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Wife Just Diagnosed w/ ES SCLC - What Can We Expect?
My wife received the following diagnosis yesterday: Primary malignant neoplasm of lung, secondary malignant neoplasm of liver, secondary malignant neoplasm of vertebral column. Four months ago she had a chest x-ray performed and no anomalies were noted.
We have surmised that this is likely Extensive Stage Small Cell Lung Cancer.
She has been referred to a local oncologist and a PET-CT scan has been ordered by our doctor.
Last evening we requested an appointment at the Mayo Clinic - Jacksonville at the suggestion of a friend.
Can anyone tell us what we can expect over the next few days/weeks/months?
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Bob- I'm sorry that I'm late answering this. I had a meniscus tear mended and haven't been on in a few days. I'm sorry to hear that Liz is having a rough time. Cancer metastasis can be extremely challenging and tough, especially if it goes to the bones and about 30%-40% of lung cancer patients with advanced lung cancer have this complication.
At this point keeping Liz as pain-free as possible is extremely important so she can feel as normal as possible. Having more nourishment will help with this too.
How are you doing? Isn't today a Chemo day?
Merry
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2 ReactionsMerry, yes today was Liz's first chemo and auto-immune therapy and everything went pretty well. She is still not eating and the Oncologist is prescribing her an "appetite enhancer" to see if this will help. She has not eaten anything solid in 4 days now and has only consumed a single protein shake each day. She has no sense of taste and will not eat for the sake of eating. I am very frustrated but I cannot force her to eat.....
Things are starting to build up on me and I am trying to keep a level mind, but have been waking up around 1-2 am each morning and unable to go back to sleep. Our youngest daughter will be coming down tomorrow and staying for the weekend so hopefully this will help.
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1 ReactionBob- Have you talked frankly with Liz about what will happen if she doesn't help herself? And if she wants to die? I know that this is a hard question to face for both of you. If she does want to die, at this point, then her hospice care will change to keeping her as pain-free as can be and as peaceful as possible. Her treatments will stop unless they will keep her comfortable. This is what she might want because she has cancer throughout her body but might be afraid to talk about it?
I can imagine that you aren't sleeping. This has happened like an unexpected avalanche and must be very hard to understand and frustrating.
Are there any questions that you are asking yourself that I might help you with?
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8 ReactionsBob- Another week has gone by. Has Liz begun to eat a bit more? How is she doing with chemo? Can she tolerate the side effects?
If I remember correctly I think that your youngest daughter is visiting this weekend. Perhaps you can get some much-needed rest and time alone, outside if it's nice outside.
Best to you,
Merry
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5 ReactionsLiz is vomiting from her chemo and still refuses to eat. She has anti-nausea pills, but they do not seem to be working for her. Both myself and our daughter have been on her to eat and I made it plain that if she does not start eating, she will be in the hospital soon. It seems that everything she eats comes back up in a short time.
She will be going for a hip exam next week as it is really paining her now. While she can still get around with a walker or cane, she is very slow and complains about the pain it is causing to be up and around.
I am still up most nights. Lately it is the worry about getting wheelchair access to our home. We are approximately 62" off the ground and it looks like it will take an extreme ramp to get her up here. I have started checking on selling the house and moving into a ground floor apartment, but there is very little available in our area.
Sounds like a bad soap opera, but this is our state of affairs...... Thanks for checking up on us!!!
I'm so sorry to hear that Liz is having difficulty with her chemo. I was afraid of this and with no food to help absorb acids she must feel extremely ill. Do you know how much weight she has lost? What do her doctors say?
May I make a suggestion that you back off pressuring her to eat? This really doesn't work, as you are seeing, and may make matters worse. I think perhaps that the stress she is feeling increases with the pressure to eat? I'm not sure that she will eat no matter what you do.
I wish that I could talk to her. Do you think that she would be willing, in a private message maybe?
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3 ReactionsMerry, I will ask her if she would like to get up with you.
She seems to be more active first thing in the morning and then after taking her meds sleeps most of the day. I am able to get her to drink her protein shake each morning, but that is about it. She has lost about 25 lbs since this started in late - February.
We will be seeing the Radiologist tomorrow afternoon and tell him what is going on, maybe he has some suggestions to help her out.
One of my biggest challenges, other that the obvious ones with her cancer, is that we do not know how much longer she will be able to walk. I have been looking into wheelchair options, but the height of the house above ground level is a real road block. I am afraid that she will lose mobility before I solve this issue and then we will really be in a fix.
I want to that you again for being there for us and keeping in contact. It means the world to me!!!
Bob- We have this problem at our house too. My husband mentioned something about an outside elevator. Now his eyes/mind might be bigger than what is realistic but it might be something to research.
Good luck with the radiation appointment this afternoon. I'm anxious to learn what he tells Liz about her weight loss and what this might mean for the future.
Bob, when I first learned that I had cancer there were few groups and no one to really talk with. The group that I did find was run by a nurse who wasn't interested in talking about anyone else except her ex-husband.
I am very warmed by your appreciation, more than you know! I have been blessed to have survived 24 years of lung cancer. I have a wealth of personal information that just might help someone else have an easier time, give someone something that I didn't - even for a short period of time.
Lung Cancer is a very tough cancer where the odds are much better than they were 10 years ago but they still aren't that great. If I can help someone's journey then I feel destined to do what I can. It is definitely an honor for me. I have been with a close friend and my sister-in-law who have died from Cancer. I have held my mom and held my twin sister in my arms while they journeyed forth. And someday it will be my turn. It is always my honor.
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4 Reactions@rlogan and @merpreb I’m going to jump in here about retrofitting wheelchair access to one’s home because my husband just did some research about this for friends. They thought that it would be a simple and inexpensive solution to simply have him build a ramp. But there are specific requirements for building codes and safety with respect to incline, length necessary to maintain the incline, resting spot according to length, etc.
For our friend, the more efficient, safer and cheaper solution was an elevator, which they purchased second hand.
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4 ReactionsWOW! By looking briefly at google they are not as expensive as I would think. Thank you so much for this, Colleen.
Bob- Does this look like something that interests you?
Merry
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