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Comments

  • joyzee
    joyzee Member Posts: 33
    Good Luck

    I Will say a prayer for you. Good Luck tomorrow and God Bless
  • pkaz53
    pkaz53 Member Posts: 84
    marijune said:

    Thanks pkaz53
    Thank you very much for the warm welcome. I am so glad I found this site as I know I am not alone in this battle. I havent even started my treatment yet and I am very scard. I think taking all the tests ct scans, pet scans x-rys, biopsy etc. the waiting for results has put a real fear in me, and now knowing what I had and the treatment I will receive is frightening. Hopefully I will start treatment soon & perhaps that will start me on the road to recovery. I have to travel about 45 minutes for each treatment. Will I be terribly sick before I get home. It makes me happy to hear of survivor storys and I am very happy for you.

    Marijune
    Stay positive it's the waiting and uncertainty about tests or impending treatments that keep us off balance and scared,no matter what the outcome my be, keep on fighting never give up.

    I was fortunate, most of my tests and treatments were done within a 5 to 15 minute drive from where I live, at a local radiation and oncology center, although occasionally, I would have to travel to University of Penn. Hospital which was about a 2 to 3 hr drive from where I live.

    I hope everything works out well for you keep us posted --We're all pulling for you, a lot of us walked and continue to walk in your shoes.

    All my hopes and wishes, Paul.....
  • letswin
    letswin Member Posts: 10
    marijune said:

    chemo and hair loss
    letswin,
    Are you getting chemo and radiation at the same time?. Do they do both on the same day?. I start next week and cant get rid of the fear. How sick will I be,and when does the hair fall out and how do i prepare myself for this. Are you losing your hair and how do you handle it.
    Should I get a wig and scarf before I begin the chemo. I am scard and please can anyone tell me how to ease the tension.

    Chemo and Radiation
    I'm sorry I didn't see this post earlier. I have chemo and radiation at the same time. The chemo is once a week for 3 weeks in a row, then a week off. The radiation is every week day for 28 days, so I do have chemo and radiation on Mondays.

    I have been fortunate as far as sickness, but my hair is falling out. I went to lunch with friends yesterday and wore a hat. There are websites especially for chemo patients, including ACS which have hats and wigs. I ordered a wig and some hats from this site and had them on hand.

    My hair didn't start falling out until I had finished my first round of chemo. I knew it was coming, so I wasn't in complete shock.

    I wish there was more I could say to reassure you, but I think you will do just fine. One day at a time, one issue at a time.

    Love, Julie
  • letswin
    letswin Member Posts: 10
    marijune said:

    chemo and hair loss
    letswin,
    Are you getting chemo and radiation at the same time?. Do they do both on the same day?. I start next week and cant get rid of the fear. How sick will I be,and when does the hair fall out and how do i prepare myself for this. Are you losing your hair and how do you handle it.
    Should I get a wig and scarf before I begin the chemo. I am scard and please can anyone tell me how to ease the tension.

    Chemo and Radiation
    I'm sorry I didn't see this post earlier. I have chemo and radiation at the same time. The chemo is once a week for 3 weeks in a row, then a week off. The radiation is every week day for 28 days, so I do have chemo and radiation on Mondays.

    I have been fortunate as far as sickness, but my hair is falling out. I went to lunch with friends yesterday and wore a hat. There are websites especially for chemo patients, including ACS which have hats and wigs. I ordered a wig and some hats from this site and had them on hand.

    My hair didn't start falling out until I had finished my first round of chemo. I knew it was coming, so I wasn't in complete shock.

    I wish there was more I could say to reassure you, but I think you will do just fine. One day at a time, one issue at a time.

    Love, Julie
  • marijune
    marijune Member Posts: 45
    letswin said:

    Chemo and Radiation
    I'm sorry I didn't see this post earlier. I have chemo and radiation at the same time. The chemo is once a week for 3 weeks in a row, then a week off. The radiation is every week day for 28 days, so I do have chemo and radiation on Mondays.

    I have been fortunate as far as sickness, but my hair is falling out. I went to lunch with friends yesterday and wore a hat. There are websites especially for chemo patients, including ACS which have hats and wigs. I ordered a wig and some hats from this site and had them on hand.

    My hair didn't start falling out until I had finished my first round of chemo. I knew it was coming, so I wasn't in complete shock.

    I wish there was more I could say to reassure you, but I think you will do just fine. One day at a time, one issue at a time.

    Love, Julie

    first chemo yesterday
    letswin,
    I had my 1st chemo wednesday. 1/2 hour chemo then 1 hour taxol. Immediately after the chemo I went to radiation. I will have raqdiation for 7 days excluding sat & sun, the chemo again in 8 days for taxol only, then off for 12 days then start again for 2 more rounds. If the tumor shrunk I may be a candidate for surgery. If not I will have to go another round of chemo. Taking the chemo didnt bother me as I kept telling myself it is destroying the c cells. Will you have surgery after your treatments?. I am quite tired but I try to keep moving, but I am having trouble sleeping. Thank you for your reply it is so nice to hear from every and I am so glad i found this site.
    God Bless
  • marijune
    marijune Member Posts: 45
    pkaz53 said:

    Hi Marijune
    I, and everyone of us on this board live with the fear of cancer or that cancer may return
    It's so good that we have a place such as this where we can communicate and share our experiences--We all pray and give hope to each other and become family, we cheer at good news and share our sorrow when things get difficult.There are so many knowledgeable people on this site it amazes me.
    I am an 8 year survivor of bladder cancer and a 6 year survivor of sclc and the fear is still with me ---the fear is normal --no one knows how much time one has left.
    Marijune welcome to our community all our hopes and wishes are with you.

    Be Well,Paul....

    Wonderful to hear from survivors
    Pkaz53,
    There is so much happiness in hearing from survivors. 8 years for bladder and 6 years for sclc. That is wonderful and I am so happy for you. Do you mind me asking if you had surgery for your sclc?.
    I had breast c 5 years ago, had a lumpectomy and radiation, now I am faced with nsclc. The doc said it is a new c and not connected with the breast c., but this time I have to do chemo & radiation.
    You are correct when you say the fear is always with you and the worst is waiting for test results, but I try to live without the fear as much as I can so I can enjoy a normal life.
    Thank you for your nice letter and thanks for welcoming me to this wonderful board. Bless you.
  • marijune
    marijune Member Posts: 45
    joyzee said:

    Carbo ad Taxol treatment
    Marijune

    I was treated for stage 3b lung cancer from 4/09 thru 6/09(radiation and chemo,no surgery)afterwhich, I was told that the tumor in the left lung and lympnode in right lung had successfully been treated. I was told to take off 3 to 4 weeks, and then we will reasses. However, before the 3/4 weeks were up,I felt a knot on my right shoulder between the ear and shoulder. I was told that this is common with Lung cancer and I was again treated with radiation and chemo starting 8/09. I had my last radiation session 10/09, and my last chemo 12/09. I had another PET scan on 1/10/10, and I was told all signs of cancer were gone.

    My treatment consist of taxol and carbo along with radiation. I had radiation at 7:30 and chemo at 8:30 everyday for 38 days. I even drove myself to the treatments. I had no serious side affects. I knew to expect side affects. I did have the side affects but it wasn't unbearable. I was fatigued, couldn't stand the smell of food, and didn't want to eat. My dr precribed a pill for the nausea, I wasn't working so I came home and rested after each treatment, and as far as eating, I drank ensure, ate fruit,drank fruit drinks and v8 juice. I had lost 35 lbs before I was diagnosed, however, I didn't lose any weight during treatment. Today, I am now back to my old weight. My dr was amazed at how well my body did with these 2 drugs along with the radiation, turn the fear over to your higher power, maintining your stress level and peace of mind is very important. I hope this helps

    carbo and taxol
    joyze, Did you take taxol and carbo along with radiation every day for 38 days ( does that exclude weekends)?. Mine is chemo 2 days a week, radiation 8 days excluding weekends, then off about 10 days. There weill be a phase 2, then a phase 3.
    Did you lose your hair and how many treatments before you lost it.
  • joyzee
    joyzee Member Posts: 33
    marijune said:

    carbo and taxol
    joyze, Did you take taxol and carbo along with radiation every day for 38 days ( does that exclude weekends)?. Mine is chemo 2 days a week, radiation 8 days excluding weekends, then off about 10 days. There weill be a phase 2, then a phase 3.
    Did you lose your hair and how many treatments before you lost it.

    carbo & taxol

    Yes, I took chemo and radiation for 38 days but only Mon thru Fri, then went off everything. I didn't have a phase 2 and 3, Docs thought I was in remission after frist treatment until I felt knot in my neck. then I was put on 32 days Mon thru Fri radiation, and once week for chemo. I started losing my hair after 1st month, but didn't go totally bald including eyebrows, eyelashes, underarms, etc until 6 months into treatment. As I stated earlier, I enjoyed playing with wigs vs letting hair loss get me down. God Bless.
  • letswin
    letswin Member Posts: 10
    marijune said:

    first chemo yesterday
    letswin,
    I had my 1st chemo wednesday. 1/2 hour chemo then 1 hour taxol. Immediately after the chemo I went to radiation. I will have raqdiation for 7 days excluding sat & sun, the chemo again in 8 days for taxol only, then off for 12 days then start again for 2 more rounds. If the tumor shrunk I may be a candidate for surgery. If not I will have to go another round of chemo. Taking the chemo didnt bother me as I kept telling myself it is destroying the c cells. Will you have surgery after your treatments?. I am quite tired but I try to keep moving, but I am having trouble sleeping. Thank you for your reply it is so nice to hear from every and I am so glad i found this site.
    God Bless

    chemo
    Actually I had my left upper lobe removed 10/26/09. I had complications from the surgery, paralysis of vocal cords and difficulty swallowing. I went back into the hospital twice for dehydration before then put in a PEG tube, which made all the difference as far as nutrition. I am eating well on my own now, but still have tube feedins until after treatment. They feel with the radiation and chemo, the remaining culprets should be destroyed. I take an Ativan on the days I have chemo, because I tend to stay awake and toss and turn. I guess insomnia is a side effect of chemo. Other than the chemo days, I have no trouble sleeping.

    Take care and keep us posted.

    Julie
  • pkaz53
    pkaz53 Member Posts: 84
    marijune said:

    Wonderful to hear from survivors
    Pkaz53,
    There is so much happiness in hearing from survivors. 8 years for bladder and 6 years for sclc. That is wonderful and I am so happy for you. Do you mind me asking if you had surgery for your sclc?.
    I had breast c 5 years ago, had a lumpectomy and radiation, now I am faced with nsclc. The doc said it is a new c and not connected with the breast c., but this time I have to do chemo & radiation.
    You are correct when you say the fear is always with you and the worst is waiting for test results, but I try to live without the fear as much as I can so I can enjoy a normal life.
    Thank you for your nice letter and thanks for welcoming me to this wonderful board. Bless you.

    Ditto --Wonderful to hear from a survivor
    Your so brave -A survivor of breast cancer 5 years, its tough when you put a little distance from your first bout with cancer and it seems that your life gets back to normal or the new normal, because we are not the same as we were before cancer---you think you have this beat and then you have to go through it again,not fair.

    You asked if I had surgery with the sclc no I did not, let me try to tell you a little bit about my journey with cancer :

    I had a 23cm tumor removed from my bladder in 2001,what surprised me and my urologist was that it was low level. I was able to keep my bladder and started doing several cycles of BCG and mitomycin did several biopsies some polyps removed but everything was ok.

    Fast forward to spring of 2003 I was scheduled to do a biopsy of the bladder at a local hospital -6 months had lapsed since my last chest x-ray and a new one was ordered the results of that x-ray revealed that I had a shadow on my right lung. I did two bronhoscopes with tissue samples removed,cat scans, and MRI's I was diagnosed with sclc, my cancer team at University of Penn told me there would be no surgery the cancer was aggressive and was to be treated with chemo (cisplatin and etoposide )in combination with radiation to my chest and then PCI to the brain.

    My Urologist told me that the bladder cancer that I had was non-invasive and shouldn't have went to the lung my Onocologist seemed to agree.

    By the good graces of God,my Doctors,family and many prayers I'm still here.
    I still get my bladder scoped every 3 months and do cat scans upper and lower for the lung and chest area --lots of side effects from the treatment but the options are unacceptable.

    I have a lot of living to do and so do you Marijune keep fighting, don't let this monster get the best of you.
    UYou are in my thoughts and prayers, Paul
  • marijune
    marijune Member Posts: 45
    pkaz53 said:

    Ditto --Wonderful to hear from a survivor
    Your so brave -A survivor of breast cancer 5 years, its tough when you put a little distance from your first bout with cancer and it seems that your life gets back to normal or the new normal, because we are not the same as we were before cancer---you think you have this beat and then you have to go through it again,not fair.

    You asked if I had surgery with the sclc no I did not, let me try to tell you a little bit about my journey with cancer :

    I had a 23cm tumor removed from my bladder in 2001,what surprised me and my urologist was that it was low level. I was able to keep my bladder and started doing several cycles of BCG and mitomycin did several biopsies some polyps removed but everything was ok.

    Fast forward to spring of 2003 I was scheduled to do a biopsy of the bladder at a local hospital -6 months had lapsed since my last chest x-ray and a new one was ordered the results of that x-ray revealed that I had a shadow on my right lung. I did two bronhoscopes with tissue samples removed,cat scans, and MRI's I was diagnosed with sclc, my cancer team at University of Penn told me there would be no surgery the cancer was aggressive and was to be treated with chemo (cisplatin and etoposide )in combination with radiation to my chest and then PCI to the brain.

    My Urologist told me that the bladder cancer that I had was non-invasive and shouldn't have went to the lung my Onocologist seemed to agree.

    By the good graces of God,my Doctors,family and many prayers I'm still here.
    I still get my bladder scoped every 3 months and do cat scans upper and lower for the lung and chest area --lots of side effects from the treatment but the options are unacceptable.

    I have a lot of living to do and so do you Marijune keep fighting, don't let this monster get the best of you.
    UYou are in my thoughts and prayers, Paul

    hear froma survivor
    plaz53, thanks for telling me your story. I am so happy for you and I hope you never have to hear the c word again.
    My Mother was a 25 year survivor of breast cancer. back in those days they automatically did a masectomy. She never had another cancer but she had heart problems and passed from that in 86. I was hoping my c would never return but it did in a different place. ( Dr. said its not related to the breast c).
    I had a ct scan because my blood tumor marker kept rising alto it was still in the safe zone my husband told the dr. he wanted a ct test done. Waiting for results was horrible and when we finally did see the dr he said there were 5 spots in my r lung and 2 in lymph nodes. My husband asked him to see for a 2nd opinion and he sent us to rush in chicago. A pet scan was taken and it shown there was 1 tumor and involvement in 2 lymph nodes. I am doing chemo and taxol plus radiation. They said if tumor can shrink surgery might be available. I am praying for tumor to shrink. We travel an hour both ways everyday except weekends for treatment. I am on 8 days then off 12 days. there will be 3 cycles unless more is needed.
    U also are in my thoughts and prayers.
  • pkaz53
    pkaz53 Member Posts: 84
    marijune said:

    hear froma survivor
    plaz53, thanks for telling me your story. I am so happy for you and I hope you never have to hear the c word again.
    My Mother was a 25 year survivor of breast cancer. back in those days they automatically did a masectomy. She never had another cancer but she had heart problems and passed from that in 86. I was hoping my c would never return but it did in a different place. ( Dr. said its not related to the breast c).
    I had a ct scan because my blood tumor marker kept rising alto it was still in the safe zone my husband told the dr. he wanted a ct test done. Waiting for results was horrible and when we finally did see the dr he said there were 5 spots in my r lung and 2 in lymph nodes. My husband asked him to see for a 2nd opinion and he sent us to rush in chicago. A pet scan was taken and it shown there was 1 tumor and involvement in 2 lymph nodes. I am doing chemo and taxol plus radiation. They said if tumor can shrink surgery might be available. I am praying for tumor to shrink. We travel an hour both ways everyday except weekends for treatment. I am on 8 days then off 12 days. there will be 3 cycles unless more is needed.
    U also are in my thoughts and prayers.

    Hope and Prayers are comming your way
    Marijune, thank you for telling me your story. I said a prayer at ash wednesday services last night for you and will keep you in my prayers. I believe that hope and prayer are strong medicine.
    Think positive and stay positive, its gotta be hard to travel an hour each way to get to your treatments, that in itself is going to tire you out and the treatments are going to wear you down, take in as much nourishment as you can because your gonna need a little extra in your tank for the times you can't eat, stay strong and get enough rest.
    Remember you are not alone there are a lot of people on this site that have you in their thoughts and prayers.

    Be Well, Paul ..
  • cobra1122
    cobra1122 Member Posts: 244
    marijune said:

    hear froma survivor
    plaz53, thanks for telling me your story. I am so happy for you and I hope you never have to hear the c word again.
    My Mother was a 25 year survivor of breast cancer. back in those days they automatically did a masectomy. She never had another cancer but she had heart problems and passed from that in 86. I was hoping my c would never return but it did in a different place. ( Dr. said its not related to the breast c).
    I had a ct scan because my blood tumor marker kept rising alto it was still in the safe zone my husband told the dr. he wanted a ct test done. Waiting for results was horrible and when we finally did see the dr he said there were 5 spots in my r lung and 2 in lymph nodes. My husband asked him to see for a 2nd opinion and he sent us to rush in chicago. A pet scan was taken and it shown there was 1 tumor and involvement in 2 lymph nodes. I am doing chemo and taxol plus radiation. They said if tumor can shrink surgery might be available. I am praying for tumor to shrink. We travel an hour both ways everyday except weekends for treatment. I am on 8 days then off 12 days. there will be 3 cycles unless more is needed.
    U also are in my thoughts and prayers.

    Marijune
    I have followed your posting here for awhile and you seem to be on the right road, and have a active supportive husband. I truly hope that you find the way to keep the depression at bay, I take Lorazepam (ativan) to help take the edge off. I have had my days but that is to be expected, this is not what we expected for ourselves.
    But if you read my bio you will see that I have had my share of bumps in the road, but I have learned that if I keep my spirits up and with my wifes positive support I can get through anything.
    I am a 2+yr survivor,diagnosised in 08 with stage 4 lung cancer with mets to the lymphs. I was diagnosis with NSCLC in the right lung and lymphs Multiple tumors and SCLC in the left lung again multiple tumors. They did chemo(pallative care) Carboplatin, Taxol, and Avastin for 8 treatments (each treatment lasted 8 hours every 3rd week), but because of multiple health issues I had complications and had to stop. But even with the complications I would go through it again because it bought me time. Before I started chemo we went to Sea World meeting the Kids and grandkids there. I had a mohawk with the Marine Corps colors painted in it, because I was going to war with this disease. It lasted2 treatments before it all fell out, but it was a way to get everyone to think positive and use thier humor to get through it.
    I am now on Hospice since Jan/Feb 09 they gave me 4-6 months, But I am still going and will continue to. I volunteer once a week at the Rehab Hospital my wife works at , talk to other patients trying to get them to realize that they have a life no matter what.
    I keep thinking positive and my wife is right there being supportive and helping me cherish the day, because we dont know what the future holds, we live for today, tomorrow will be here soon enough.
    I pray that you continue on this journey with a positive attitude and cherish the time you have with your husband. Everyone sick or not are all heading in the same direction, so dont let the small things get to you. I realize that when I get up in the morning I am blessed and that everything else in the day I can deal with because I am still here.

    Our Prayers and Best Wishes to You, Your Husband, and Your Family,
    Dan (cobra1122) and Margi Harmon
  • marijune
    marijune Member Posts: 45
    cobra1122 said:

    Marijune
    I have followed your posting here for awhile and you seem to be on the right road, and have a active supportive husband. I truly hope that you find the way to keep the depression at bay, I take Lorazepam (ativan) to help take the edge off. I have had my days but that is to be expected, this is not what we expected for ourselves.
    But if you read my bio you will see that I have had my share of bumps in the road, but I have learned that if I keep my spirits up and with my wifes positive support I can get through anything.
    I am a 2+yr survivor,diagnosised in 08 with stage 4 lung cancer with mets to the lymphs. I was diagnosis with NSCLC in the right lung and lymphs Multiple tumors and SCLC in the left lung again multiple tumors. They did chemo(pallative care) Carboplatin, Taxol, and Avastin for 8 treatments (each treatment lasted 8 hours every 3rd week), but because of multiple health issues I had complications and had to stop. But even with the complications I would go through it again because it bought me time. Before I started chemo we went to Sea World meeting the Kids and grandkids there. I had a mohawk with the Marine Corps colors painted in it, because I was going to war with this disease. It lasted2 treatments before it all fell out, but it was a way to get everyone to think positive and use thier humor to get through it.
    I am now on Hospice since Jan/Feb 09 they gave me 4-6 months, But I am still going and will continue to. I volunteer once a week at the Rehab Hospital my wife works at , talk to other patients trying to get them to realize that they have a life no matter what.
    I keep thinking positive and my wife is right there being supportive and helping me cherish the day, because we dont know what the future holds, we live for today, tomorrow will be here soon enough.
    I pray that you continue on this journey with a positive attitude and cherish the time you have with your husband. Everyone sick or not are all heading in the same direction, so dont let the small things get to you. I realize that when I get up in the morning I am blessed and that everything else in the day I can deal with because I am still here.

    Our Prayers and Best Wishes to You, Your Husband, and Your Family,
    Dan (cobra1122) and Margi Harmon

    Thank you cobra1122
    Cobra1122,
    Thank you very much for your very inspiring story. I have read your story and it has helped me to get a more positive altitude. I am lucky to have such a wonderful husband same as you are lucky to have such a wonderful loving wife. Each day I try to get a more positive altitude and with the help of people like you and many others on this board it has certainly helped me get thru these first few weeks. I really dont know what the future holds for me as the doctors said if tumor shrinks surgery is a possibility. I pray surgery is an option for me. I went 1 week thru chemo and rads. 2 days of chemo Carboplatin, Taxol & 7 days of rads. (one week off) Dr says there will be 3 cycles. I dont know what to think of this even tho i try to read what i can about treatment.
    5 years ago i had breast c and only had to do radiation, and that only made me a bit tired, but the chemo i had to take this time made me quite nauseau but dr gave me a different type of pill but i still get heartburn, a dry cough, aches, insomnia and tiredness. I am very thankful to find this board and be able to communicate with other caring people. Again i thank you for your encouraging and wonderful letter. God Bless you and your Family.
  • marijune
    marijune Member Posts: 45
    pet scan done
    The pet scan was different than the ct scan. I am now on chemo and radiation at the same time. 8 days of rads and 2 days of chemo a week. I dont know why they do them together as it seems like alot of people have chemo then rads or vise versa but not always together. I am in my second week and get very tired most of the time, and the chemo after several days makes me ill and without any energy. Does it get any easier or is it the same each session?
  • cobra1122
    cobra1122 Member Posts: 244
    marijune said:

    pet scan done
    The pet scan was different than the ct scan. I am now on chemo and radiation at the same time. 8 days of rads and 2 days of chemo a week. I dont know why they do them together as it seems like alot of people have chemo then rads or vise versa but not always together. I am in my second week and get very tired most of the time, and the chemo after several days makes me ill and without any energy. Does it get any easier or is it the same each session?

    Easier?
    Marijune, I have never had Rad only chemo, but from what I seen posted on the board I doubt if it will get easier. But you might pick up tips on how to deal with it alittle easier. Everyone is different and reacts differently, but from what I have read from posts on this subject you are going through what many have gone through while doing this course of treatment.
    I wish there were easy ways of doing these treatment, chemo is bad enough, or at least it was for me. I was one of those very rare people that suffered atrophy of the brain because of chemo (they say that since I was on Carboplatin, Taxol, and Avastin) they are know to braech the blood brain barrier adn that is what caused the atrophy.
    You might look further into suppliments for the fatigue, the nausea maybe lessen a little by using ginger, as for the rad there are several post on the site that might help deal with some of the side effects.

    Our Prayers and Best Wishes to You, Your Family, and Everyone else....,
    Dan (cobra1122) and Margi Harmon