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HrtofGold

Need Advice

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I have been very encouraged by all your stories. My boyfriend of 7yrs has just been diagnosed with StageIIIB lung cancer. We have appointments next week with the oncologist and radialogist to determine treatment. My question to everyone. Besides my support and strength, what else can I do for him. What are some needs he might have and want while going through his treatments. I have gotten many suggestions, but all from people that have not gone through this. Any suggestions would be helpful.

Thanks

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Hi hrtofgold, The best thing my husband did for me was to go along to the doctor visits and take careful note of everything the doctors said - I don't know how he did it, but he memorized what they said almost word for word. :)

So if I got down or depressed about treatment etc, then hubby would ask me exactly what was wrong. Whatever I said, he was able to counter with "Yes but remember what Dr X told you about this...." He used the doctor's exact words to help me remember. It got to be a routine everytime I got short of breath or tired out. And it helped.

I hope your boyfriend's treatments go well.

Barb

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I agree with Blaze ... although I'm the caregiver, I think my mom really appreciated/appreciates me going to all her appointments and taking some of the pressure off of her for remembering what the doctor says, understanding her treatment plans and medications, asking questions, etc. And I made all the calls to the doctors for questions and appointment times.

I also at the beginning kept a journal just jotting down how she felt, what appointments she went to, the med changes, etc.

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I agree with all of the above. My mom still asks me to be at every appointment. I took a note book where I could write down what the Dr said and also I would write down questions I had between appointments.

Just take ever step with him. Stay positive and have faith!

Please keep us posted, we are all here to support each other!

Sending prayers to you both,

Dana

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Hello and welcome..but sorry you had to find yourself here.

I know that with Mom the main thing was to just be around. She was very much an independent person and when the treatments would weaken her she wouldn't "ask" for help. But if we were there already, she'd lean on us. Luckily there were four of us...so maybe rounding up some people who are willing to help out as needed (so YOU can get away once in a while!) might be an idea.

Good luck and keep us posted on how you and your boyfriend are doing!

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I don't know that I have a lot to add. I tried to be at as many appointments as possible, and Mom definately appreciated my interpretation of the information as well as the company. I also agree with Missy, 'cause Mom is definately not one to ask for help, but would take it if I was there to offer.

Keep the faith

Jen

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Hi, HeartOfGold (I just had to spell it out), and a hearty welcome to the LCSC! Do you have a twin sister or maybe some clones floating around? There are a few more out here who need someone with your devotion and stability. Fortunately I'm not one of them, as my wife is as much of a jewel as you are.

I fully agree with everything that's been said so far, so instead of echoing that I'll try to touch on a couple of other points. Of course a lot of our suggestions right now have to be generic, since you didn't mention your boyfriend's age, state of health (other than lung cancer), whether he's experiencing any bothersome symptoms now, etc. And when you see the medical and radiation oncologists and can give us details on his diagnosis, additional tests scheduled, and plan of treatment, we'll have lots more to offer.

People react to a cancer diagnosis in different and sometimes unpredictable ways. Some take it in stride, some are devastated, and most are somewhere in between. Some like to talk about it with friends, their doctors, or even casual acquaintances who show an interest, believing it's therapeutic to get it out into the open. Others don't like to talk about it at all, even if they're not in denial, and it becomes necessary for the spouse or companion to take the lead on research and communicating with the doctors and their staffs. If he turns out to be that type, you can encourage him to open up, but don't count on it happening -- just love him, faults and all, as you've learned to do for the past 7 years (and vice versa, I would imagine :wink: ).

Another individual personality trait might become an issue after his treatment starts. I haven't had radiation, so I'll just limit this comment to chemotherapy, about which I know more than I ever wanted to know. Chemo, along with fighting the cancer, also takes a toll on normal body tissues, to a lesser or greater degree depending on the specific drug and the general health and genetic makeup of the patient. As one example, some of the drugs greatly retard healing, as a byproduct of interfering with the formation of new tissue, which is how they attack the cancer. At the same time, the body's ability to fight infection is compromised because the same mechanism interferes with the formation of white blood cells which do the infection fighting. You can see where this leads. To prevent a serious infection, which could interrupt the chemo schedule and even land the patient in the hospital, it's necessary to take exceptional precautions to avoid cuts and scrapes, and to quickly treat and cover those that do occur. This is not easy for the typical macho male. But the period when one is on a chemo regimen is not the time to be stoic. Even a little hypochondria can be a good thing. I felt silly showing my oncologist the blister on my foot that had opened, or the place where my port incision had become irritated and red, but he took these "little" things very seriously and I was put on a course of oral antibiotics three separate times during the four months when I was on the "hard" chemo. But it paid off, as I never had an interruption in treatment.

So those are a couple of things to add to your list. And tell your boyfriend to not worry about this little cancer thing, he's an incredibly lucky guy!

Best wishes and Aloha,

Ned

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Going with him to appointments is a great idea if he wants you to and if you are able to take time off to do so. I travled all but a couple of appointment alone and on occasion I would take a small hand held recorder. That way if I missed anything or some well meaning friend thought I had misinperpreted something then I had the whole discussion on tape. I also have always been way to independent for my own good and absoutely could not bring myself to ask for help. Some friends just knew what needed to be done and stepped up to the plate ... the other stuff I somehow muddled through. Keep a positive attitude and Expect A Miracle.

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You've already received some excellent advice. I'm so sorry you have a reason to ask.

I live 2,000 miles away from my sister, but when I went to Colorado to visit, I always went with her to her chemo appts. Sometimes they can be quite lengthy and we tried to make it as bearable as possible. I would bring funny books and read to her, we'd talk about everything under the sun, and yes, we'd discuss the chemo as well. We refused to "ignore the elephant in the room". I know she enjoyed having company during these treatments. When I was not there, her hubby or friends would join her. Just a suggestion. Sending prayers your way. Ellie

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Hi!

You've gotten some excellent advice here and I'll add one more. Don't forget to live your lives. Let your BF gauge what he is capable of and what he isn't while undergoing treatment, but it's ok to have conversations where LC isn't even mentioned.

Susan

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Your strength and support and just being there will be really important. I spent alot of time doing research and going to the appointments with Ger. He didn't want to know anything so I was kind of the one that he relied on for what pills to take and what was next. All the best in your new fight. Heather

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Thanks to all of you and your caring words. One of the questions that was asked was how old and what kind of cancer. Well he had his biopsy and the Dr's staged him as a stage 3B non small cell. After the surgery for the biopsy, he was informed his Thoracic surgeon was moving to another state. He was thrown for a loop as the previous Dr. we had seen was not very kind or caring and here he thought he found someone he could trust. So we got a appointment with a new Thoracic surgeon and the Dr's who did the surgery was also there. They confirmed stage3B cancer, quarter size tumor in left middle lung and lymph nodes in the center of the chest and collar bone are cancerous as well. Not a candidate for surgery at the time since it had spread to the other side. Had meeting today with a Oncologist and Radiologist at Dana Farber. Both Dr's were unable to give us any specifics to what his treatment would be until a MRI of the brain was done to see if it had spread to the brain. My heart goes out to him, after a month since we new it was lung cancer it just seems just when we get closer to treatment another road block. We were told it would be another 2 weeks before he would start to treat, how fustrating. What we seem to find is when we go to the appointments they never seem to have all the information. I was wondering if that has happened to anyone else? Well MRI tommorrow, I can feel good news :D. Update soon and thanks again from my heart for all your good wishes.

Here is a little about him

43 yrs old

smoked for 30 yrs and has been smoke free for 30 days!

only symptom was left chest pain.

diagnosis stage3B

Thanks again

HrtofGold- Lynn

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"HrtofGold" ...What we seem to find is when we go to the appointments they never seem to have all the information. I was wondering if that has happened to anyone else?

Yes, that happened to me a couple of times until I got the onc's staff "trained." :wink: This consisted of calling the day before my appointment to confirm the time, then saying I had such-and-such a scan x-days ago and the doctor will be wanting to have the results before I see him tomorrow, so could you please check. If things begin to slip I'll start doing that again.

Aloha,

Ned

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Yes, it has happened at my pulmonologist’s office. Now, I call a few days before and ask his staff if they have the latest image reports from the imaging center. I also get my own copies of all imaging reports so if needed, I could also bring the reports with me to the doctors office.

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If he is going to a comprehensive cancer center, there would be less fumbling and miscommunication. Anyway, it is good they are doing the mri. If they find brain mets, I think they will make that a priority for treatment.

I also act as a coordinator for my treatment to make sure all data is available at my appointments. I have a copy of my latest scan report and a cd of the scan when I go to my appointments just in case there is a slip-up. I have the scan reports faxed to me when they are ready and the cd arrives in the mail a day or 2 later. I have also found that at times, stuff falls between the gaps, even at a major comprehensive cancer center.

Don M

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The time between diagnosis and treatment can be expecially stressful. You are still in shock from the diagnosis and you want to begin fighting the cancer as quickly as possible. It's not unusual for it to take a few weeks to figure out staging and then best treatment options.

Susan

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