sallys

I saw my onocologist yesterday. I told him no more Alimta. He is a little in denial that Alimta can cause all these side effects but he did agree that maybe my body could use a rest from treatment. So I have 6 weeks off. But he does not want me to do any of my herbal alternatives which I don’t like. But I will do what he says. Anyway I am feeling much better the longer I go without all. I ask him if my tumor was fast growing or if it could spread if I go without treatment. He doesn't have an answer, dumb question duhhh! The upper GI was done and my BP was so low, they couldn’t keep it up to 90, so it took all day. Then they decided to do a lower GI and found that I have a very slow bowel movement and thus the full feeling because things are just not going on down. Now I have a new med Metopropram and it is working wonders. No more constipation and the food moves on down, still have to watch all I eat but eating more; nausea is better tho still some in the mornings, no vomiting. So I am feeling much better, beginning to regain strength and doing the washing and folding clothes again, polished some furniture, now if it would just warm up so I can get back to my walking and really rebuild my strength back up. My next pet scan will be in March. Doc said that if Alimta blasted my body so badly then just maybe it did the same to the tumor…wouldn’t that be great news!!! It feels so good not to feel so sick, like a miracle! I have never seen anything on Connie B’s surgery….Is she okay? Hugs and prayers for you all…..Sally

Thanks Muriel and Kasey. I did contact my onc and Curt talked to the nurse. They were supposed to get back to us but never did. Guess he is blaming everything on the slow bowel. Seems like my docs are all pushing the blame off on to something else. My internist didn't want to see me said I needed to see my onc, Dr. Scott supposedly sent my reports to my onc and he was supposed to contact me but???? I thought I had the best of the best here but now am having my doubts. I tried to find the stand4hope site and did but didn't find anything listed on it esp. any dates. So I must be doing something wrong there. Any suggestions? I am trying to stand strong here but my hubby is scared and so am I. He is a great support to me and is worried sick.

Right now I am scared and not sure what to do??? My last Alimta chemo treatment went very bad. Each day after I kept getting sicker and sicker, couldn’t get out of bed, my neuropathy excellerated in my feet and legs until they have been so painful. I saw my pain doc and her first words were…”my God you look awful, what happened?” I didn’t know that I looked that bad but my husband said I did. I could hardly walk, my BP was way down 60/40 and I had lost more weight, running the low temp again l00.3 to 101.2, sweats, waking up in wet pajamas every morning. Scheduled an endoscopy upper and the doc couldn’t do until he got my BP up.It was scheduled for 10 a..m. and didn’t get completed until 3 p.m. when it should have been over and done in 20 min. But the BP being so low he said I could die on the table while he was doing the scope. Because of the low BP Dr. Scott also proceded with a lower endoscopy….this all was being done because of the vomiting and nausea I was having daily. I do not have any obstruction or blockage which is great, great!!!! news. But I do have a very slow bowel moving problem which the food does not move on down and thus the full feeling all the time and the nausea (said this could be caused from the surgery over a year ago???). I am now on a medication metroproclan, which I take 30 min. before each meal. This helps considerably…at least I am not vomiting, still some nausea and fullness but in time hope this clears up completely. I do however feel the Alimta has caused 99% of my problems, weakness, tiredness (low BP), and worsened neuropathy. I fear another treatment with this drug and there just might not be any more Sally! So I plan to tell my doctor tomorrow that I don’t want another treatment with this because of my fears and hear what he has to say. Perhaps another rest from chemo is what I need as I am still not in good shape. Thus no updates on my history for all. Though I have it together I have no one to put it on line for me but I will get there when I get to feeling better. Has anyone else gone through all of this with Alimta? I know some have had good results with it and others perhaps not. It still is hard to walk but my BP is returning back to its normal high so am back on my BP medication. My mind is also very confused. I am also having to give serious thought to a port as my veins are just not cooperating anymore for blood tests or any other test that calls for the needle. It took them a good hour of jabbing and digging the last treatment. My hemoglobin is low, rbc low, white a little high. Have been given an injection last time for the low hemoglobin. All in all I feel downright sick. It is scary as to what one should do here, esp. since my cancer is growing again. I know you can’t advise me what to do but can you let me know if you have had Alimta and if anyone has ever suffered like this with it?

Preview Posted: Mon Dec 17, 2007 8:36 am Post subject: Thank you all for your support and responses, they have really been an encouragement to me and a help. I have not seen a gastroenterologist as the chemo started first, so if things do not change then I will have to see one after chemo is complete. My lung spec. doc told me for my severe constipation to take mineral oil, 1 oz. q 4 to 6 hrs. Hey!!! it worked!!! so am doing much better with this at least the last couple days. AND my sweet hubby and my son got the CHRITMAS TREE put up Saturday and it is beautiful with all the memorable decorations. Love it!!! So now I am beginning to feel more like the Spirit is arriving in this homestead. And the neighbor is bringing over some home baked sugar cookies next week! Your prayers are being heard and things are looking up...I have also had 2 really good days and on one of them I actualy got my Christmas cards addressed and Curt mailed them for me. These are such big accomplishments to me and I feel like a whole new person. Next week I will be having another treatment of Alimta so I want to get all done this week and the treatment will be after Christmas, the 27th...dread that but blessed it is after Christmas. Once again thank you all so much for your caring hearts you are what we all need with each other! Though our trials seem hard our blessings always far outweigh our trials. God bless you each and everyone! with love, hugs and prayers for all...Sally p.s. I sent this email somewhere but I don't know where it went so am resending it. Also I am working on my updates with my profile, found some papers that will help just have to sort everything out and get it ready. _________________Dx'd w/NSCLC in Oct. 06 Biopsy Oct. 06 SCLC Squamous mallignancy Total lobectomy Sept. 7, 06 Recurrance..Feb.7, 07 (7.8cm mass upper lt. lobe same lung that had surgery; aso mass in lower rt. lung dx'd at this time.

Geezzz Connie, your surgical date is awful close here. I have been storming heaven with prayers towards it and for it and will continue with them all the way through and after. You hang in there and know that you are going to be okay, you have the greatest physician of all there with you guiding the doctors hands and decisions during this tramatic surgery and we will all be on our knees for you. And if you want birthday hats I'll transform one of my many hats! You take care Connie, I worry bout you and love you and my prayers are ever with you and God's presence right there beside you. And Maurie my prayers are with you too, hope your back is somewhat better. God bless you both eversomuch with strength, faith and trust in Him through all you are going through! love, hugs and prayers....Sally

Thank you all for your comments….I know I have not updated my profile, I don’t have all the info that you do. I need to see a gastroenterologist to see if I have a blockage in my stomach from surgery keeping me from getting much food down and what is causing the nausea. But they won’t do it because of the chemo now. Yes my tumor is still growing and active and under my pet scan results you will see where doc says it will keep coming back and spread, but that is in God’s control and I am believing on Him. But I have a big big heart and I feel the pain of others, always have, I have a very sympathetic nature I guess for everyone but myself. I seldom get into a pity pot, but when my hubby lost his temper and he does lately it hurts. I feel my family may be in denial somewhat here and we have sat and talked things out before. The post op thoracic syndrome (which is rare my doc says) is very painful and the nausea and dry heaves cause the pain to be so much worse. I am taking Alimta chemo now and I thought it would be less side effects because it is 3 weeks apart. But yesterday it was bad, and today, still a little rough, haven’t gotten up and going yet. I am not used to seeing my husband lose his temper. my hubby does take me out to dinner but I just can’t look at food at times and begin to get it down, but I do bring home a doggie bag. My youngest son tries to cook for me but he uses too many spices and what I used to enjoy makes me sick and he is a good cook. Yesterday, I was having trouble swallowing with my stomach and esophagus, and could not take all my meds for pain nor eat much, but did get some food down. I’m sorry, I just never complain much and I didn’t want to make anyone feel bad here. But I do appreciate your info. And one thing is for sure there is always someone else worse off … I still cry in the Hallmark movies, joy and sadness. Your right I need to pull myself up by my boot straps as Richard would say (a friend of mine with the Lord now) and keep on keeping on. I only pray I can start to be of some help around here again and lessen my loved ones burdens. I also know that Moms and wives and daughters have a different nature than men and tho men can be understanding they are not women with a woman’s heart, there is a difference, no matter how loving they can be unless they been there done that they just don’t really understand all. Reckon that’s why God made us women! Gotta run nausea seems to be taking over here. It is so good to have someone to talk to openly. I feel blessed! Hugs and prayers for all of you and a grateful and thankful heart for being here! Sally

I am so sad right now….Today I am so sick and hurting from the Alimta and the pain I always have because I can’t get all my meds down, and so weak and my bowels are really constipated causing pain too.. I have no Christmas decorations up yet, one son with infection in his lungs from copd, my youngest facing possible surgery with this tumor on his spine and he is scared and on pain pills with the sciatic pain and he’s also an alcoholic fighting to stay sober to boot….my husband just is overloaded taking over all that I do and losing his temper. Neither son has transportation to take them anywhere. There is no Christmas cheer in this home and no decorations and no gifts bought without me and I’m the only one who has the heart to understand all that is going on and I just don’t have the strength to fight right now. And I am in tears here and praying for a good day to come again. No one seems to be really working together here without me. Christmas is a fun and loving time and this could be my last and I was so in hopes to have some good days to do all the decorating and shopping that needs to be done to make things bright and cheerful. And I don’t want them to know how really sick I feel here. I am so missing the joy of Christmas Spirit and so very sad I can’t get things somewhat normal around here. Guess I am what one would say depressed right now, but you all say this is where we let it all out and that is what I am doing. I can use prayers for peace and joy and feeling better to do what all I need to do and get some cheer going in this home. Anyone else going through this right now? How can I change things….I have always been the strong, dependable, understanding one as Momma and wife and I feel I am hurting everyone right now. Well just wanted to talk to someone here thanks for listening…..hugs and prayers, Sally

Hi Elyse, I don’t know that we are ever really done with the battle when once diagnosed with CA. But I do know we are “CA survivors” and that’s the way I like to think of myself. I learned this from the group. Even tho my CA came back and I have gone through one 6 mo. Round of chemo and am now starting another treatment tomorrow, I have survived this CA for 1 yr. 2 mo. Since my L lobectomy. This gives me such a much more positive attitude. I learn so much reading all in the group here that is so encouraging and inspirational. So many are CA free at present or in remission and they each one give me so much hope and faith. One thing we all know is that God is very present with us and He gives us the strength we need for each new day. These are just my thoughts here, would like to hear what the others have to say too! I know I was CA free after my surgery and 4 ½ mo. later it came back one me, but that doesn’t mean I can’t conquer this CA too, its just that my battle is still going but I’m not alone and I will win this battle too! Love and hugs, Sally

Thanks Connie, I agree with you. I did post an update on the forum. I've already had lots of help here reading others sites and their trmts. etc... and their survival through all, same as me joining the ranks of survival. Don't know what I really feel here considering it is growing and active and new trmt to start up. But have read about alimta on many others and some it helped so looking with a positive attitude I reckon, really just feel a little numb making all the moves whatever I'm told to do here more or less. Course I have the greatest confidence in my doc. You know he had a patient react to one of the drug used and he had searched everything trying to find a side effect that fit his patient but did not find any however, he notified FDA of this because his heart and experience told him it was the chemo drug his patient reacted to. Pt. is okay by the way. Course as I always keep saying God is in control, not me, not the docs, but He does give the wisdom and knowledge and guidance to them through prayers. So keep on, keeping on here! love, prayers and hugs, Sally

Saw my onc today, he is such a sweetie, I have a good doc that has my interest at heart. Okayl...my cancer is growing again and active. I will start Alimta next Thursday. One trmt. q 3 weeks and it will only take an hour as opposed to 5 hrs. Should have less side effects. Have to take folic acid before and during trmt. Also will have steroids for 3 days at trmt. time and the Vit. B12 inj. which I received one today, but also with each trmt. I am scheduled for 3 trmts. then another pet scan. Also, He wanted to use blastin (msp) along with it but fears hemorrhaging with me since coughing up blood was my first warning of cancer and also because it is the squamous cell CA. I will go ahead and do this trmt. tho I wasn't sure I would, we decided to do what ever we could at this time. Doc said it would only continue to grow and spread if I didn't and from the way it is acting I do believe him. I know many here have had the Alimta trmts. w/blastin combination and did well and some reacted. So, am hoping all goes well here with this and this little booger gets zapped! love and prayers for all, Sally

Hi Connie….Gee willikers….you have already been through so much, what a trooper you are and such an inspiration to all of us. You let us know the date in Dec. and we will all be on our knees storming heaven with prayers for you and trusting in God for a good outcome and a speedy recovery. We all need you here, you’re a big part of this group always there for us and we will be there for you. I keep saying we here, guess I just kinda feel like we are one family in this group. You’re a real fighter and you will win this battle too. With God on your side you can’t lose! Special hugs and strong prayers…Sally

Pet scan ll/27/02 There is a persistent single area of increased metabolic activity in the left lung (surgical lung, lower lobectomy 9/7/06). On the prior study this measured approsimately 1.4. The activity is increased. It currently measures approx. 5.7. The nodule also appears slightly larger on CT portion of the examination. Impression: The left lung nodule shows increased metabolic activity when compared to the prior study. Does this sound aggressive or non aggressive. I am worried he will discuss more chemo on me tomorrow. But if it is not all that aggressive then he may say lets wait a little longer? I don't really understand all that I read here and I know some of you do soooo any help with explanations will be appreciated! Thanks, hugs and prayers for all...Sally

I am still having bad nausea and the vomitting is getting worse. I have a pet scan coming up tomorrow and I will get the results the next day. At present I am really scared that I may have stomach cancer. Most of the time no matter what food is in my stomach I will have dry heaves which plays chaos with my chest post op surgery syndrome causing the pain to be much worse. However, today it is productive and I am throwing up everythig that goes in. I also run a low temp off and on. Once the vomitting or dry heaves are over, then I feel better for a short while. I know I am having some symptoms of stomach cancer and I am scared. Has anyone else gone through all of this after chemo (mine had to stop Aug. 1st). My Dad had lung cancer/lobectomy but his cancer did not return for 6 yrs., then he joined our Lord, it also spread to his brain at that time. I am scared because my cancer already returned so quickly 4 1/2 months. Appreciate your prayers for my pet scan to be a clean one tomorrow, I've been standing strong here through all, but this nausea/vomitting is beginning to take it out of me making me weak and fear creeps in when you don't feel good all the time. Hope you all had a blessed Thanksgiving! And I thank you for any comments herel Love and prayers for all....Sally

Hi Muriel...I will get the results from my scan the next day. I always go to the hospital and pick up the report before I see the doc. I will see my onc on the 29th. The hospital is very good to me as they will call me as soon as they get the report in, they are pulling for me too! I meet so many nice folks through all of this. Hugs and prayers, Sally

Thank you all for your words of wisdom...it is so good to know that I am not alone here with these feelings and that they are somewhat normal after all! And I am a cancer survivor, this is positive thinking as I have survived through the surgery and the chemo...a survivor of 1 yr. 2 months and plan on keeping on, keeping on. Just have to get this upcoming pet scan out of the way and am planning on good news to come with it and if not, then I will handle it. Even better now that I have others to share with, the long lasting side effects etc... and understand them better too. I am walking the road to recovery, though it may be tough there is a light here to work towards and know if I have a bad day I can come here and let it all out. I really don't have much to gripe about, just understanding all going on, I am blessed, very much so and I thank God for each new day. I know the chest pain drags me down at times because it is never gone and gets to a 12 on a scale of 1-10 but with the new meds it does go down to a 4 or 5 in between doses. That is a blessing. The biggest blessing of all is this is 1 yr. 2 mo. later since my first diagnosis...I like the positive thinking that I am a cancer survivor!!!! All praise and glory to God! God bless you all, my prayers are with you too!...Sally