lisaRN

hi elaine, yes, he has so much enegry.... he is up and around most of the day.... 4 weeks ago he slept most of the day and barely moved from his recliner.... the only complaint he has is the diarrhea which has been intermittent but when it does come it is horrible and debilitating..... he is taking Immodium but that doesnt help much....is there anything better out there to stop the diarhea? also we DID talk to his doc briefly.... he didnt say much other than continue on Iressa and come back on Oct. 4..... i think he is being careful not to get too excited just yet.... but anyway we will see what he has to say monday..... WITH EVERY DIFFICULTY ~ THERE IS RELIEF..............LISA

thanks everyone for all the WELL WISHES..... Ahmed did pretty well yesterday.... ( would have come on last night but my desktop monitor died and i had to get a new one today ).... the worst part as everyone had said was the attaching of the head frame....but no headaches or anything.... he had the gamma knife procedure....by the time they did the MRI they detected 2 more tumors, very small and close to the 1st one.... they were able to set up gamma knife to target all 3..... they were pushing for wbr though.... as a follow up, especially since Iressa is making a difference with the primary cancer.... we are also considering Temodar.... ahmed is concerned about the wbr b/c side effects.... we have lots of research and thinking to do.... any advice or experiences with these....please come forward ! WITH EVERY DIFFICULTY ~ THERE IS RELIEF............LISA

I got to thinking the other day..... I almost always think of myself as being an optimist.... After all, it is usually me that is telling everyone in the family not to worry because with God's help, everything will get better.... I always tell people "we have hope b/c there are still options" As those options started to wind down, I found myself more and more thinking about and preparing for the worst..... Not out loud, but the thoughts were swimming in my head...... last week, with the disappointment in TX I kept telling everyone, it's okay.... just b/c Ahmed doesn't meet the lung cancer vaccine trial (GVAX) criteria right now doesn’t mean there isn't hope b/c if any tumors DO pop up in the neck then we can just hop on a plane and go back to TX. In my heart, I think I knew even before we went to Texas that we wouldn't get good news..... Hey! Every single chemo regimen he has tried he has failed..... Dr. Coscia decided to start Iressa 4 weeks ago and although, I was telling the family things like "hopefully this one will work....I have a good feeling about this one....we still have hope", I sit here now and wonder if I had actually LOST HOPE.... I would have adamantly denied it a week ago....but looking back, I am forced to think about what I was doing last Thursday night, the night before we would go to the doc and get the CT results to see if 4 weeks of Iressa made any difference.... What WAS I doing that night???? I was already researching the next 2 drugs the doc was talking about changing to in case Iressa didn’t work... I always do this, so this action by itself doesn't send up NEON signs that say " AH HA...... Lisa, you've lost hope!" I still will say I don’t think I ever lost hope.... not in the prayerful sense.... I mean I always pray and ask GOD to give us a miracle..... The fact is I realized we DID need a miracle.....we DO need a miracle..... You get so used to hearing bad news that after awhile ( I don’t know, perhaps it is a defense mechanism )...... but you get so use to hearing the "bad stuff" that at some point you don't even expect that there will ever be ANY good news........ Well as I said in a previous post on Friday we went to the doc and he said they had seen some overall improvement in the chest....no specifics until the final report would come on Monday, he said...... Well that WAS good news.....we are still cautiously optimistic ......but that IS good news..... Now with the September 23rd report in hand...... I can see the specifics of the changes..... “….on the previous examination a mass that was measuring 5.21 x 4.04cm now measures approximately 2 x 2.5cm….” “….the peripheral lesion in the right upper lobe that previously measured 2.5 cm now measures 1.6cm…” “….an area of abnormality that measured 6.3cm now measures 5.37cm….” “….a previous 18mm nodule is now 8 mm and the previously identified 1 cm nodule is now approximately 5mm….” “….previously seen 3.98cm mass in right anterior pretracheal region is now 3.2cm….” “….overall size of the subcarinal and right azygoesophageal mass appears mildly decreased….. Measured 4.87 x 4.5cm and now measures 3.81 x 3.5cm….” “…previous study also demonstrated left hilar mass and adenopathy that has shown significant reduction where a previously seen 15mm left anterior infrahilar mass is now significantly reduced and measures about 8mm….” “…..a left adrenal nodule identified on the last study has reduced in size and is now barely detectable….. Also a right lobe liver lesion appears slightly smaller and less conspicuous than the last exam…..” I can hardly believe my eyes as I read this report…. IRESSA SEEMS TO BE WORKING ..... go figure.......I know it’s still early on and anything can happen, but isn’t amazing how HOPE can be rejuvenated? Just when you think you’re coming to the end of the road…. LOOK WHAT GOD CAN DO….. So........I looked up the word HOPE in the dictionary…. Here is what I found…. 1 : to cherish a desire with anticipation 2 : to desire with expectation of obtainment 3 : to expect with confidence What I realized is that HOPE IS what I have and that it is actually my lack of confidence or my low expectations that overshadow my HOPE. HOPE is as much a gift and a mercy from GOD as good health is….. HOPE is what keeps us going from day to day……… HOPE is NEVER LOST…. I might misplace or displace it once in awhile, but HOPE is ALWAYS there…… WITH EVERY DIFFICULTY ~ THERE IS RELIEF.................LISA

PS Elaine, What are you writing the article for?.... i just saw your profile....didnt know you were a journalist..... very cool..... i am 17 credits away from my bachelors in journalism..... took lots of writing classes at the associate level ..... just in case i didnt make it thru nursing school ...just kidding ~ writing is a passion for me .... actually i havent decided what i will finish my bachelor's in.... it will prob be nursing.... i want to eventually get my MS in nursing, maybe practitioner..... not sure yet.... i wrote many articles for the college newspaper, the last of which was Nov 2002.... ironically it was all about lung cancer awareness month..... if only i knew what i was headed for..... i have also written several children's books (many years ago when i had time on my hands and a little guy to entertain .....but, he's not little any more ) Anyway.... if you would like to PM me, please feel free.... perhaps we can unite our talents and work on a project together sometime...... OOOOOPS...........JUST FOUND YOUR POST RE: WHAT YOU ARE WRITING ABOUT.... SORRY WITH EVERY DIFFICULTY ~ THERE IS RELIEF.....................LISA

3 trips to the family dr for us ...... then when he still didnt get better he went to the immediate care walk in center next to his job.....that was a waste of time too all he ever go was a new cough syrup and a new anti biotic ..... that's why i decided to head out of town and took him up to YALE..... he had enough robutussin with codeine ..... WITH EVERY DIFFICULTY ~ THERE IS RELIEF.....................LISA

Hi Elaine, Answered yes for my husband.... that's what finally got him into the ER with a collapsed lung..... if not for the coughing, I wonder if we would have been DX yet!!!! WITH EVERY DIFFICULTY ~ THERE IS RELIEF.....................LISA

we finally go a call today from the Gamma Knife Center at Yale, we are on their schedule for tommorrow for Gamma Knife.... i spoke with the nurse and she reassured me that my husband would only get the Gamma Knife and that we would not be pressured to go into the study where 50% get WBR..... we have been going a little crazy trying to figure out how to treat the brain met when at first yale had refused to perform the gamma knife unless we were enrolled in the study.... i know they will do another MRI just before the treatment in order to map the treatment.... i just pray they dont find any new mets.... afterall it was Sept 9 when he had his last brain MRI.... they wasted so much time....grrrr....(brrrrrr......grrrrrr...... said the cold hungry bear) anyway, tommorrow is the day....my husband is anxious worrying about the frame they will attach..... anyone with experience....any advice or helpful hints? please tell me how you did with this procedure..... thanks in advance WITH EVERY DIFFICULTY ~ THERE IS RELIEF..................LISA

Hello, Here is a link for the catalog Mary Ann mentioned http://www.tlccatalog.org/ WITH EVERY DIFFICULTY ~ THERE IS RELIEF..................LISA

Dear ejpritz, This is a tough time, I go through it every time we get a scan too.... and you're right, it does feel like you are going through the diagnosis phase all over again.... Although your mom may not be able to have surgery or radiation again.... there ARE MANY other options..... please, take it from me..... i have been flying all over the country every time I hear about another one.... There are still various chemo agents and of course Iressa..... there are so many trials re: new drugs, old drugs used in new combinations, etc.... You might want to hang out here and keep an eye on what others are doing..... Try not to worry until they tell you to worry..... (easier said than done) PLEASE keep us updated.... as soon as you know the results.... Best Wishes and Many Prayers to you and your mom.. WITH EVERY DIFFICULTY ~ THERE IS RELIEF..................LISA

This tune just popped into my head..... You take the good... you take the bad... you take them both and there you have the facts of life, the facts of life. When the world doesn't seem....to be livin' up to your dreams... and suddenly your'e findin' out... the facts of life are all about...you! Melanie, You're right....we are here for supporting each other.....please don't get discouraged.... i am so glad i found this group and glad you did too..... WITH EVERY DIFFICULTY ~ THERE IS RELIEF........................LISA

Dear Dean, Perhaps we can all learn a thing or two from you..... your attitude is inspiring..... many thoughts and prayers coming your way..... WITH EVERY DIFFICULTY ~ THERE IS RELIEF ..................LISA

Fay, Your contribution to this group is evident in all of the previous posts..... Obviously you are greatly treasured here.... stay focused and stay positive.... I am sure everyone will agree, we look forward to your next 1600 posts!!! WITH EVERY DIFFICULTY ~ THERE IS RELIEF............LISA

Hi Bill, We actually went to Dana Farber a couple of times for second opinions and they gave us some literature of clinical trial results including some trials conducted by Japanese scientists..... Dana Farber in conjunction with Mass General have done groundbreaking research to isolate a genetic mutation which could explain why Iressa works better in some than in others and are now working on developing a test so that local oncologists could test their patients before giving the drug.... I will try to scan the documents I have into the computer later tonight.... and I will try to either post them or email them ..... (we will see how smooth my technical skills are with regards to the scan....more than likely I will need to recruit a teenager....good thing I have one ) The following though, are a couple of news links that elude to my comment as well.... hope this helps....let me know http://www.fresno.networkofcare.org/aging/news/detail.cfm?articleID=5017 http://uttm.com/stories/2004/04/29/health/main614815.shtml http://www.ipphila.com/index.cfm/fuseaction/news.detail/articleSectionID/2/articleSectionTitle/IP%20News/articleID/418/HCSID/13 WITH EVERY DIFFICULTY ~ THERE IS RELIEF...............LISA

~~~~~HAPPY ANNIVERSARY~~~~~ WITH EVERY DIFFICULTY ~ THERE IS RELIEF..................LISA

Dear Charolette, I am deeply sorry for your loss.... i have followed your posts since my short time here and your are an amazing person .... i am glad to see that you have a lot of family support.... my prayers are with you.... look forward to seeing more posts from you re: your brother etc... Lisa

WOW! What a week.... Monday we saw our oncologist , who had been on vacation for the last 2 weeks (which seemed like an eternity). My husband was not doing too well on Monday, had pains in both legs, not sleeping at night, increased sputum production with a fair amount of blood and still some odor to it.... The doc looked concerned when my husband told him that the sputum seemed to resemble the taste of his previous meals....a fact which he had not revealed to me until we were in front of the doc.... So anyway he ordered a CT SCAN for Thursday so he could determine 2 things....1) Is the Iressa working? ( he's been on Iressa for 4 weeks) and 2) Could there be a tracheal/esophogeal fistula? (is there a hole between the trachea and esophogus?) Needless to say Monday was not one of our best days.... Tuesday...... we flew to Dallas, TX to meet with Dr. Nemunaitis re: GVAX, a clinical vaccine trial that is going on at Mary Crowley Medical Research Center. We had a tough flight. There were 2 little kids behind us jumping on the seats, hitting my husband in the head, pulling my hair, taking my husbands pillow from under his head.... they were disturbing everyone around them, not just us.... the worse part was that the mother was not appologetic for their behavior and made no attempt to keep them busy or even in their seats....the flight attendant had to return one of the kids several times to their mother when the kid was wandering down the aisle toward the front of the plane without supervision, even when the seatbelt sign was on.....when the flight attendant suggested the mother strap them in, she got angry and said that they would have more room in their own seats if my husband and the guy sitting next to him would "keep their seats in the full upright position.... (I am not kidding)...Anyway Tuesday was FUN .... it's a funny story to tell at least Wednesday we met with Dr. Nemunaitis..... the nicest guy you ever met... we were a little disapointed b/c you have to meet strict criteria to get into the GVAX trial.... you need to have tumor or an affected lymph node that is easy to remove and can be taken without general anesthesia.... it's one of those things where you dont wish you had aother tumor, but if you have to have any, why cant they at least be in easy to access locations.... well of course we all know tumors do not work that way and they certainly seem to have a mind of their own.... (you can also use the fluid from a pleural effusion to make the vaccine.... of course we dont have that either..... and even if you do have one, they need 600cc of fluid) Dr Nemunaitis did speak of another trial that is coming in a couple of months though....where you dont have to take the tumor from the patient....the vaccine is instead manufactured 100% in the lab.... Anyway we flew back home on Wednesday evening.... no kids behind us... but not at all impressed with the airline.... My favorite is Delta Song...they have sattelite tv's in the back of every seat and you can play trivia games on them or rent pay per view movies.... Thursday.... Had Ct Scan done.... Friday ... returned to oncologist at home..... I expected that he would say the Iressa wasnt working....after all nothing else has worked until now.... why should Iressa? the docs have said Iressa usually works best in Japanese women non smokers with adenocarcinoma and even then, it only works in about 10% of them.... Well my husband is NOT A WOMAN , and no he is NOT JAPANESE , HE does NOT have ADENOCARCINOMA (he has squamous cell) ..... the only thing he had going for him in this scenario was being a never smoker according to the docs.... but our onc said, Iressa is just one of those things.... you never know.... Well at our appt Friday, prepared to hear about progression, our onc said that the final reports from the CT wont be back until monday but...... it showed OVERALL IMPROVEMENT in the chest..... !!!!!! ?????? !!!!!!! Now at this point, we PROCEED WITH CAUTION....after all I remember way back in the beginning of May after only 2 weeks of radiation and one dose of Carbo/Mitomycin/Navelbine that the docs at yale said the tumor had shrunk 30%.... by the next CT SCAN we not only had progression but bone mets..... So.....I am being cautiously optimistic ....I mean we didnt think this would help at all given the odds and we were praying for stabilization.... improvement is more than we could ask for.... I am extremely anxious to see the report on monday.... also no mention yet as to whether or not they see a fistula.... His onc made a comment on Friday that my husband confuses him because he had just seen him on Monday and he looked "lousy" and yet on Friday he looked "great"... I told him he changes from one day to the next.... we never know what tommorrow brings.... speaking of tommorrow.... we will see what the CT report brings... WITH EVERY DIFFICULTY ~ THERE IS RELIEF...............LISA

Dear Bill From my experience the normal range of alkaline phosphatase is 30-120 U/L in an adult.... my reference shows no difference between male and female reference ranges.. The maximum dosage for Zometa is 4mg given by IV infusion over no less than 15 minutes. 4 mg seems to be the standard dosing information. Drugs that may cause elevated ALP levels include albumin made from placental tissue, allopurinol, antibiotics, azathioprine, colchicine, fluorides, indomethacin, isoniazid (INH), methotrexate, methyldopa, nicotinic acid, phenothiazine, probenecid, tetracyclines, and verapamil. Other things that can cause increased levels are cirrhosis, primary or metastatic liver tumor, biliary obstruction, metastatic tumor to the bone, healing fracture, hyperparathyroidism, sarcoidosis, and rheumatoid arthritis. Does your wife have liver mets? I am assuming she has bone mets if she is taking the Zometa. Perhaps the bone mets are the cause for the increase. My husband has mets to bone, liver, adrenal gland and brain....he is on Zometa (got 2nd dose yesterday).... I will let you know what his levels are when i get them on monday.... so far we dont think he is having any side effects from Zometa itself....but sometimes there is so much going on with symptoms it is difficult to sort it all out... Prayers for you and your wife.... WITH EVERY DIFFICULTY ~ THERE IS RELIEF................LISA

I have been away for a few days and when I returned I found myself surprised at some of the posts I was reading re: ANGER. Without getting specific (I have no desire to go there) I do have some thoughts on ANGER. It surprises me to see how many people are easily offended by other's "ANGRY" tones. I think that it is important for us all to remember that we each are dealing with this horrible situation, that unfortunately we all have in common, in our own individual ways. And while yes it's true that life is about give and take, it also helps us to remember that sometimes we are so consumed with our own anger that it is not easy for us to "give back" at that time (sometimes we don't have anything left to give) .... after all there is no definitive timeline that tells us that we must be over our anger and learn to acccept in such and such timeframe..... there can't be....we are all DIFFERENT. Thank GOD most of my days I am able to stay focused on the positive.... keep myself together for my son's and my husband's sake as well as for my own sanity... Although I consider myself to be an optimist and try to encourage everyone around me to stay positive also, I too HAVE experienced some of the stages of grief.... I would challange anyone who says they have not experienced these stages as well. I for one, reserve the right to be angry. I HATE CANCER. I HATE what it is doing to my family and to the other families I see suffering from it's wrath. I HATE having to wake up every day to the REALITY that this isn't a dream.... I HATE having to hear my son asking me ( through streaming tears) if his father is dying and WHY hasn't anyone found a cure for this disease.... I HATE having to translate all the "bad news" in the reports to my husband and son because the docs held back and simply handed us a copy. I HATE it when we walk into the doctor's office and the nurse asks "How's he doing?" and then I tell her not well and list all of his symptoms of the day and she nonchalantly says.... "Oh, that's normal" NORMAL???? There is nothing normal about this disease or the situation we are in.... I HATE it when everyone tells me when to cry or not to cry and how I should try not to worry..... I FEEL WHAT I FEEL WHEN I FEEL IT AND I THINK I HAVE A RIGHT TO WORRY.... AM I ANGRY????? ..... YOU BET I AM!!!! I dont think about my anger every single second....maybe not even every single day... but it is there...and it is NORMAL..... and it is a RIGHT that I wish I hadn't earned... I know everyone has good intentions.... but the whole point here is to SUPPORT..... I think patients/caregivers coming to support boards like this come here to VENT their ANGER....let out their frustrations..... I think that the expectation is that if you speak openly about your feelings that you will not be JUDGED in a SUPPORT community but instead will be SUPPORTED.... even if your way of dealing with this is different from everyone else... I think that when patients/caregivers take the time to post messages and replies on a SUPPORT board that they are looking for others to UNDERSTAND AND SUPPORT them by saying " I HEAR YOU" "I MAY NOT AGREE WITH YOU, BUT I HEAR YOU" That being said.... is there anything ABNORMAL about being ANGRY???? NO! NO! NO! Grief is a process of physical, emotional, social and cognitive reactions to a real or perceived loss. It is usually experienced by both patient and caregiver. Although individual responses to illness/loss are as diverse as the people experiencing them, the grieving process has significant common stages. What is most important is that we all understand that ALL of these EMOTIONS are NORMAL and EXPECTED. One needs to be patient with themselves or others experiencing a terminal illness or loss. As a nurse, I have learned that people often go through stages or phases of grief. Some stages of grief reactions are described below, they were taken from a project given to me in nursing school and are not my own words. Although, I am unsure of the author of this specific excerpt, I believe it is based on Elisabeth Kubler Ross's book On Death and Dying. I hope it is helpful to patients and caregivers alike.... The Five Stages of Grieving 1. Denial, shock and Isolation: The first reaction to learning of terminal illness or death of a loved one is to deny the reality of the situation. It is a normal reaction to rationalize overwhelming emotions. It is a defense mechanism that buffers the immediate shock. We block out the words and hide from the facts. This is a temporary response that carries us through the first wave of pain. The reality of terminal illness/death has not yet been accepted by the bereaved. He or she feels stunned and bewildered as if everything is "unreal." 2. Anger: As the masking effects of denial and isolation begin to fade, reality and its pain re-emerge. We are not ready. The intense emotion is deflected from our vulnerable core, redirected and expressed instead as anger. The anger may be aimed at inanimate objects, complete strangers, friends or family. Anger may be directed at our dying or deceased relative/friend. Rationally, we know the individual is not to be blamed. Emotionally, however, we may resent them for causing us pain or for leaving us. We feel guilty for being angry, and this makes us more angry. The grief stricken person often lashes out at family, friends, themselves, God, the doctors or the world in general. Health professionals deal with death and dying every day. That does not make them immune to the suffering of their patients or to those who grieve for them. 3. Bargaining: The normal reaction to feelings of helplessness and vulnerability is often a need to regain control. If only we had sought medical attention sooner. If we got a second opinion from another doctor. If I changed my diet, maybe I will get well. In this stage, the bereaved asks for a deal or reward from either God, the doctor or the Clergy. Comments like "I'll go to Church every day, if only my loved one will come back to me" are common. This is a weaker line of defense to protect us from the painful reality. 4. Depression: Depression occurs as a reaction to the changed way of life created by the loss. The bereaved person feels intensely sad, hopeless, drained and helpless. 5.Acceptance: Reaching this stage of mourning is a gift not afforded to everyone. Acceptance comes when the changes brought upon the person by the loss are stabilized into a new lifestyle. Death may be sudden and unexpected or we may never see beyond our anger or denial. It is not necessarily a mark of bravery to resist the inevitable and to deny ourselves the opportunity to make our peace. This phase is marked by withdrawal and calm. This is not a period of happiness and must be distinguished from depression. PRAYERS FOR ALL WITH EVERY DIFFICULTY ~ THERE IS RELIEF..................LISA

dr joe, i just read your bio.... boy i wish we had a program such as yours at the time of dx....good for you for implementing that... our dx was very disjointed what a difference the team approach makes....many facilities claim they offer the team but unfortunately, as you say, having several members to make up the team doesnt guarantee they will communicate effectively.... i have to say that most of our visits to other major cancer centers more closely reflect what you are doing in MN.... again welcome.... Lisa

Something to hope for..... got phone call from mary crowley medical research center in Texas today regarding the lung cancer vaccine trial..... they recieved and reviewed my husband's medical records and we are definately all set to go out on Wednesday 9/22 for our consultation..... that's one obstacle behind us..... i am just praying they take him.... we don't have a lot of chemo options left.... however we still dont know if the Iressa is working.... he is still coughing up blood etc... but he HAS been feeling better and has had more energy over the last couple of days..... saying prayers for a safe and successful trip to Dallas. Lisa

dear minpin, i am so sorry to hear about your mom....my prayers are with you in such a difficult time.... i can relate to you when you say "...my mom....my best friend..." my mom is only 55 and I 36.... around the same age as you and your mom.... but in my case it is my husband ( my other best friend) who has the cancer.... the issue of prognosis always seems to lurk around us although we have NEVER invited it..... it crossed my mind in the beginning to ask the docs.... but i was always afraid.... i guess i didnt want any answers.... i figure only God truly knows the "WHEN" question....and for now i will be grateful for ANY time we have.... of course, sometimes when i am researching the disease, new meds, new symptoms, etc... i trip accross some statistics... at first they really bothered me, seeing the #'s i mean.... but although i am sure they are based on scientific data, i remind myself that individually #'s dont fit neatly into our scenario.... as far as the internet goes there is a ton of info out there re: statistics and prognosis if you are ready for that and are actively seeking the info...just be careful to visit legitimate sites for correct info.... the National Cancer Institute site is often helpful to me: http://www.nci.nih.gov/ the statistics for my husband dont look good at all.... but for me personally i am trying to stay positive and focus on the "here and now".... after all we never know.... there could be major break-throughs in lungcancer tommorrow.... i have to hold to my belief in miracles and that "it's not over 'till it's over" Regarding your question of online support groups, i am only using this one right now.... this is really a good forum for support.... i dont know of any others off hand but you might find some if you go to the: American Cancer Society: http://www.cancer.org/docroot/home/index.asp American Lung Associtation: http://www.lungusa.org/site/pp.asp?c=dvLUK9O0E&b=22542 or ALCASE websites: http://alcase.org/ I hope this helps.... please feel free to pm me if you just need to vent or something.... i can even send you my email address... I am sure others will post here soon and will probably be able to offer you more resources as well.... Many prayers and warm wishes... Lisa

dear beth, glad to know that your are in the right place now and getting treatment.... hope you are feeling better, hang in there and get home soon.... i am sure you are tremendously missed here.... best wishes and a million prayers for a speedy recovery.... Lisa

very nice.... it says so much about spirit and determination... Lisa

hi christy, congratulations on your wedding.... prayers for you and Darrell for another clean CT scan on Oct 4th.... please keep us updated as you can.... many prayers Lisa