of care that is needed and this is mostly due to the fact that my Stepmother has Alzheimer’s. This has been a concern from the beginning, what occurred was my worst fear and yet, I wanted to respect the boundaries of their relationship and independence and monitor the situation. When I arrived he was in poor condition being weakened from the radiation and some side affects of Tarceva. He was not wanting to eat and not being offered nutritionally sound foods. I have been here a week now and he has made great strides. I implemented a meal plan that accounts for his poor appetite getting him better food more frequently is helping immensely.
I have taken him to the Cancer Center twice now and the team there is amazing. I hold such gratitude for their compassion and care. My sister will relieve me and then my stepsister will arrive to get more direct care for her mother. We continue to keep our hopes high and work well together. Our family is incredibly blessed!
I have a few little battles with Dad and his big man ego.
1) He refused to utilize a riding cart when going to the market. However, yesterday he was so courageous and put his pride aside and got on with what needed to be done. He owned that cart!
2) Purchased a Wedge pillow to assist with better sleep and he won’t use that, yet. Suggestions?
3) He finally agreed to get a mentor and that is huge I just hope he utilized the wealth of knowledge.
4) He wants to “come-out” on social media and told me he doesn’t know how. Suggestions?
Thanks all and many blessing to you!
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Aloha,
Dad's mutation was identified and as he is EFGR+ he began Terceva two days ago. His spirits remain high and we are learning to cope with this new normal.
Hope the Holidays are good to all!
-Christine
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Dad is finishing up week one radio therapy we hear from him each day and he is feeling a bit fatigued, and some throat dryness. He has support of great friends that are driving him to appointments. This is such a gift to all of us as he is not supposed to drive. Having him live in a rural area was a concern. Our fears have been lifted.
Aloha and Thanks for listening,
Christine
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Linda,
You are a grown woman and have every right to feel frightened. I'd suggest that you find out what side affects you should prepare for. My dad is about to begin his treatment and we are setting him up with what he might need to get through each step. Do something kind for yourself and know that there is support.
I wish you well,
Christine
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Tom,
Yes, the radio oncologist recommending that the sites in his lung, brain, and bone be radiated. He got the tattoos Wednesday and will begin therapy on Monday.
I relayed your recommendations for, test driving the wedge pillow. He had started shopping on Amazon, so he was very thankful for this good advice.
The best part of our conversation yesterday, was heading how positive he is about the pl.an for treatment, that his team believes that his cancer it treatable and he will have more quality time. With that said he told me of his plans for the future which include getting his Idaho camping permit, because there are trips he wants to take and things he wants to see. I'm so grateful for this.
Aloha,
Christine
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Thanks for the suggestions. Dad's referrals to his new care team closer to home is going very well. He is ver happy with his new Doctors. He is ready to begin radiation therapy next week, following with Chemo therapy.
Happy Thanksgiving, there is so much to be thankful for this community, research, hope and grace.
Aloha,
Chrisitne
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I'm Christine this is the beginning of our journey with Dad, who called me distraught after being seen for what he assumed was bronchitis. He was informed by the on call Doctor that he had lung cancer and had a six month prognosis. I was heartbroken for him and infuriated with the unprofessional and callousness of this statement for a few reasons. Firstly there was no biopsy this information was based on evaluations of X-ray images and a CT scan. Secondly, I have a very close friend that is battling NSCLC Stage IV. She is responding to treatment and I have informed myself about this disease.
My sister traveled to help dad get more information and get the kind of referrals to begin conversations about treatment options. His care has been excellent so far and we are very optimistic.
Here is my summary of the last two weeks. It was a great visit, ten days of loving, laughing and caring for each other, days of gratitude. I wasn't prepared to hear the raspy breathing that the fluid is causing for dad. I am thankful for his doctors and remain hopeful for him getting more quality time. It's difficult being so far away, Dad lives in Idaho and I am in Hawaii. I am already thinking of when I can go see him again.
He had a biopsy, finally, yesterday, soon we will know his mutation.
He is meeting with his oncologist and also with a redial oncologist. The cancer has indeed metastasized to his brain and they are recommending aggressive radiation therapy, ten days consecutively and begin chemotherapy infusions as well. We are asking if he can receive immunotherapy as well.
It's going to be a very long year.
We are keeping a binder of all his doctor reports and summaries up-dating as needed. Also compiling best practices for mitigating the side effects of any treatments. Included are meal plans shopping lists. balms, tips to help keep him as comfortable as possible.
If any of you have recommendations for a wedge that he can use for sleeping comfort I'd appreciate that.
Aloha,
Chrisitne
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Thank you all for the insightful and compassionate feed back. I am moving this conversation over to the a more appropriate forum.
Tom, Thank you for the great advice and encouragement.
Marie, welcome I love having your here. Our family is the foundation to helping each other through this incredible journey.
Mahlao and Aloha~
Chrisitne
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Hello again,
I have recently returned home from spending a much needed week with my dad. I am struck by his hopefulness about his treatment. He is most definitely not giving up. He was honest about the fear that this diagnosis has brought but had determined that this is not the end while he can fight. He is healthy and the Doctor is focusing on keeping him that way. He is returning to Oregon next week to undergo a Biopsy they were not able to identify the genetic mutation after they do so his treatment regimen will begin.
It was good to be there and prepare a hot cup of tea or rub his back and prepare a wholesome meal. It was hard to leave but my family needs me here and I am confident in the family support we have for him.
Thanks for all your kind words and support it is a great comfort knowing you are here.
Aloha,
Chrisitne
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Tom,
Thanks again, your words of encouragement mean a great deal.
I will be making a trip to see dad soon. He is optimistic about the treatment suggested. I will be sure to mention the port option. I have, unfortunately, had a few friends and family members go through Chemotherapy and they utilized a port.
I will keep you posted as he moves along.
Aloha,
Christine
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This is the news form the oncologist.
Stage 4 Non-Small CellAdenocarcinoma sub-type will be confirmed with further tests.
It has spread to bone – neck, back and lymph node. Lung is inoperable
They are doing another scan to look at his brain
Initial treatment suggested chemo + immune therapy working for as much longevity as he can.
They are looking at treating him in closer to home. For now he is remaining in Oregon and has Navigator Nurse trying to expedite appointments.
Thanks for listening and all of your concern.
Christine
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Dad will meet with an oncologist tomorrow going over PET scan and hopefully recommendations for treatment. I'll check in again soon. Thanks for the support and encouragement.
Aloha,
Christine
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So, today's news is they found malignant cells in the fluid they removed. PET scan tomorrow and oncology next week.
It's overwhelming.
Thanks for listening.
-C
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Michelle,
thanks for your words of comfort. This is just the beginning of a long journey.
Tom,
I meant to mention that we really only can all agree that there is a mass in his right lung and any "prognosis" will have to come with understanding the kind and type of cancer he has. Basically my sister told the doctor they saw yesterday that we want to start at the beginning. He had a thoracentesis today and will have another tomorrow. Friday is a PET scan. Things are moving in a better direction.
Thanks for your words of hope I have been looking though the resources at the link you provided before posting. I appreciate the wealth of knowledge shared here.
Aloha,
Christine
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Hello All,
I received a call from my dad last Saturday. He was distraught after visiting the local hospital for what he thought was Bronchitis, after the on call Doc looked at X-rays and MRI images he was informed that he had a large mass and fluid in one of his lungs and that he had six months to live. This has been incredibly frustrating, I live in Hawaii and dad is in Oregon. My sister arrived in Oregon to set up further consultations and schedule a biopsy. It is incredible that with the kind of progress in treatment that a Physician could say a person has such a beak prognosis. I am not delusional, I’m sure that this doctor knows his field. But there are options and we are actively exploring them. Dad will have his Biopsy this week and then we will have a better idea of what it is he is really facing.
Like other caregivers, the feeling of helplessness and frustration is bubbling underneath everything all the time. We have a supportive close-knit family and that is a great comfort. For now my sister is taking the largest burden and for that I am so overwhelmingly appreciative. I will be traveling to Oregon once treatment is recommended.
Thanks for listening and I will keep up dating as we know more.
Aloha,
Christine
Dad NSCLC Stage IV rallying
in NSCLC GROUP
Posted
An up-date is in order. We have decided over some long and heartfelt conversations that at this time it is best that I go to care for my father in Idaho long term. It is evident that he needs more direct care and ongoing support, this no longer feasible with intermittent stays with inconsistency in providers. We have all rallied to do this in the best way we could at the time. This means I will live at Dad’s place and my own family will have to carry on without me. I have an incredibly wonderful husband and two teenage daughters. This will be a great test for all of us, yet we agree that it is necessary. We are all willing to do what is necessary even if it’s not our first choice option. Along this uncertain path we will keep close, open communication and re-evaluate as needed.
Dad has suffered a couple of setbacks with the Tarceva; GI distress and nausea, primarily. At his last doctor visit he had lost another ten pounds and was ordered to cease Tarvceva for a two-week period. His oncologist hopes to achieve restoration of his appetite and relief of the GI issues while re-gaining some weight. When he is seen again they will evaluate if he will go back onto Tarceva.
He did get the bed elevated to an incline, Yay!
I found a great resource for revealing cancer on social media. My great dear friend sent this along, http://www.fredhutch.org/en/news/center-news/2016/01/coming-out-with-cancer-disclosing-diagnosis.html
I’m immensely grateful for my family and the closeness we share for their unwavering support and for the community here; your expertise and empathy are a great comfort.