Hi Friends: Just found out yesterday I don't qualify for Keytruda. I have been given two choices. Try another chemotherapy medicine (name above) or accept fact that it is time to say adios. Doctor said it much nicer. I hated last chemotherapy as it ruined my quality of life. So that is why I am hesitant about chemo. My breathing is lots worse. In pain most time. My days are spent watching TV and reading. I find out end of month if I still have a brain tumor or if it is just scar tissue. If it is a brain tumor, no options as already had radiation on it. I keep praying for guidance but as of now no answer. My husband doesn't want to let me go and doesn't believe in God. Does anyone know about this Chemo drug? Any help would be appreciated. God bless.
Gemzar/Gemcitabine--Any Information? - Lung Cancer Support
Gemzar/Gemcitabine--Any Information?
Marymac4441 hi I,m sorry for what your going thru. You have a guardian Angel who walks beside you. She's been there your whole life looking out for you. I had stage3 lung cancer it was in my lypmnodes. They told me I was dying. I fought and I have faith and hope...October of this year I am 5 years cancer free. All I can say to you is believe have faith and hope and fight Don,t ever give up fight. I would like to hear from you again if you. Need to talk or rant and and cry I,m here. susiejo1948
I don’t know anything about your new drug, but you have to try
Mary, ultimately it's your decision, yes chemo is bad but I was told by my doctor 2 years later, I was bad and he thought 6 months maybe. But he never told me he kept fighting with me. It's now 2 1/2 years and kept me stable. It wasn't easy side effects suck but I am still here fighting the fight. I am not ready and my doctor says he still has stuff in his pocket. I truly hope you can find a doctor that can fight with you. Always worry about scans and results but everyday I get up is a blessing. My husband helps me with meds ,getting dressed, cooking, cleaning. I still work it keeps me moving.....🌷
Thanks. I'm not strong enough to work anymore. That is part of the bummer
I’m going to be facing a similar decision soon. On my 3rd line of therapy (targeted) and will find out next month if it’s still working. I will have been on it 3yrs so I had a good run on it. I’m being told Gemzar or Taxol may be my next options, possibly Opdivo. Why aren’t you being offered Opdivo. I’m PD-1 negative, so I’m not a candidate for Keytruda either, but that’s not required for Opdivo. My quality of life is similar to yours and it gets old fast. My oxygen demand is so high there really isnt equipment to adequately support trips outside my home and my level of activity is limited. And my husband would rather have me here even if it’s sitting in a chair reading and watching TV all day. I don’t feel bad, I just can’t breath and have no energy and get bored! Not ready to cash in quite yet but not sure how long I’m willing to cope with this level of life quality.
I certainly have a good idea what you’re dealing with and hope a clear sense of direction comes to you. Although I’m not dealing with pain or a brain tumor and am so sorry you have that to contend with also. I do understand that of the two agents I’ve been offered, Gemzar is generally better tolerated. I have pretty bad neuropathy and Taxol is notorious for that. Of course, hair loss, nausea & vomiting are also side effects of both - not much to do about hair loss but the N &V should be adequately controlled with a number of available drugs. I’m really not wild about the infusion schedule of 2 wks on 1 off and the idea of feeling so sick and fatigued. I guess we’ll both see. Best wishes.
Msp1,
Was just wondering why your oxygen demand is so high.
I am on oxygen and it seems like none of my doctors can tell me why. I had blood clots in lungs back in September. Felt wonderful mid October to mid November then all of a sudden I am struggling with my breathing. Tests show no new blood clots. And no one can give me a definitive reason.
I also have some mild COPD and pulmonary fibrosis - scarring; probably from cancer and multiple bouts of pneumonia. My cancer is Stage IV and has progressed on and off for over 9 yrs - it just is what it does! I don’t have much lung function left. Have you point blank asked your Oncologist? Hope you get some good answers - might not be what you want to hear but knowing is always better!
Thanks for the information. I wish you the best. If my husband would spend more time with me, I could understand why he wants me to keep fighting. But most of day he is downstairs on computer playing games while I'm upstairs watching TV - doesn't make sense to me. I too hate idea of schedule of drugs..mostly with winter weather coming. I will keep praying for guidance. Thanks again for input.
Funny, my husband does the same. Says TV is too loud for him so he buries himself in his man cave playing games etc. Frankly, I think he just gets comfort knowing I’m here. It’s the contentment with familiarity.
Mary, I can only assure you that my thoughts and prayers are with you. God bless you and your husband.
Dear Marymac,
My only experience with gemzar is anecdotal. One of the members in a cancer support group was on it and he did not find it intolerable. In the end, only you can decide if the side effects are too disruptive to your quality of life. I am sorry that your husband is not on board with you and is not a believer in our Savior. That just makes life more difficult. This journey is difficult enough as it is. Talk to your oncologist about what you are willing to tolerate and not tolerate, and take it from there. Prayers said for you.
Lauri-Anne
Hi Marymac,
Sometimes when you have put up a fight, you just feel what's the point.
Yes you have everyone around you.... but you know your fight... you know your strength....
I am 44, my hubby passed 5 months ago, it's been a difficult journey... we were both young and sadly this disease changed both of our journeys...
But hand on heart, he did fight all the way to the end.
He was still walking to the toilet, the night before.
He did take keytruda, but it did not change anything...
However not every 2 people are the same.
After his first rounds of chemo, then radio, then immunotherapy... nothing was in his favour, he was offered chemo again...
I thank god, we did not want to go down that route again, as he was really weak...
But still able to walk, talk, eat and drink...
If he had the next round of chemo, the dr said
He would not be able to walk, eat or drink as the side effects would be too severe...
Hope you make the right decision.
Praying for you, with all my heart, to both of you.
Mary,
My heart goes out to you. I will have a similar choice to make someday, and it will likely be even harder for my family than for me.
I believe that your doctor is offering you the treatment choice that he/she believes will give you the highest quality of life among the choices available. Gemzar has a reputation for being gentler on the body than the taxols, and some people have a good response to it.
You won't hear "you gotta fight" from me. Sending you wishes for comfort and peace of mind as you make your decision.
I am so sorry that you are in this position. You are facing a decision that many of us will have to face at some time. The decision as to what you are willing to do and what side effects you are willing to put up with is yours alone to make. I'm sorry that I have no knowledge of the drugs being offered, so cannot help in that manner.
My primary physician has placed me on low dose Naltrexone (LDN) . He is using it himself for prostate cancer and says it works by helping the body's immune system recognise and differentiate between you and anything that is foreign so the bodywork attacks a foreign substance and not itself. I like the concept, but don't know if it will do anything. He is having a good response with the only side effect of vivid dreams and some sleep disturbance. These I, too have noticed. It's only been a week, so don't have any more experiences to report.
When my primary doc told my oncologist about doing this, I can just see him shaking his head and saying, bit there have been no double blind studies to show this works. My oncologist is very traditional in his thinking and my primary doc more open minded.
Well, I don't feel I have much to lose except some money if it doesn't work. I'm in a holding pattern until the next scan in February anyway, so thought it is worth a try.
Like Anita I send you wishes for comfort and peace of mind as well as prayers and hugs as you make your decision.
Jean
Hi Marymac.
My first occurrence - 2009 - I had two lobes of my right lung removed, followed by cisplatin and gemcitabin. It was difficult for sure, but I did not need additional help at home and could manage things on my own - though I couldn't work for a couple of months. I was 49 years old. I went 6 years 'cancer free'. I had a second occurrence in 2015/16 and was treated with daily radiation and chemotherapy with cisplatin and etoposide. It was difficult to tell what side effects were from the drugs and what were from the daily radiation but it was much more difficult than my first treatment. I live alone and my sister needed to come in for several days at a time to help me.
It's so hard to know what to do and when you decide that enough is enough. After the second occurrence, I had multiple conflicting opinions. I was able to reach out to my first oncologist - he had relocated out of state - to ask his opinion. When he gave it to me it was the same as my current medical oncologist and i immediately relaxed and knew it was the right choice FOR ME. The decision you make has to feel right FOR YOU. Treatment is difficult enough as it is without having to second guess why you're going through it. I reminded myself often that these side effects were hopefully temporary.
All my best thoughts are with you, Marymac. If you have more specific questions about my experience with gemcitbin or my treatment please reach out. (I have also done clinical trials for Tarceva, and the lung cancer vaccine. I am currently being treated with Nivolumab - which I understand just went to a first choice option in September.)
Darcy
Have you or anyone else ever heard of the Enveeta clinic in Arizona. They treat the whole cancer. Look it up and read what they do. Just another option maybe?
Maybe I can help. I have stage IV non-small cell lung cancer, mets to lymph nodes and liver, diagnosed Feb 2015. I did 6 cycles of Cisplatin and Gemzar in combination. I did both drugs 1st week, just Gemzar second week, off third week for a cycle. First 2 cycles weren't bad, 3rd one hit hard. Mostly fatigue and nauseous. I did take supplements to counter effects. I was very weak by the end, but have been able to recover. I started on Opdivo after 4 weeks rest. It has been very good the past 28 months. I was initially given 3-6 months, it's now been almost 3 Yrs, just a few months were really rough in the middle. I would consider going back on Gemzar if needed. Right now I am doing high dose radiation over 10 days to see if we can get a better/extended benefit from opdivo. I would ask to see if Opdivo would be an option, if not Gemzar is not too bad. If you haven't read "Radical Remission" that may give you some guidance with or without chemo. If you need more info, please message me.
Mary,
I will pray that you are able to make a decision you are at peace with as you move forward. I hope your prayers bring you comfort and help you to choose a direction. As you know only too well, only you can decide what is the best next step for you after listening closely to your doctor and spending time in quiet consideration. Your way is the only way for you. Please trust yourself, listen to what you need. Please keep talking to us, we care deeply about you.
I’m sorry to hear you’re not doing well and that your husband does not have faith in God. Cancer is a disease that writes it’s own rules and sad to say, we have to accept them.
You are the only person who can decide what is best for you. If you have faith in God, pray and ask for discernment.
May God strengthen you and give you His peace that passes understanding.
I am a survivor of NSCLC stage 4 ,w recurrent brain tumor,( since Feb 2012) 1st time ,a crainiotomy w brain tumor removal following w Cyberknife). It’s been a yr after the 2nd Cyberknife on my brain, the specialists still don’t know whether it’s the tumor or inflammatory reaction or the scar tissue? I’m still on Tarceva 75 mg ( started 150 mg X 3 yr to 100mg till last Nov) . It’s the waiting game every 3 monthly to check MRI brain & CT chest, abd & pelvis.
The worst part was taking Decadron for a long time(2 m) for the brain edema.
I hope you have the decision to make for yourself Marymc4441. I am sorry for you go through .Think about the love and quality of life. Prayers w you throughout this journey. God bless!
I have no knowledge of this drug. It"s certainly a tough decision. I wish you bright moments and peaceful days. I hope someone here has more to offer