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My Mom was recently diagnosed


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My Mom was recently disgnosed with non small cell squamous lung cancer, presently staged at 3A. Having been extemely healthy through her life this is understandably freaking her out. We're just about ready to start chemo and radiation and she's told us that she no longer wants to have treatment...that she'd just like to live her life out however long this may be. The doctors have suggested giving her a few days to digest all of the very sobering info that they have given her/us....what am I to do if she decides not to go ahead anyway? I'm feeling like my brain is on overload, I can only imagine what she's feeling, but I literally do not know what to do at this point. Somebody please tell me about prognosis for this type of cancer (we've been told 20-30%) and about quality of life. Although the doctors feel that her being 80 would have no bearing on how well she can tolerate treatment...she's seeing things differently..I don't know where to turn for her or for myself. Please someone, offer me something tangible to hold on to.

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Hi, welcome to the group! I doubt if you'll be hearing much from our mainland friends until Wednesday morning, but the night is still young out here in Hawaii, so I'll start with a couple of general comments.

We place very little importance on the prognosis figures some doctors like to quote, because these numbers are just averages/medians for a large group of people with a similar diagnosis, and there is a GREAT amount of variation from one end to the other of any such group. The data may be useful to Medicare bureaucrats or insurance executives in deciding what treatments to cover and for whom, but they are essentially meaningless for any individual patient. Many of us here have long outlived any prognosis figures we may have been given upon diagnosis, and some of us (like myself) made it clear to our doctors that we were not interested in that sort of "information." Also, there can be a lot of confusion as to what a particular prognosis statistic is trying to convey. It can be given as a percentage of people with a certain diagnosis and stage who are expected to be alive at a certain point (1 year, 2 years, 5 years, etc.) or it can be given as a period of time (12 months, 18 months, etc.) that half of the people with that diagnosis are expected to be alive. It's easy to miss the "half" part and think that "I" have 12 months, 18 months, or whatever. Or with the percentage method, if we're told that our group has a 25 percent chance of surviving to x-number of months/years, we see we're on the short end of the stick and start to feel defeated already. The fact is, there will always be people at the GOOD end of the curve, and if your mom is in good health aside from the cancer, there's every reason to believe she can be one of them.

The other comment is about treatments. If your mom has just received the orientation session on side effects, and the person doing the presentation was the detail type who wanted to cover every eventuality, I can understand why she may now have some resistance to starting treatment. But people are highly individual here too, and all the possibilities given are just that, possibilities. Some people breeze through with little more than fatigue, while others have serious side effects which require the delay or termination of treatment. If you can tell us specifically what drugs are planned and the schedule of treatments for radiation and chemo, members here can give you their first-hand experience with the same combination. Also, if your mom has spoken to friends who went through chemo 10 or 15 years ago, it's important for her to realize that there have been some remarkable advances made, especially in terms of "premeds" given by pill or IV at the beginning of the chemo session. Nausea, in particular, is now rather uncommon.

A fall-back position would be for her give it a try, knowing that she can quit if it becomes too much. If her clinic is anything like mine, there's camaraderie and mutual encouragement among the patients, and the staff goes out of their way to make everyone comfortable. At my clinic, the chemo room has the best location on the floor, a corner room with wrap-around windows and a panoramic view from Pearl Harbor to the Waianae Mountains.

Now on the other side of the coin, we also have plenty of members who value quality of life over a little more longevity, and I'm one of those too. We can discuss that someday, but we're not there yet. Best wishes and Aloha,

Ned

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Hello there,

I can only add "Ditto" to Ned's wonderful explanation. If at first his letter does not sink in, then read it again. Truer words have never been spoken.

Sincere best wishes and support to you and your Mom and family. It may seem a bit of a challenge right now but you are very strong and will manage. You found this web site, which will be a true help for support and encouragement.

Take care and keep posting.

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I am so happy to see your Post today! We did meet in chat last week so i do know you already. I a, sorry to hear about the whole treatment thing going on. Now Ned has given some wonderful insight into treatment planns and options so I can not add anything there but I can add that if you seek info and experience and inspiration and knowledge based on not taking treatment the forum entitled, "the path less travelled " is where you may want to look around.

Dean Carl is the "Patron Saint" of that forum and all though Dean is nont with us, He did fight and challenge Lung cancer in so many ways. His writings are words of wisdom and there is also so much more to read also. Now I am not going against anything here about treatment options so do not read to much into this suggestion. It is moms decision adn we can influence it as much as possible though. The good news and the Insiparation forums are also good places to start. They wil get your mom and yourself emotionally ready to figh the disease.

Hugs and Prayers and sorry we missed you last nite but am glad you have posted. It is a big step to take!!!

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Hello to Bosses wife,

I second Lorrie's compliment regarding NED's explanation.

Thank you, NED, for hitting all the points about stats. I needed a "refresher course," as well.

Dear Bosses Wife: my husband was diagnosed three and a half years ago with NSCLC Stage IIIB, and has had about six or seven different regimens of either/or, or both radiation and chemotherapy.

He has enjoyed his life, not ever experienced nausea, never been disabled, and thinks the treatments were very worthwhile.

He continues, thankfully, to be able to take outings, work in his yard, repair things, and the only major change in his life is that he takes daily naps on days when he feels the need.

He is going to be 78 in October. He was 74 when he was diagnosed. He has been generally healthy and very active.

There is always hope. Hope has many facets and at different intervals in this cancer journey. I hope that your Mom gets to change her mind and join in the treatment hope.

Ultimately, it is the patient's own decision, but here is one survivor who has taken the treatment route, and is glad that he did.

Barbara

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I have to agree with all of the above. And, I know you don't want to hear this, but ultimately, it is HER decision.

But - I made the huge mistake of asking for a timeline when I was dx'd with Stage 4 LC. And let me tell you, I didn't like what I was told. But guess what, I am almost a year past that expiration date, and I am still doing everything I want to do. I garden every day, digging up plants and hauling bags of mulch, etc. I feel really good right now. I go everywhere and anywhere I want to go. I am just a little more tired. And, I have several more chemo options to fall back on down the road.

Fortunately for most of us, we are not the stereo-typical picture that most people think of when they hear "chemo patient". I remember in the beginning thinking I was going to be skinny as a rail, cheeks sunken in, crawling on my hands and knees!! Nope!!! But maybe thats what Mom has in her mind.

Have you expressed her concerns and feelings to her doctor??? Maybe he can put her on a chemo or adjust her dosage to help minimize side effects. There are chemos like Avastin that are practically a cake-walk as compared to others.

Whatever her decision, I will keep both you and her in my thoughts and prayers. Please keep us posted on her progress.

Hugs - Patti B.

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After finally falling asleep at around 2:00 AM this morning I awoke to purposefully check my email. Thank you so much for your insight and words of encouragement..hopefully this will be a better day for Mom and I'll be able to share all of your insights with her. I wish she were computer lliterate herself, maybe during treatments, should she decide to go ahead, I can teach her!!! I will stay in touch and thank you all again.

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Welcome here. Lots of good advice you have already received. I have been through first line treatment..sailed through radiation and minor side effects from chemo. All quite doable but it is not the same for all. Perhaps your mom would consider just starting them and see how that goes...she might find it quite tolerable. Tell her not everyone suffers..they just like to scare you about all the possible side effects. It is ultimately her decision, but if she has lived this long I bet you she wants to make it even longer. I wish you all the best. Keep us posted.

Sandra

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Welcome! I don't have anything to add to what's been said. I agree with them all. You might consider the fact that if she were to try treatment and didn't like it, she could quit. On the other hand, if she doesn't and later wishes she had, the cancer probably will have progressed.

Please keep us posted.

Muriel

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Mom called me today and told me that she'd go ahead with the treatment. She sounded so deflated and defeated...second phone call sounded much better. I so appreciate all of the support from you all. I told her to just start the treatment and try, that we're all there for her. I will share all of your good thoughts and advice with her when she's in a better frame of mind. Friday we go to finish up the radiation work up and Monday she starts treatment. Keep your fingers crossed.

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Thanks for keeping in touch....the meds planned for Mom's chemo are Carboplatin (Paraplatin) and Paclitaxel (Taxol). Today she sounded great...if she's up to it on Saturday, we may even go out to "play"....treatments start on Monday. What a scary ride for all. I truly appreciate everyones support. By the way, my name is Susan...

Thanks again.

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I had taxol and carbo in 2003. It's tolerable. Be sure that she takes her anti-nausea meds before she feels sick and that she drinks lots and lots of water. Little meals (snack foods) were better for me than trying to eat three meals with my hubby.

Let us know how things go.

Muriel

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I did Carbo/taxol/avastin when I was first dx'd in 2006. Had no horrible side effects. Did have some bothersome tongue-tingling/metallic taste in my mouth but buy plastic silverware for her touse if that happens. She will probably have to get a Neulasta shot the day after chemo.

Wishing her lots and lots of luck!!!

Hugs - Patti B.

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Hi susan

Welcome to the group.

My husband just finished up 7 rounds of Carbo/Taxol and 35 radiation treatments to the chest. He is a stage IV. On Monday he will turn 73 and Tuesday will mark 6 months from diagnosis for him and he is still going strong. He still works part time as he had before diagnosis and has only missed 2 days of work in 6 months.

I am happy to hear that youtr mom has decided to go ahead with treatment. Definitely keep us posted on how it goes.

Denise

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Hi, Susan, thanks for the info. Taxol/Carboplatin is a very common treatment for NSCLC -- I've heard it referred to as the "gold standard." That's what I had as a first-line treatment, along with Avastin, which is frequently added for adenocarcinoma (my cell type) but not often for squamous. Oncologists and chemo nurses generally have a lot of experience with Taxol/Carbo and there aren't many surprises. They will be watching closely for any allergic reactions during the infusion, especially the first one, but the only thing I felt during any of my infusions was drowsiness when I got the Benadryl premed. Some people use that as an excuse for a nice nap, but I was always anxious to regain my alertness so I could watch my DVD movie!

Side effects generally don't begin until a day or two after the infusion, and fatigue is probably the most common. If you read my treatment summary, you'll see several references to skin problems such as foot blisters, but that seems to be more of an individual thing for me, and fortunately for others it's not that common.

I didn't have radiation, so I was on a 3-week chemo cycle. Those getting radiation usually get a smaller chemo dose but more often, to even things out and avoid some of the ups and downs of the 3-week cycle. Is radiation still part of the plan for your mom?

Have a great weekend! If any questions come up, be sure to ask, otherwise let us know how things go Monday. Aloha,

Ned

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Hi Susan,

I am glad to know that your Mom has decided in favor of having the treatments.

Bill began with weekly carbo/taxol 3 1/2 years ago. It was very tolerable (given concurrently with daily radiation).

The one thing that cannot be stressed too much is the intake of fluids. It is so important for flushing out the kidneys.

In Bill's case, I believe, it helped him not have problems. Since he is an "older" fellow, kidneys can become a concern.

Thank you for updating us, and may your Mom feel more secure once her treatments begin. We felt so much better once a plan was in place and Bill was able to see that it could go well. The scariness lessened.

Barbara

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Hi! Once again thanks for the responses. Mom will be getting radiation 5 days a week for 6 weeks. Chemo is on Monday and radiation Monday through Friday. The doctor told us today that he has come up with a really good plan for her treatments and feels really positive about them. Mom keeps asking and emphasizing that no one is telling her for sure if her hair is going to fall out. The doc said that there may be thinning. I explained to her that each person is an individual so they cannot really answer this questiong definitively....or can they???? Let me know. I'll probably be a constant fixture on this site for at least the immediate future....will try not to be a nuisance.

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Tom had carbo/taxol and he started losing his hair about 2 weeks into the first treatment. Mind you he did not have much to start out with but what was there is now gone. It is also now starting to grow back.

Denise

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I've heard of exceptions, but the majority of people on Taxol DO lose their hair, starting about 2 weeks after the first infusion. Many people find it's less traumatic to just take charge of the situation, and when it starts falling out in clumps, get someone to cut it all off. There's been some previous discussion among the ladies here about the merits of a wig versus a stylish head covering, and I won't get into that, except to say that bald can be beautiful too!

Don't ever hesitate to ask a question or make a comment -- there are no nuisances on this site. Aloha,

Ned

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Hello Again, Susan,

On Bill's first regimen of carbo/taxol and concurrent radiation (7 weeks) he had little or no hair loss.

I even asked the oncologist if the treatment was at optimum level. He and the radiologist answered that it was. He had a 50 percent reduction in size of all cancer.

However, when Bill had WBR, for the lone metastasis (inoperable due to location in mid brain) he lost his hair. It grew back, but it grew back oddly. It came back on all sides, with one narrow blank space in the back, and no hair on top. This was not his pattern prior to the WBR. Bill had formerly had a full head of hair (but thinning on top).

He keeps getting it cut back to very close, and it looks quite nice. He grew a mustache which looks very "British." Since the barber doesn't need to cut so much on top, he can trim and shape that mustache. :lol:

As to chemo hair loss - I have known people who have had it grow back beautifully - and even curly when there had been no former waves or curls.

As they say, everyone is different, and that is why there are varied responses to chemo therapies and various regimens. We are all different in that respect.

As to making a nuisance? That could never be, dear Susan. We love hearing from the members, and very much want to be a part of helping in any way we can.

No question is ever ignored. There is always someone available to try to answer.

Blessings wished for you and your Mom,

Barbara

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Hi Susan -

Just wanted to give my opinion regarding hair loss which I did have....try and get your mom to go for a wig before the hair loss starts (if it does). This way she can try on different wigs, see what she likes, match it to her hair color, etc. before the trauma of losing the hair begins. I did that and just went in and had it styled when I finally did need it.

Hope everything goes well for your mother.

Bobbi

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Well, tomorrow is the day Mom starts her treatments. At this point she's doing better than I am. I am scared that we are just delaying the inevitable and only for selfish reasons. Hopefully I am wrong and somebody upstairs will help her through this. Thank you to everyone for your suggestions and honest answers to my questions..each one of you has answered questions not only honestly but compassionately....I only wish the best for each and everyone of you and your families. I will keep you posted on Mom's progress. Thanks for getting me through this week. Love, Susan

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Hi, Susan.

Sorry for belated response, but I've been offline due to out-of-state family visitors this last week.

I echo everyone's compliments to Ned re his articulate explanation of statistics, but also want to add yet another one:

In recent years, numerous research studies have shown that AGE HAS NO BEARING on cancer treatments. Instead, surviving chemo and radiation therapy is all about the general health of the patient; i.e., a 30 year old with other heatlh problems is far less likely to survive lung cancer than an 80 year old who is otherwise in good health.

My only other input is about Quality of Life. All research studies on this subject show that the higher the Quality of Life, the longer the Survival Rate. Thus, I encourage you and your Mom to get out there and have fun (to the extent she can) both during and after her treatments!

My best to you both.

Affectionately,

Carole

Life is not measured by the number of breaths we take, but by the moments that take our breath away.--the late, great George Carlin

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