Questions: Husband & Stage 3B Squamous treatment

[snappy]

My husband is the one with the cancer. He doesn't do the computer. I did just post a short message in Introduction Section.

Depending on how effective the chemo/radiation is, oncologists said surgery 'might' be an option. From lurking around here, I think you all know that better than we do. This is all very new to us. We have no prior Cancer experience.

I am wondering how this is all confirmed for sure. This is a very rare pulmonary infection he has and cancer also. People make mistakes. How much confidence do we all have in these biopsy's or tests that determine the outcomes?

He is not feeling good about where he thinks the cancer is. The Pulmonary Dr told him to keep the heart appointments in that the surgeon/onogolists, whichever, would require them to treat or operate.

The stress this all created. Ohhh! Neither of us know about this stuff. We were upset. The waiting is awful.

We were really in the overwhelmed spot all last week. This week has lessened. Although we are both getting concerned about the possible serious effects from the treatments. We attend the Chemo class tomorrow and maybe it will sound better than how the papers read.

My husband is somewhat anxious about any nausea from the Chemo. He doesn't take medicine well. He was nausea for about 24 hours after the port and think he doesn’t react well to anesthetic.

I have no concept when cancer starts moving, whether that becomes slow or fast. It is a slow moving cancer but doctor already said with this kind, it has probably been there year already. If you don't want something to get 'over the fence', how do you know today if it is ready to go over or still back a ways from the fence. It was identified on 1/17/08 and so quite a delay in getting started.

What is the difference in the 3 kinds of lung cancer NSCLC. It looks like the one starting with 'A" is more common. What is difference, at least, between that and this Squamous? What is BAC? It didn't matter I thought but then started seeing it a lot while reading and figure I can relate better if I know what is being discussed. I have already learned a lot. This is all new terms to me.

I picked up a post with some acronyms but would help if there is a link with more of the cancer ones. Thanks,

Can any of the results to come yet change what is scheduled already?

Even with the overwhelming week, we have handled this fairly well. I know I feel a lot more anxiety starting since the treatments are so near. My husband also seems to feel that way. Real concerns over all the things that can happen from the treatments. If there is anything you can offer to help ease the concerns I appreciate it. BTW, I don't like to do Chats.

My husband also wanted me to see if I could find out what it is you are suppose to eat or not eat. He has some papers on it but we always get so confused on these. We were never big on special diets. Maybe you will just direct me to the nutrition section. I see there is one. Wasn't top of my list yet.

I will try to shorten my future posts but the questions have been building and just cannot find time to do all this. Thanks,

[recce101]

Hi again, Mary:

The LCSC excels in sharing first-hand information concerning symptoms, drug side effects, and other lung cancer issues from the perspective of a patient or family member. No matter what the condition or treatment, we are sure to have members who have "been there, done that" and are ready to help you along this new journey. But for detailed medical information, I highly recommend that you visit onctalk.com. There's a wealth of information there, primarily on lung cancer, constantly updated by a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions from people like you and me. A lot of us have "dual citizenship" so to speak, and have the same usernames there as here.

Now let's go down your list:

Biopsies/tests. Generally speaking, a tissue sample (biopsy) is required before treatment is begun, not only to confirm the existence of cancer, but also to determine the specific cell type, as the treatment may vary with the type. But once treatment has begun, response to treatment is measured by scans, usually CT and/or PET. You should ask for copies of the pathology reports (for biopsies) and radiology reports (for scans). Even though you won't understand all of the terminology, you'll be able to determine how sure the pathologist or radiologist is of the findings. Scan results are frequently ambiguous, and that's reflected in the report. Pathology reports can be "inconclusive," especially if exactly the right spot was not sampled, but if a report definitely identifies a specific cancer cell type, I'd be inclined to believe it.

Chemo and nausea. I've had nausea from anesthesia (before cancer became part of my life), but I've never had the slightest tendency toward nausea with any of my chemo infusions. Anti-nausea medication is routinely given at the beginning of chemo sessions, and your husband may also be prescribed something to take at home. He should take it on schedule, not wait until he feels sick.

NSCLC types. OncTalk is the best source for the specifics on adenocarcinoma (which includes BAC and I won't try to spell what that stands for), squamous cell carcinoma, and large cell carcinoma.

Nutrition. You'll get all sorts of opinions on this one. Many oncologists discourage taking special supplements, since some of them are thought to interfere with the action of certain chemos, and they recommend at most just a standard multi-vitamin along with a good diet. If you husband is having trouble maintaining weight due to taste, swallowing, or digestive problems while on treatment, most people would tell you that maintaining weight is more important than a balanced diet for that period of time. Ensure or one of its clones, or Carnation Instant Breakfast powder mixed in dairy or soy milk, can be very useful.

You'll probably get some more suggestions when our mainlanders wake up in the morning. Aloha,

Ned

[Patti B]

Mary -

Sorry you and your husband find the need to be here but this is a great place to be to help you along your journey. The beginning can be so overwhelming and scary - once you know for sure your husbands treatment plan and everything that goes along with it, you will begin to settle in.

I see Ned has already given you a wealth of information and I would like to reiterate what he said about the anti-nauseau drugs. If the first one doesn't work, go for another one. In 22 chemos, I only had one episode of nausea, and that is when a new doc changed my pre-med. So, you see, not everyone gets sick with chemo!!

Finally, no need to apologize about the long post. Keep em coming if thats what helps you. We are all here for you and your husband.

Please keep us posted.

Hugs - Patti B.

[Kasey]

Welcome, Snappy. I read your posts late last night, but was ready for bed. I knew I needed a bit of time to address all your concerns, so I'm back this morning.

You and your husband find yourselves in exactly the same place most of us did when starting out on the LC journey. Be patient, pay attention, and keep researching and you'll find yourself learning most of what you'll need to know.

You mentioned the 'wait'.......well, that is something we ALL deal with. I'd say get used to it, but I never have. I wouldn't be overly concerned with how long it's been so far, seems that it is happening within a resonable time frame. This is part of the routine......wait and then wait some more!

Surgery "may" be an option at some point in the future???? That would be a VERY good thing. I'd like to point out, however, that IF surgery is to be done, then there is only so much radiation your hubby could have. In my case, I couldn't have more than 22 sessions. Too much radiation causes too much scarring and the inability to heal properly from surgery. So IF that is to be considered, keep this in mind.

I'm not so sure it's that important at this time to truly understand all the different types of LC you mentioned. I'm thinking your hubby has Adenocarcinoma. But the chemos are pretyy much the same for whatever type NSCLC he has. Once you know for sure, you can read up. BAC is a 'special' category and is a very slow growing type. I couldn't really explain all the differences to you.

There is an LCSC Dictionary in the General Forum. It is in the beginning and is a 'Sticky'. There you will find SOME of the acronyms. You will learn as you go along. Just ask us here. There is also a Cancer Dictionary. It is located in 2 different place on the board. On the Home Page on the righthand side and on the left under LC info look for the Glossary.

This is really getting way too long for now, Snappy. Let me just conclude by mentioning that MANY of us here have gotten more than one opinion, and we (I) highly recommend it. If you read Kasey's Story in the My Story Forum, you will see that I actually got 4 of them. My personal philosophy is that it is dangerous to put all your eggs in the first basket offered until you know it is the BEST one! And ALWAYS get copies of everything for yourselves. That makes it MUCH easier if you do decide to get another opinion. It saves lots of running about to get everything together ~ and is just a good thing that you have all your stuff for yourselves.

I could go on and on, but I've probably already overwhelmed you. You just keep coming here with your questions and concerns. We're here to walk you through it.

Kasey

[snappy]

Thank you all very much for your input. I really appreciate the time you took. I guess I have most my questions answered currently.

We went to the Chemo Class today and that answered more questions. My husband still has to get a clearance from the heart doctor in AM before start Chemo. I sure hope that happens now. I think it should. He also has to question if he could go off the aspirn for while. Since the Stent was put in he takes Plavix and Aspirn. Anyone else have any similar experience.

Kasey, I didn't know that about the radiation and surgery. Guess we didn't get that far. However, the Ocology Dr is the one that said won't rule surgery out depending if they get to the lymph nodes.

If the expected treatment plan is for 6 weeks, do they do testing before that ends sometimes to see what is going on. Six weeks of radiation would be 30 treatments.

Excuse some of my wording as by day's end I am getting tired more than usual and also not really learned all the terminology.

I am sure I will be asking more questions. Thanks again.

[snappy]

"snappy"] Can any of the results to come yet change what is scheduled already?

Wellll!!!, if I had just waited I could have answered my above question. What a difference a day can make.

I am still trying to get comfortable on this message board. Wasn't sure about a new topic for tonite or using this same thread. I am generally fairly upbeat but use sarcasm at times to cope. That is what my above paragraph is.

We went to the Chemo Class yesterday. It went good but info that can sound scary. We were set to go on Monday. Last week was really overwhelming. We were getting a handle on this. Yesterday had its moments. I think we both got to accepting where we were headed, just some anxiety.

Then today at the Heart Dr. has changed everything. I have marked in my profile, the changes in 'Green'.

All the phone calls and re-scheduling and questioning got the stress level up today. I didn't help matters for a while myself. I was mad and frustrated and very concerned all at the same time. Then I realized I wasn't helping matters.

Due to the angiogram on Monday, there can be no cancer treatments until 25th. The timing is just really bothering me. My big concern is what is the cancer doing while we are doing all of this

I suppose there is no choice and we just have to wait Cardiac doctors here are very hard to find where they communicate well with you. This was our 3rd one. They should do the angiogram well and if a stent was needed, they will do it right then. They did the one put in in 2006. However, if we start anything new on the heart, I prefer a new doctor or a new place. This office lacks the communication in situations where time is so important.

I don't know the experience of all of you but we have found that the 'front office' of many doctors is really poor. The doctors can be good but the front office is not like it was years ago. We have no idea with the ocology office we are at as this is new but doing fine so far there. That is good.

The biggest thing that is nagging me with this new setback (the spouse) is if the cancer is progressing while we keep putting off treatment He is already at a low level.

I am still limited to time right now, but, I will read more about the caregivers yet. I know I have read a few things. I know many thoughts can go thru the patients head. My husband & I are close and trying to share but he has got to have feelings that he does not share.

I guess I will ask you if he is also 'more' stressed by this Dumb question but maybe I am asking you, where is it that he could be at with his thoughts now. He admitted that he did consider stopping it all He is really not going to do that at this point tho.

I am always trying to protect him and he is always trying to protect me. I am sure none of this is new to many of you but I sam explaining so you know where I am coming from with my questions. Thanks again.

[recce101]

Hi, Mary:

You two have certainly had a string of difficult and frustrating days, and I know you're concerned that the chemo/radiation treatments are being delayed another week, this time because of the angiogram and possible stent placement on the 18th. I had similar concerns myself -- had to wait a month to recover from exploratory surgery before I could start chemo -- and I think a good percentage of our members have had the same kind of worry, that they finally had a diagnosis but then had to wait for one thing or another before they could start treatment.

But in your husband's case, the extra week of waiting may be to his advantage if the cardio team can find and correct the cause of his shortness of breath. Improved energy and stamina will help him tolerate the treatments and at the same time strengthen his own natural defenses against cancer.

I hope you can both relax and maybe even do some fun stuff this weekend! Aloha,

Ned