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when to get a 2nd opinion

jejohn
Posts: 48
Joined: Nov 2010

Hey! This is my first time to post on here. I have stage 4 lung cancer with met. to bones. I was on carbo, alitma, and avastin and after 4 treatments, I had an excellent PET in December. After 2 more treatments, my dr. took me off of carbo. My PET last week now shows my cancer has spread to several spots on my spine, where before it was only in my right arm. It has also spread in tiny spots to my lungs. I was so disappointed and feel naive and stupid for thnking I could get this disease in remission. My dr.had said he thought since I was doing so well, it could go in remission and he would radiate the tumor. I start a new chemo tomorrow. I dont understand why the tumor has not already been radiated or why he took me of carbo. I am just wondering if anybody else has been in this situaton. I am so down and am losing hope.

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NayPaul
Posts: 231
Joined: Oct 2010

with the treatment plan or your doctor. I would always recomend a 2nd opinion at the outset. If you did not do that, then do it now. Its not always a matter of finding out other treatment options, sometimes it is a matter of confirming that you are on the right path.

jejohn
Posts: 48
Joined: Nov 2010

Thanks for your info. I guess I am just afraid that there is nothing else they can do, or that my dr. made a mistake that cant be undone. I just dont know what to do.

JohnBinDC's picture
JohnBinDC
Posts: 91
Joined: Nov 2010

I got a second opinion after I was first diagnosed. I wanted to confirm the diagnosis and see if there was a different aoproach to treatment from one hospital to another. I agree with Paul, if you are not comfortable, then get a second opinion as soon as you can. We are dealing with our lives and can't worry about hurting one doctor's feelings by seeking a second opinion on treatment. Good doctors will welcome a second opinion.

Best wishes as you carry on your fight!

Regards

John

jejohn
Posts: 48
Joined: Nov 2010

Thanks. What all treatments have you completed? Ever heard of The Cancer Treatment of America in Chicago or Winship in Atlanta Ga?

JohnBinDC's picture
JohnBinDC
Posts: 91
Joined: Nov 2010

I completed two rouinds of Cisplation/Gemzar and one round of Al;imta/Cisplatin. The cisplatin has some pretty sevre sidde effects for me, but I have been able to contend with them. I have heard of Cancer Treatment Centers of America. I have heard both pro and con. My treatment is at Johns Hopkins, which is where I got my second opinion. I use Tricare insurance (I am retired military) and I do not believe they will pay for treatments at Cancer Treatment Centers of America. I don't know why and have not asked as I am pleased with Johns Hopkins.

Best wishes always

John

jejohn
Posts: 48
Joined: Nov 2010

Thanks for the info. Helps so much to talk to someone. I am a 47 year old nonsmoking athlete who was hit with this diagnosis last August. I am trying so hard, but it can certainly get you down at times. Have you or do you know anyone who has had their tumor radiated? I cant get much info abt. that. Thank you so much for your time. Im glad you like John Hopskins. Where is that? I live in Alabama.

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dearfoam
Posts: 82
Joined: Apr 2011

We just started radiation on my dad's tumors at UAB's Kirklin Clinic in Birmingham. He has lung and brain tumors. We are stuck in a situation where he only (but thankfully) has Medicare A for inpatient hopsital care and UAB awarded him with charity care insurance until his Medicare B kicks in in July. Have no idea how we'd go about getting a 2nd opinion when we can't go to another hospital. The radiation has had no adverse visible side effects after one week.

jejohn
Posts: 48
Joined: Nov 2010

I live in Montgomery. How do you like your care in Bham? Who is your dr? Is he on chemo as well?

JoanieL
Posts: 13
Joined: Feb 2011

I am sorry to see that you are going through the same as I. I too, have the same Dx's was on Carboplatin, Avastin, Alimta, which was given once every 21 days. I then had a PET Scan the end of Dec. that showed spinal tumor was gone, as the one that was in the middle right lobe of my lung was gone also. The tumor in my femur had reduced some. They decided to start maint. on using Alimta/Avastin. This was done every 21 days, four times now. In Feb. I was having extreme pain start in my leg. The femur produced a second tumor and covered 2/3 or 80% of my femur. I just finished up on Monday with 10 radaition tx's. Last Sat. I woke feeing great, by afternoon I could barely move right arm and shoulder. I presented to the ER with severe pain. A chest ct with contrast was ordered. I right middle lobe pneumonia and a spasming trapezius muscle. Very painful, ER doctor knew I was having a PET Wed. morning and said we would see what that shows. Unfortunately, I have anew tumor in the right lung pushing the nerves. I have not recieved the full report on PET Scan, will get that Monday. I did see the radiation oncologist and he recommends 15-20 radation tx's to right lung. I am awaiting Mon. appointment as they will be switching chemo and he did not know if they would agree to do chemo and radiation at the same time. I just had that my last run as I did both and did fine. They say that the lung is different then the bone thought and is tougher to do both. I had been in severe pain and they have that now covered with meds. I was feeling very much down and at loss over this situation. Now that the pain is in control, I am ready to fight the fight!!! I have seen you post on the radiation and it brought me back to this post, as I am interested in hearing from others also. Are you having radiation on your lung then? Have you had radiation on any bone areas thus far? My personal exp. with radiation has been good. It takes the pain away, and it also attacks the tumor and cancer cells right away. Which reduces intake of pain meds. They say all of my labs are so normal it is ridiculous. I other wise feel great if it were not for pain. Today, I know I am ready to take this on!!! I wish you the best and will be watching for future posts. Sending good vibes your way and stay positive!!!! We need to be! I am 51 years old, and have alot to fight for.
Take Care,
Joanie

jejohn
Posts: 48
Joined: Nov 2010

Soounds like we have a similar sitiuation. I am sorry for your pain. So far, my arm has not hurt me too bad, even when it was broken back in September. I had 10 radiation treatments that went fine. Could not pin the break, but it healed nicely. Still bothers me occasionally, but tylenol works. My lung tumor has not been radiated. Do you know if radiation decreases the chance of the cancer spreading? It seems like it would to me, but my dr. has not prescribed it. He was if my last PET was good which it was not. I wish he would attack this tumor and kill it!! I am only 47 and have a wonderful life that I want to keep living!! Thank you for your good vibes and I send best wishes to you. I am thinking abt. calling my radiation oncologist or looking into Emory or Cancer Treatment Center of America for radiation answers and clinical trial studies. Do you think this is a good idea?

JoanieL
Posts: 13
Joined: Feb 2011

Hi jejohn,
I think we have ditto's for dx's and tx's! I am glad to hear your arm has not been to painful! What a blessing, as we all could do without pain. So the radiation tx's have been to your arm? Glad that broken arm healed well for you. Radiation does control the cancer and decrease tumor for most. It has worked well with my spinal tumor and left femur! It does decrease the chance of spreading, if that is the only thing you have going on. Remember radiaton is pinpointed to one area!
I met with both the chemo onco/radiation onc yesterday for final on my PET scan. I have new mets. One is to my 9th rib and the other is to my pelvis bone, in addition I have that new tumor in my left lung. The first lung tumor was gone in Dec when they did the PET and that was from the first chemo I had. My pain is in control through medication. If not they would have used radiation for pain control and to reduce that one tumor. It is obvious with the new mets we have to get going on the new chemo to get it out there to all sights. As radiation would have only targeted the one in the lung and I would have had to do 20 radiation tx's to lung prior to getting and chemo. The team decided and I agree we do the chemo first. They are going to use Avastin, Carboplatin, and Taxol. They only one I have never had is the Taxol. They say it will be rougher then the first chemo used. I dread the thought of getting sick, but will focus on being well. I only had been sick 2 times with chemo and have had 8 so far. I learned how to stay ahead of it. I only hope to use that knowledge for this and have a good outcome. They will do the first of this chemo Thursday this week and the next will be on the 28th if I do well. Their plan is to do 2 tx's and then a PET Scan to re stage. Radiation will not be used on the lung unless the tumor increases and the pain is out of control. They say radiation on the lung tissue is much different then on the bone areas.
I hear you on having a wonderful life, mine is here too! I am 51, so not to far ahead of you. I think your doc went with the chemo for you due to the mets they found. Also the new chemo should do well with the lung tumor. They say we do not want to use radiation unless we have to. I understood that part in our meeting yesterday. My husband and I were thinking radiation, but to do that would take away 4 weeks of a start on chemo and with mets already occurring, realize they need to be under control firstly, in addition chemo alone took care of the first tumor in the lung.
jejohn, it can not hurt anything at all to make calls to Emory or the Cancer Treatment Center of America. Honestly, when you feel you should, I think you should go with your gut. You may get all the same answers, but you will have peace in what you are doing and going through. I have faith in my team of doctors here, all from the University of Minnesota, and they also have a good reputation. I am thinking of you often and including good thoughts and vibes your way. I do not like this dx's anymore then you do, we need to stay strong, take care of ourselves, stay positive, and when it get rough, get up for the next round. I have chatted with many that have had the same dx's and mets to the bone, some are now celebrating 6 years. I think we focus on the wonderful life we have and live each day to the fullest and enjoy! Peace be with you. I look forward to hearing from you, and how you are doing. Keep me posted. If you want to feel free to leave a message privately and we maybe can exchange email addresses in case we want a more private discussion, and not to post all.
Thanks,
Joanie

jejohn
Posts: 48
Joined: Nov 2010

Sounds like you have alot going on and know alot of information as well. When do you start your new chemo? I had taxotere last Thursday which was supposed to be worse than the carbo with rash side effects. I have just been tired like I was with the carbo. I think Avastin makes me tired as well.I hope things go well for you, and I am so glad for all your wisdom and advice. You have really heard of someone living for 6 years? Even with it spreading? Lets shoot for that long,at least! My email is J92bama@charter.net. It is a beautiful day here in Alabama, and I am about to go watch a friend's daughter play tennis. Looking forward to hearing from you soon.

angelyn's picture
angelyn
Posts: 51
Joined: Jan 2011

Hello all-
Just wondering, and I hope I didn't miss it, do you two have NSCLC or SCLC? Are both of you having recurrant tumors? My mom has recurrant SCLC and has started chemo again which is making her EXTREMELY sick. I hope this time around she can go into remission for the next 20 years!
Angie

phoobear
Posts: 39
Joined: Apr 2011

i am new here but guess this is the place too ask this question. i went too my family dr too get some scripts refilled and he heard me wheezing, so listened too my chest. sent me immediately for a chest x ray. next day nurse called and he wanted cat sccan,breathing test echo car, bone scan , brain scan, and finally pet scan. i was called and he sent me too onco, and he said i had lung cancer along with colon cancer. they did biopsies 6 of them from my lung. i had the port put in, and yesterday i went back too onco, and he said there is a disagreeement and send tests too mayo clinic and they can not come up with a diagnosis. now he wants too send me out of town too a cancer center, and i am scared too death because this has been going on for 6 weeks. if it is cancer i am afraid they are not going too get me started on chemo in time. Has any one ever been through this? he told me yesterday he still goes with this diagnosis that it is lung cancer. by the way everything came back clean except for the lung and pulmonary was not good.i do not know what too do. i am so scared. now here i am with the port in expecting too start chemo, and this is what i was told. i hope some one on here can help me or give me some advice. god blesss each and every one of you. phoobear

jane brindle
Posts: 5
Joined: Mar 2011

Hello to everyone in this thread.

First of all, scared? Absolutely fear is overwhelming, loss of control and not knowing what to do phoobear. I am only 30 post diagnosis; found out through family doctor as well. I have Stage 4 metastatic lung cancer; mets to my brain and adrenals, although I underwent Gamma Knife radiation for the brain and am told that tumor is not longer alive or growing. Within the next 2 weeks of my diagnosis, I started radiation treatments to actually open my left lung. The lung is completely closed from a large tumor.

My diagnosis was the scariest time of my life and not one person told me I would live longer than a month. I spent too much time being scared and barely breathing.

I am coming out of the fog and thanks to chats like these, I see there are fighters, options, second opinions and things to do.

Take each day; think about Cancer but think about other things than Cancer. Embrace your faith, take comfort in family and friends and know that there are no rules......no right or wrong. No one knows what to say to you, or do for you.

We need to take comfort in each other...there are lung cancer survivors and there are miracles. We are they.

Jane

jejohn
Posts: 48
Joined: Nov 2010

Fear of the unknown is the worst. I will tell you that they did not start me on chemo right away because they did a biopsy to see if I had a certatin gene mutation(I did not). My dr. said waiting a few weeks to start chemo did not make that much difference. I was still very anxious. I hope you get answers soon, phoobear. Learn all you can and gear up for the fight. I pray everyday for a cure...

jane brindle
Posts: 5
Joined: Mar 2011

Fear of the Unknown...the worst. I'm happy to hear that you pray everyday for a cure. I was told that I won't get a cure, but my team will help me manage my cancer. OK. Let's manage AND pray for a miracle. I want to be a miracle just like all of us.

grannysb
Posts: 21
Joined: Dec 2010

Amen Jane............Embrace your faith, take comfort in each other, there are miracles.......

jejohn
Posts: 48
Joined: Nov 2010

I have NSCLC. So sorry your Mom is sick. What kind of chemo is she taking? I have one tumor in my lung and several"spots" on my spine. Hoping my new chemo will take them out!

JoanieL
Posts: 13
Joined: Feb 2011

Hi Angie,
I have NSCLC, with mets to the bones. I had 1 lung tumor after my dx's. With my first 4 treatments of chemo that lung tumor was gone. Yes, I have a new tumor to the right lung now. They switched my chemo up to, avastin, carboplatin and taxol. I had the first tx of this on Thursday, April 7th. I am extremely tired, but had only 1 bout feeling nauseated and the anti nausea meds handled that. I was given advice on chat to drink water, water, and more water and that seems to be the ticket. If you can get her to the point she can get something down, get the water and fluids in!!! If she has anti-nausea meds, try to get that on board first. I will have another chemo tx on the 28th of April and some time after that they will do anotherr PET Scan to see how it is working. Thus far, I have no breakthrough in pain so it must be doing something for me. The main thing Angie is her fluids first, then food, if she can get to feeling good, she will have more fight in her. Stay positive and keep faith! I am just keeping the fluids up and sleeping when I feel tired, as I think at times we push to much to stay awake and alert. I wish the best to you and your Mom, as I know this is difficult for both. I was also a caregiver to my Mom 14+ years ago. I know how hard it is to be on both sides of this fight!
Joanie

angelyn's picture
angelyn
Posts: 51
Joined: Jan 2011

Thanks for your advice on the drinking extra water. I will definitely tell her to up the intake on the fluids. We did her second round of chemo last week and she has been very sick this week. They gave her Emend the first session last month, makes me wonder if they gave her it the 2nd go round. She is very depressed and frankly it is getting to me too. All I want to do is sleep. I appreciate you for taking time to give me positive thoughts when I know how tired you get when you are on the chemo merry go round.
Lots of love and good thoughts going your way-
Angie

JoanieL
Posts: 13
Joined: Feb 2011

Hi jejohn. sorry for the delay in getting back to you. I started the new chemo on Thursday April 7th. That is the avastin, carbopalatin and taxol. I am holding up good to it so far! Slight headache and nausea this a.m. and that has past. I have had some very good advice here on the chat line. They say to graze eat, no big meals, and water, water and more water. That seems to be the ticket there.
Yes, I have met people with the same diagnoses and same mets also here on chat. Some are 6+ year survivors, and what an inspiration they are! They have helped me in the recent month get through some rough roads. I think that staying positive is the key, and keeping faith/hope is huge! How did you do with the new chemo? I look forward to hearing how you are doing too!
Joanie

jane brindle
Posts: 5
Joined: Mar 2011

Please keep conversing in this discussion board. I am within 30 days of my cancer diagnosis: Stage 4 lung with mets to the adrenals, and brain. Mine was diagnosed on 3/8/11 because I lost my ability to use my right leg and hand. One brain lesion in the parietal lobe was the culprit. Had Gamma Knife procedure to deaden the tumor; I'm told for now it is dead/ineffective. However, adenocarcinoma of the left lung has completely shut down my left lung. I've had 8 out of 13 direct radiation treatments.

I have had a PET scan but the results given to me were scant...some uptake in the larnyx, spine/back but mostly chest.

I'm so new at this, that I am very scared at times, don't know what to do, yet know that I need to fight, read, live and move forward.

Joanie and jejohn: you both seem so open and positive. You have no idea how you are needed and how in just a few visits to this site have helped me to hear your comments.

I wonder about second, third and 5th opinions. I live on the East Coast...Sloan Kettering, Johns Hopkins, Cancer Treatment Centers....

Any experience or information we all share, the better we can all fight.

Thank you, for being on this network.

Jane

jejohn
Posts: 48
Joined: Nov 2010

Hey! Hope yall are doing well. I am feeling fine, and I had no problems with my new chemo, taxotere. I asked my dr. and it is in the same family as taxol. I asked him lots of questions Friday, and he said he was fine if I wanted a second opinion. He also said with the technology we have today, he would know if there are any new drugs or anything out there that could help me. I feel pretty confident in all he said. It helps to hear what your doctors say so anytime you want to share, please do!!

I had a good weekend visiting with my 20 year old daughter at The University of Alabama. It was parents' weekend, and I was so glad I was up for all the functions. It helps to just get away from everything at times.

Jane, I think being open and positive helps so much. I must admit, though, that after my last PET, I was not in a good place. I had had only good news until then, and it set me back. But I will not give up, and I am praying everyday for a cure and that my new chemo will work. Joanie, your posts about 6 year survivors brought me to tears. I want that to be me!

Hope to hear from yall soon.

JoanieL
Posts: 13
Joined: Feb 2011

Hi jejohn,
It is good to see your post and that your doctor has all the information available to him. I see that you are feeling more confident and that is huge! I thought your chemo was in the same family as my new one and it is. I am glad you enjoyed your weekend with your daughter. The best medicine is still to get out there and get going. Live each day to the fullest. I think we all lived in the fast lane and this took us down a knotch to stop and enjoy life, I know it did for me. I am glad your chemo went well. Mine did too, I am on the water, water and more water and that seems to have been the ticket. I had a few days of being very tired, and I went with what the body was saying and slept. Today is day 5 so I think I have done very well!!! Yippie!!! Tired I can do, sleep through treatment I can do! They say each chemo is better, so maybe next time I will be awake more. I hope so, as we have alot of concert tickets for the first two weekends in May.
I hear what you are saying about the setback with your PET, as mine was the same, and it was a kick in the seat alright, but had to kick myself and get moving again. Not always easy, but my outcome is much better when I stay positive and am ready to fight this. Keep searching the posts, and you will find alot of people at stage IV, that are doing very well, they are my inspirations, and I had the opportunity on chat with one that was 6 years+ on one of my very worst days and he lifted me up. I have not seen you on the chats, do you go on it at all? It seems that this week alot of people are waiting for results on PET's and CT's, in the same situation as we just have had. I find it nice to share there and people share in struggles too, and support one another. I know that with just going through it, I have a good ear where they are coming from. I also want to be 6+ years and more! I think time goes fast and staying positive and healthy, we can fight this! I plan to give it my all and more!
I am keeping you in my thoughts and prayers each day! I think that it is important to share what we can to make this fight easier and have support from those that are surviovors!!! I remember what my thoughts were years ago about treatment, and have learned firsthanded you do not know what you would really do until you have to come face to face with this dx's. You quickly learn never to say never! I just had a new baby grand daughter born on the 3rd. That was the first goal set last fall, and now that she is here and beautiful, I will have to set new goals to watch her grow into Ms Personality!!! I do not want to miss any of her first's! Take Care
Joanie

jejohn
Posts: 48
Joined: Nov 2010

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jejohn
Posts: 48
Joined: Nov 2010

So glad your treatment went well. I agree that water helps. My next treatment is April 21. I have a Zometa treatment April 18. Do you get those? They are for your bones. How long ago ws your dx? Mine was in August.
Are you on Facebook? It is a good way to keep in touch. I really enjoy it. Let me know if you are and if you are not, check it out! Would love to see pics of your grandchild.
I havent been on chat much. Will try to do that soon. Thinking and praying!!!
Talk to you soon!

jejohn
Posts: 48
Joined: Nov 2010

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jejohn
Posts: 48
Joined: Nov 2010

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jejohn
Posts: 48
Joined: Nov 2010

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jane brindle
Posts: 5
Joined: Mar 2011

Hi there jejohn, Joanie and everyone.

I was having a pity moment just now and logged on, started reading and immediately felt like I was part of a bigger, more positive group. Wow! The power of sameness and likeness!

I will be starting Chemo for the first time at the end of April, so I am very anxious and scared but listening to you guys makes me hopeful that if I pay attention to your experiences that I can minimize the bad stuff that I can't fully comprehend yet.

Also, what's been said about the CTs and PETs scans...right on the money. It's like I'm just waiting for bad news when I should be channeling my energies into positive fighting.

It is Spring Time in Pennsylvania, although our weather is somewhat bipolar: 75 and sunny one day, 45 and raining the next hour!

Thanks guys and I will talk to you all later.

JoanieL
Posts: 13
Joined: Feb 2011

Hi Jane,
I am glad you found us here! I think that the group of support and experiences help one get through alot of this! Have they told you yet what tx of chemo they will be using? The day before tx eat and drink as much as you can. The morning of tx do the same, eat and fluids. They say those that eat a big breakfast the day of tx do much better. Remember firstly to keep your fluids up. I find it to be much better to graze eat after tx for a few days. My first tx I will be honest here, I did very well and thought I had it beat, well days 3-6 after tx I was very sick. It was the 1st tx and I had to go to the ER for fluids, as I dehydrated. It never happened again I will tell you. I made sure that I took anti nausea meds with the first onset of sypmtoms after that. We all learn as we go what works better for us.
Yes, waiting for PETs and CTs certainly can be a rough time. One just needs to stay busy and time will go faster. I know this last one I had, I could feel changes b4 they found them. It was not at all a good feeling, as I needed to know what I had going on and what to do, but part of me just did not want to hear it either!
My daughter is coming with my new grand daughter (10 days old) to visit today. I am so excited to spend the day with them!
Your weather there seems like here, but we have you beat, rained all morning so far, gloomy and cold after being in the low 70's and are expecting a foot of snow, so they say by Fri. Yuck!!!
What day is your chemo scheduled for? My next one is on the 28th, so looks like they will be close to your schedule. Do you know how many days of tx you will be getting? I have a tx every 21 days. After this next one, I have another PET Scan. I am visualizing binding up the cancer cells and releasing them from the body and growing good healthy cells to ward off cancer cells. I am looking for the miracle too! Keep on fighting, stay positive, and do not let this dx's rule your life! Live it to the fullest, take care of yourself, turn your worries over, and let the skilled medical team take care of the needed tx. Our job is to stay positive and healthy! Have a great day!
Joanie

jejohn
Posts: 48
Joined: Nov 2010

Hey JoanieL!
Enjoy that new grandbaby! How exciting! Is this your only one? I have 2 kids,24 and 20. Neither married. Hope your day is wonderful!!!

JoanieL
Posts: 13
Joined: Feb 2011

Hi jejohn,
Thank You on my new grandbaby! I actually have 5 grandchildren now. The oldest is 11-1/2 years, and the youngest is just 11 days old. The youngest I had till this one was born is going to be 9 years old in May, so have not had a baby around in years. These are my 2 oldest children that have the kids. My other three children are 23, 18, and almost 17. Also, I am not on FB and do not know if I will, I have so many other activities I do not know I can add that in too. Maybe sometime, just do not know right now.
Have a super night!
JoanieL

jejohn
Posts: 48
Joined: Nov 2010

Hey Jane! My computer went a little crazy with all those posts. Annoying, Im sure. Sorry about that!
Hope your first treatment goes well. They gave me my first chemo very slowly so they could see how I would react. The anti nausea meds really worked, and the decadron, steroids, helped as well. I did not have any trouble and hope the same for you. I did not even lose my hair with my first round! It is getting mighty thin with my new chemo,taxotere. I might be wig shopping after all. Most of the time I like to go by myself to chemo. My family always objects, but I use the time to read, write thank yous and letters, and listen to my ipod. I never nap for fear of snoring or sleeping with my mouth open!!! I always reward myself afterwards by going to my favorite hamburger place and getting a burger, fries, and shake. I figure I deserve it!!!
The weather here in Alabama is great. My husband and I are going to the beach tomorrow for a few days. Our 26th anniversary is next week. The beautiful Gulf of Mexico is less than 3 hours from our house.
Are you on facebook? It is a good way to keep in touch.
Hope to hear from you soon.

phoobear
Posts: 39
Joined: Apr 2011

thanks everyone. you all are the greatest people. your faith has made me realize how much i have too be thankful for. go too onco today too find out what we do now. if he can not give me any thing too go on today other than there are disagreements as too where i have lung cancer or not. i am going too get another opinion as soon as i can get into emory. has anyone ever heard of markey cancer center in lexington ky. it is part of uk medical teaching hospital? thanks again and god bless each and everyone of us.

phoobear
Posts: 39
Joined: Apr 2011

just wanted too let every one know i did go too the onco today, and i do have lung cancer. i am sure all you brave and couragous people on here know what i am going through right now. i start chemo, and radiation this friday. at least we are going too do something before it gets a head start on me. i am scared of course, and i have cried a lot. i watched my mother pass away with this cancer. she found out too late. i hope i can be as brave as all of you are on here. i do have a lot of faith in god, so with that and you guys this should sustain me. love and prayers too every one.

JoanieL
Posts: 13
Joined: Feb 2011

Hi Phoobear, I am sorry to hear that your dx's was confirmed! I do honestly know what you are going through, and the rollercoaster of emotions that come right along with it. I am glad to hear they are going to get your tx going this week, no reason to waste time. I am sure you are scared and trying to absorb all the news and what is next. Can be very taxing. My mother also had this cancer and passed 14 years ago, and I was her caregiver. I can tell you the tx's have certainly change over the years. If I went by what she went through or how she did, I would send myself over the edge. So, I let go of that right away. Also each person is so different in how they manage and cope. Stay strong and positive as #1. Remember to start loading on your fluids and nutrition starting now. Also the morning of chemo, have a good breakfast and plenty of fluids. Make sure after tx you stay up on your fluids firstly and graze eat, small amounts frequently. If you are tired make sure you drink fluids, set timer or have someone wake you every couple of hours to drink fluids. I say if you can get your fluids and nutrition, sleep through the sleepy moments, keeps nausea away. Keep us posted and when you can join chat or leave message on the board. I will be keeping you in thought and prayers in addition. We are in it to WIN it! Did they say which chemos you will be using? When they do the tx, visualize the cancer cells coming together,and tell them to get out! See your tx working on them cells and prayer for healthy new cell growth to take its place. Take Care and keep in touch!
JoanieL

phoobear
Posts: 39
Joined: Apr 2011

hi joaniel, thank so much for the encouragement you gave me. it mades me feel so much better and gives me hope i can do this. i had my first chemo treatment yesterday,friday. i was there 7 and 1/2 hours. totally exhausted. i am taking taxol/ carbo. is this what most people take? monday i start rad. i took my sister every day for 31 days for this, so i do remember it did not take very long after all the waiting. i did not eat or drink the morning of chemo or take my medications. did not know what i was suppossed too do. i am trying too stay positive. i feel like you do. if i had too go through what my sweet mamma did, i could not do it. i am drinking as much water and juices as i can possibly hold. Does oj and tj help. i am trying too eat healthy as well. I have been weak today, but just rested. expect too start feeling a lot better in a day or so. one thing i wanted too ask did they give you steroids along with your chemo, as well as benadryl, and a couple of other things. i wonder why everyone does not take rad as well. again thanks too you and everyone on here for there encouragement. when it comes down too it we have our loving families, and they think they understand, but i do not think anyone knows what we are really going through, except for all of us. i am so glad i have each and every one of you. i will keep you posted god bless and be with us all. phoobear

jejohn
Posts: 48
Joined: Nov 2010

Hey! Just wondering how you are doing. Hope you are feeling good!

JoanieL
Posts: 13
Joined: Feb 2011

Hi Phoobear,
Glad to hear that your first chemo is done. How are are you doing? Remember Water, Water and more Water! I do not know how OJ and TJ will do for you, for me it is too much acid. Darn it, they did not tell you to eat a big breakfast and take your meds before hand. It makes a big difference. I know it does for me and then I make sure first that I keep my fluids up and graze eat. It keeps the stomach calm for me. I did not start with taxol/carbo but am recieving that now along with avastin now. Yes, I do get steroids and benadryl with chemo. They also have me take oral steroids the night before chemo after I eat supper and again in the morning with breakfast. People react to rads differently in part of the location they are being treated, also it is skin coloring etc...that makes a difference on burns. My rads have been on two bone locations, which they say is not as hard as organ, soft tissue areas. Where is the location you will rec rads? How many rad tx's are you having? Remember with radiation not to use lotions before hand, and ask what kind you can use after they tx. That was a hard habit for me to break as I always use lotion. I remember one day taking a shower and automatically lotioning up. My hubbie said well just wash it off. I was not comfortable doing that, so jumped back in the shower to make sure it was all off. I also always like to do the bath and body shower jels and made sure not to use those during radiation. They told me only to use dove or ivory soap also. I always use dove so that was not an issue. I was very tired for the 1st four days after chemo. So this is day 3 for you. I hope this finds you doing well!!! Mine was on the 7th and next one is the 28th. I am feeling great in the last week. I hope it goes as well for you as it has for me. I look forward to your reply. I will keep you in thoughts and prayers! Take Care
Joanie

sleepless in jersey
Posts: 185
Joined: Feb 2011

Hi Jane~ My Mom was DX on Jan.3, 2011 the day we will never forget...
She has stage 4 adenocarcinoma, lung, spine, brain and pelvis she is 60yrs young. She had brain surg. and than came home. We had her set-up at the cancer center in philly, however she said NO when on that fri. they called her house and cell 9 times that she felt like it was all on commission and no longer wanted to go there so I got her an appt. at Sloan Kettering. I worked my tail off to get everything that they said they needed in order for them to see her in 2 days. We got the opinion and they were amazing...they have there own pathologists right there so while were going through the process of filling paper work out or being examined there pathologist are looking at her slides to confirm etc.
Well he explained everything in detail and gave us papers on the chemos and what to expect.
He said for her to go on carboplatin/alimta and zameta IV every cpl of weeks and b12 inject. every cpl of weeks where the Onc in Jersey wanted cisplatin and everything else (cisplatin is harsh on the liver). He also said to have WBR for the 10-15 days, but her insurance will only pain for 10 so that what she got.

A letter was sent to her Onc and she made the change and so far doing well...
She just finished her 4th tx of chemo and sched. for scans on the 26th WE WILL CONTINUE TO PRAY! You really should get a 2nd opinion and have any pathology sent out for gene mutation. Lots of thoughts your way...Sleepless in jersey

jejohn
Posts: 48
Joined: Nov 2010

Good morning everyone! Hope you are having a great week! Going for round 2 of taxotere today. Hope it will go as smooth as last time. Praying for you all!!

phoobear
Posts: 39
Joined: Apr 2011

hi everybody, wanted too let everyone know how things are going. i take my 2nd treatment of chemo in the morning. hope things go well and i think they will. taking advice on drinking and eating. the only thing is they are going too mark the places tomorrow, for rad. the doc said not too eat 4 hours prior too this procedure. i think they said they will use a cat scan too do this, so that might be why they said not too eat or drink. my chemo starts at 9:30 and the other at 4:30. i have too take 38 treatments of rad. seems like a lot too me but i guess it is not. you all have helped me so much, getting my mind conditioned and etc. i thank god for this site, and each and every one of you. will keep you posted on how it goes. hugs and prayers too us all phoobear

JoanieL
Posts: 13
Joined: Feb 2011

I am glad to see your post I have been wondering how you were doing. I wish you the best as you prepare for your 2nd tx. Luckily, for you the timing works out that you can have breakfast and some lunch. In addition, you will get some added fluids during your tx. I always have them run the rest of the saline bag in for the extra fluids, they do not always like taking the extra time, but the fact of the matter is all the fluids you can have help. I figure, I am paying for the full bag, why not use it? Keep us posted on how you are doing. Thoughts and prayers are coming your way!
Joanie

DianaJ
Posts: 15
Joined: Mar 2011

Thanks for the advice about drinking large amounts of water before and during the chemo. I got my first IV infusion of taxol/carboplatin on April 21 and with the premeds and fluids, it went well. I am still drinking copious amounts of water and hoping this will stave off the nausea. Day 3 started with joint and muscle pain, but that has eased a bit on day 4.
I have stage 4 nsclc Squamous; with large 8cm tumor in LLL and mets to pelvic bone and adrenal as well as chest nodes. I've had 10 of 15 Tx radiation to the pelvic bone lesion and got one XGEVA shot two weeks ago (adverse reaction which caused pain and nausea which lasted 36 hrs. and an emergency room visit). Thanks for all the details for TX and how to cope.

JoanieL
Posts: 13
Joined: Feb 2011

Good Morning jejohn,
Thank You, and I hope your having a good week too! I hope you you have a smooth tx too. I go for the 2nd one on the 28th. I may say it makes me tired, but that is tolerable. Sending good thoughts and prayers your way!
Joanie

jejohn
Posts: 48
Joined: Nov 2010

Second treatment going well so far. Walked a 5K race this morning with my family. Proud of our 43 min. time!! Just praying the chemo is doing its job. Brain MRI on Monday. Very concerned, but hopeful. Have a good Easter!! Hope you have a good weekend!

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

Keep up that activity.... Cant hurt, can only help. Good luck on Monday.

phoobear
Posts: 39
Joined: Apr 2011

hi all, i keep check on everybody, but have been so tired i can hardly do anything else. i have had 4 chemo treatments now, and 4 rads. my throat is getting a little sore as well. i am not sick but just do not want anything too eat. i have a terrible rash all over my feet, arms, and legs. they are larege and purple and scab over. burn really bad. my hair is all most gone now, which is a minor thing if i can get well. i am having a memory problem. i will be thinking of one thing and before long some other thought takes it over totally unrelated, but very frustrating. when i feel my self getting depressed i read about all you brave and couragous friends i have made on here. will keep you posted. has anyone ever had any of these problems with there skin and memory? god bless each and every one of us. phoobear

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