Please, I need someone to talk with...

Pelley
Pelley Member Posts: 5
edited March 2014 in Lung Cancer #1
Here is my story in a nutshell. I am 31 years old and the youngest of 4 daughters. I currently live several provinces away from my parents and only get to go home, basically, during times of illness. My father was diagnosed with throat cancer at the age of 49 so he has been battling it for 11 years. It devastated my family to no end to watch him go through radiation, surgeries and hyperbarics. Needless to say, he is now alive without his voicebox and many other tissues / muscles in the neck region; however, is doing fine. My mother has always been there by his side and has been an absolute rock in this whole battle.

Since July, my mother has had a cough. My dad had to have another CAT scan last week because another lump was detected in his chest. We were devastated. Mom decided to have a chest x-ray on the same day since she was in the hospital with dad, anyway. She found out the next morning that she has small cell squamous carcinoma in both lungs. I am finding it extremely hard to cope with this. The doctor lied to her and said that she has the best cancer, it responds well to chemo...blah blah. The doctor later told my sister that she has a year, maybe two, left IF she responds to chemo. I don't know what to do. I can't begin to explain to you the pain of possibly losing both parents at once. Tell me there is hope for her. If someone had told me that dad had died, I would have been crushed but yet it was expected. My mother is only 54 years old. Please, help.

Comments

  • ernrol
    ernrol Member Posts: 90
    #2
    Pelley,

    There are many survivors of small cell squamous carcinoma. There is no cancer that someone has not beaten. I would recommend that your mom first get a second opinion. Then find a doctor that believes that he can treat her with success. I had nsclc and was told there was no cure. My story is posted here just put ernrol in the search widow at the top then click on ernrol at the right. If I can answer any questions let me know. If you would like a web site where there are more SCLC survivors let me know and I will mail them to you.

    Stay positive,

    Ernie
  • itrustgod
    itrustgod Member Posts: 41
    #3
    Pelley,
    never lose hope. If anything, think about your dad! He survived cancer, so you should not have any doubts that your mom can not do the same. My mom was also diagnosed with NSCLC just over a month ago; she is only 45. I am an only child so I can definitely emphatize with you... I'm also only 19 and at this age, this is the time for me to "discover myself" and enjoy university life getting to know new people. I found out aboutmy mom just 3 days after my 19th birthday (I've been looking forward to my "legal age" bday for years!) and then something like this happens, and bam you feel like the world turned upside down. it's so painful knowing that someone you love so much is going through something like this. I've been told this so many times, and I agree with it: the best thing you can do at this moment is pray to God and ask for His mercy... Learn to trust God and the people who are taking care of her. Be there for your parents, let them know that they have your full support. I go through times when I feel so helpless too and I go on this website and I am overwhelmed by how supportive people are. Pelley, NEVER LOSE HOPE. This battle can definitely be fought. keep a positive attitude. hang on to your Faith and talk to people whenever you feel upset. I don't even know how to put this into words, but Pelley if you need someone to talk to, just let me know. I'm going through the same things that you are. I will keep your family in my thoughts and especially my prayers. God bless you.
  • kaitek
    kaitek Member Posts: 156 Member
    #4
    Pelley,

    I am so sorry to hear of your parents' health crises. We've grown up so long with our parents with their loving care that it is unthinkable to lose them regardless of their age.

    Your story reminds me of Ken Griffey, Jr. who learned both his parents were stricken with cancer only a few days apart. I think in his favor is that both parents have "curable" cancers and were caught early.

    I hate that any doctor would give any fatalistic prognosis. Just yesterday I was reading up on cancer news on a local newspaper website and it was heartening to read a story of doctors not having that attitude.

    I don't know if my mom's oncologist would have cited any of that statistical prognosis, as I preempted it. But I overheard a conversation with another oncologist with a lung cancer patient receiving chemo (alongside us) where he told him that he didn't think that way of giving a terminal dateline. The patient wanted to go over the 4 to 6 months he heard. His daughter and the oncologist clarified that the 4 to 6 months was only for the case of if he didn't receive treatment. The onc told him that he wanted to take it day-to-day and he was looking to keep him around for a few years.

    What I take encouragement and heart from is keeping up on the latest advances and strides in cancer treatment. I think if you read the articles you may find hope of the promising treatments for any stage and type of lung cancers. One in particular is Sutent, which targets the cancer cells. Some of those drugs are still in clinical trials, but I see them as safety nets and more options.

    What I would advise is to request for your mom's cancer cells to be tested for chemosensitivity or chemoresistance. They will have an 80% (I think) chance of determining an effective chemo protocol.

    Do what you can to become informed; it will help you feel in somewhat control of this awful situation. Then, you can ask your parents' doctors about those treatments.

    Ernie and I are proponents of dietary aids in enhancing cancer treatment. I'm always afraid of coming off as a snake oil salesman so you can decide if you want to look into both foods and herbs as aids.

    It's difficult to see any hope now, but I think once your mother starts treatments, you may become more encouraged. After all, some patients DO respond to chemo. My mom is one of them, along with the other survivors on this site. To steal Plymouthean's lines, you have to think your mom is among them, too.

    Much luck to you and your family.
  • michaelcie
    michaelcie Member Posts: 133
    #5
    Hi Pelley, the doctor did not lie to you, I have small cell lung cancer and am here going on five years. I was told I would neverleave the hospital and given a 5% chance to live a year. SCLC does respond better to chemo than NSCLC. I would not give up , that is the most important part in this. I would also ask about radiation. I had cisplatnum, taxol, vp-16 and carboplatnum, and also six and a half weeks of radiation six times a week. never give in and if you want to talk , just say so. Hugsss and stay strong for them Mike, I am 55 now, and was 50 when diagnosed.
  • Pelley
    Pelley Member Posts: 5
    #6
    michaelcie said:

    Hi Pelley, the doctor did not lie to you, I have small cell lung cancer and am here going on five years. I was told I would neverleave the hospital and given a 5% chance to live a year. SCLC does respond better to chemo than NSCLC. I would not give up , that is the most important part in this. I would also ask about radiation. I had cisplatnum, taxol, vp-16 and carboplatnum, and also six and a half weeks of radiation six times a week. never give in and if you want to talk , just say so. Hugsss and stay strong for them Mike, I am 55 now, and was 50 when diagnosed.

    Hi Mike,

    I received so many beautiful responses to my post; however, yours hit me the most. When you started by saying, '...the doctor did not lie to you...', I felt tears immediately come to my eyes as I truly thought that you were going to say that your father / mother was given to same prognosis and died. I feel that I can breathe again after reading your whole response. God, Mike, I pray that my mother is as strong as you. She actually laughs when I call her and ask her how she is feeling. She'll always respond along the lines of, 'Well, today I cleaned the bathroom, did the laundry, bought groceries, etc." And I then say back to her, "Oh, so you were lying in bed and dying, were you?" She thinks it's funny how people are now reacting when they see her as they envision that she is on her death bed. I know that she is a fighter. She has been to hell and back with my father. I find that as their daughter, it hits me in waves as I still can't believe that she is sick.

    Thank you so much for your words of encouragement. I will certainly share your story with my mother and I pray that you continue in your success at beating this terrible evil.
  • michaelcie
    michaelcie Member Posts: 133
    #7
    Pelley said:

    Hi Mike,

    I received so many beautiful responses to my post; however, yours hit me the most. When you started by saying, '...the doctor did not lie to you...', I felt tears immediately come to my eyes as I truly thought that you were going to say that your father / mother was given to same prognosis and died. I feel that I can breathe again after reading your whole response. God, Mike, I pray that my mother is as strong as you. She actually laughs when I call her and ask her how she is feeling. She'll always respond along the lines of, 'Well, today I cleaned the bathroom, did the laundry, bought groceries, etc." And I then say back to her, "Oh, so you were lying in bed and dying, were you?" She thinks it's funny how people are now reacting when they see her as they envision that she is on her death bed. I know that she is a fighter. She has been to hell and back with my father. I find that as their daughter, it hits me in waves as I still can't believe that she is sick.

    Thank you so much for your words of encouragement. I will certainly share your story with my mother and I pray that you continue in your success at beating this terrible evil.

    Hi again Pelley, your Mom sounds like a wonderful person, and the most important thing she can do is what she is doing, go on with her life and fight, the more she does not give in , the better she will do!! I am sure with your support and her mindset , she will beat this !! I will keep both of you in my prayers , and am here if she wants to talk. Huugssss and Godbless Mike ,and yes my wife and two children , (daughter 23, son 22) helped me get thru this , it was an ordeal , but I am here and happy. hugss again, and thank God, your Mom has such a wonderful daughter. Mike
  • Pelley
    Pelley Member Posts: 5
    #8
    michaelcie said:

    Hi again Pelley, your Mom sounds like a wonderful person, and the most important thing she can do is what she is doing, go on with her life and fight, the more she does not give in , the better she will do!! I am sure with your support and her mindset , she will beat this !! I will keep both of you in my prayers , and am here if she wants to talk. Huugssss and Godbless Mike ,and yes my wife and two children , (daughter 23, son 22) helped me get thru this , it was an ordeal , but I am here and happy. hugss again, and thank God, your Mom has such a wonderful daughter. Mike

    Hi Mike,

    Well, I can't take all the credit for being a wonderful daughter as there are 3 more of us! :) I told my mother about you and I could hear her breathe a sigh of relief in the phone when I told her for how long you have had it. She asked me some questions and, I hope you don't mind, I will relay them to you. If you don't feel comfortable answering them on the message board, please feel free to write me at blondenewfie@hotmail.com. Well, here I go!:

    - What symptoms did you exhibit prior to diagnosis?
    - How extensive was the cancer when you were diagnosed and did it spread anywhere else? The reason for this question is because you mentioned you had radiation. My mother cannot have radiation as the cancer is not localized to one area for them to target.
    - What was chemo like for you and at what intervals did you receive it? (i.e. once a week, twice a week etc.)
    - What other tests did they do on you when you were first diagnosed? Did they do a bone / brain scan?

    Again, Mike, I am sorry for all of the questions. My family is just so confused right now and would like to know how you dealt with everything and what to expect. I hope to hear from you and please take care of yourself and your family.
  • michaelcie
    michaelcie Member Posts: 133
    #9
    Pelley said:

    Hi Mike,

    Well, I can't take all the credit for being a wonderful daughter as there are 3 more of us! :) I told my mother about you and I could hear her breathe a sigh of relief in the phone when I told her for how long you have had it. She asked me some questions and, I hope you don't mind, I will relay them to you. If you don't feel comfortable answering them on the message board, please feel free to write me at blondenewfie@hotmail.com. Well, here I go!:

    - What symptoms did you exhibit prior to diagnosis?
    - How extensive was the cancer when you were diagnosed and did it spread anywhere else? The reason for this question is because you mentioned you had radiation. My mother cannot have radiation as the cancer is not localized to one area for them to target.
    - What was chemo like for you and at what intervals did you receive it? (i.e. once a week, twice a week etc.)
    - What other tests did they do on you when you were first diagnosed? Did they do a bone / brain scan?

    Again, Mike, I am sorry for all of the questions. My family is just so confused right now and would like to know how you dealt with everything and what to expect. I hope to hear from you and please take care of yourself and your family.

    Hi Pelly, I started out being diagnosed with pluracy and pnemonia, and given antibiotics ,but they did a chest x-ray also. Two weeks after chest x-ray, my primary doctor called and said he did not like what he is seeing and ordered a ct-scan. I had that and he refered me to a thorasic surgeon, he did a biopsy , thru left rib cage. I was diagnosed small cell lung cancer and refered to an oncologist. She did not lie to me , she said I had a 5% chance of survival but she was going to throw everything at it. I started with cisplatnum and vp-16. The tumor was too large to get into one port of radiation. It measured 5 inche x 4 inches x 3inches, it was on my left lung, in my lymph nodes, in my lung, wrapped around my aorta artery and pushing against my esophogus. I had three nine hour day chemo's and off for three weeks and then three more days. The second cycle I crashed, I had a very bad reaction and had to be hospitalized. My oncologist then changed my chemo to carboplatnum, vp-16 , and taxol. Again three nine hour days of chemo. After my fourth cycle the tumor shrank small enough to get into one port of radiation. I received radiation to my chest, side and back six days a week for six and one half weeks. I had a total of six cycles of chemo and rads. I am not cured but the cancer is inactive. The tumor is the size of a large walnut and is dormant. My oncologist says I am not cured but it is inactive and it will be five years this coming february. I hope this helps some and if you have any more questions , feel free to ask. Godbless , Mike
  • Gramsie
    Gramsie Member Posts: 2
    #10
    michaelcie said:

    Hi Pelly, I started out being diagnosed with pluracy and pnemonia, and given antibiotics ,but they did a chest x-ray also. Two weeks after chest x-ray, my primary doctor called and said he did not like what he is seeing and ordered a ct-scan. I had that and he refered me to a thorasic surgeon, he did a biopsy , thru left rib cage. I was diagnosed small cell lung cancer and refered to an oncologist. She did not lie to me , she said I had a 5% chance of survival but she was going to throw everything at it. I started with cisplatnum and vp-16. The tumor was too large to get into one port of radiation. It measured 5 inche x 4 inches x 3inches, it was on my left lung, in my lymph nodes, in my lung, wrapped around my aorta artery and pushing against my esophogus. I had three nine hour day chemo's and off for three weeks and then three more days. The second cycle I crashed, I had a very bad reaction and had to be hospitalized. My oncologist then changed my chemo to carboplatnum, vp-16 , and taxol. Again three nine hour days of chemo. After my fourth cycle the tumor shrank small enough to get into one port of radiation. I received radiation to my chest, side and back six days a week for six and one half weeks. I had a total of six cycles of chemo and rads. I am not cured but the cancer is inactive. The tumor is the size of a large walnut and is dormant. My oncologist says I am not cured but it is inactive and it will be five years this coming february. I hope this helps some and if you have any more questions , feel free to ask. Godbless , Mike

    Mike, I was diagnosed in June with Inoperable NSCLC. I was told it was inoperable because of being so close to the aorta. I have taken cisplatin and etoposide along with 35 radiation treatments. I am now doing taxatere every 21 days for three times. I had 40% shrinkage after the cisplatin, etoposide and radiation. P;ease tell me there is hope. Evelyn

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