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  2. LexieCat

    Chemotherapy or not

    Hi, MVin, and welcome. I'm sorry to hear about your dad's diagnosis--this stuff is always upsetting for everyone involved. First of all, doctors cannot predict how long someone will live--nor can they make more than a well-educated guess, most of the time, as to how any particular person will respond to treatment. We have some long-term Stage IV survivors here. Have they tested the tumor for genetic markers to see whether targeted therapy might be effective? Some people also have done well on immunotherapy (with or without chemo) and/or radiation. If your dad isn't being treated at a major cancer center, a second opinion from a place like that might be worthwhile. Does your dad have other health problems? Sixty-eight isn't that old--many people that age are able to tolerate treatment. (I'm 62, and 68 is looking younger to me every day!) There are times when it really does make sense to forego treatment. But if he has JUST been diagnosed, there might not be enough information yet to make a truly informed decision about it. And you haven't mentioned how your dad feels about the situation. The cancer might not be curable, but maybe it's treatable in a way that would give him significantly more time with good quality of life.
  3. Today
  4. MVin

    Chemotherapy or not

    My dad (68 years old, 41 kg weight) has been diagnosed with Metastatic Adenocarcinoma of the lung (stage 4) as per the biopsy. The PET CT shows that it has spread to the liver, bone and lymph nodes. The oncologist here has suggested that we start chemotherapy (Pemetrexed + Carboplatin) right away. Once every 3 weeks - 6 cycles to start off with. We are extremely worried about quality of life, and unsure what to do. Dad has breathlessness, cough and pain. The palliative care expert has put him on Morphine and other medicines to keep him comfortable. I would be extremely grateful if you could tell us what you think we should do please. Our goal, is to keep him comfortable and have a decent quality of life. But when the oncologist tells you that its 4-5 months without chemotherapy and 7-9 months with chemotherapy; one is completely thrown off! One week has changed our lives forever. Shattered :(
  5. Yesterday
  6. SCheryl

    Info on MD Anderson

    Thank you Lexie and Tom. I look forward to what they can tell us.
  7. Tom Galli

    Info on MD Anderson

    SCheryl, Welcome here. I don't have first hand experience with MD Anderson but know about a dozen Texas cancer survivors who do. Here is what I've gleaned of their experience. Expect several weeks of delay in securing your initial appointment. One I knew waited more than a month to get admitted. Most wait a couple of weeks. On arrival, expect a full battery of tests, many that may be repeat tests your husband's already had. MD Anderson is a team of closely collaborating doctors and treatment teams prefer Anderson radiology methods, practices and interpretations. Plan for a longer stay then forecasted. Those I know were given 3 day projections for their initial stay. More than half stayed as long as 5 days. MD Anderson has a very good reputation and it is earned so I'd expect practice excellence. But, it is a very large hospital with lots of moving parts so sometimes, the ball gets dropped. My best suggestion is to be with your husband as he goes through the screening diagnostics and take notes during doctor consultations. Note the name of each doctor, nurse and technician that interacts with your husband and record what they tell you. That will help you quickly circle back if the staff fails to deliver as they said they would. Here is information on affordable lodging for family. Stay the course. Tom
  8. LexieCat

    Info on MD Anderson

    Hi, SCheryl, I'm sorry, but I'm not familiar with the practices in Houston--I think there are a couple folks here who have been there (Susan and Tom, I think, though I could be mistaken). I just wanted to say I was VERY happy with my treatment at the local MD Anderson-affiliated cancer center here, and the one in Houston is rated number one in the country. I'm sure he will be in good hands.
  9. SCheryl

    Info on MD Anderson

    Hi! Our oncologist has referred us to MD Anderson. My husband is Stage IV. He has gone through a Chemo combo and radiation, then was placed on Immunotherapy that is not working. Can anyone share with me their experience with MD Anderson? What do they do when you arrive? They have requested we be there a few days, but don't have any more info on what tests or treatments they perform for new patients.
  10. Judy M.

    Cisplatin/Alimta Experiences?

    PHi Not in my 40's but had 4 rounds of Cisplatin/Alimta. With the steroids and the many bags of fluid they gave me each round I looked like the Pillsbury Doughboy right after infusion. By the second one my face and eyes were even swollen. This gradually went away. Had nausea the evening after. Learned that peppermint candy worked as well or better than the pain meds for that. Had constipation and food issues. Food tasted really nasty. Peppermint, lemon, and ice cream tasted pretty good. Also donuts. So I wasn:t a healthy eater. But I didn't lose weight thanks to the steroids. The only other thing I can think of is that infusion was very long. It took 7 hours. And as you'll read elsewhere here your best bet is to keep a record of your symptoms the first time and have a plan to deal with them because they'll be the same at about the same time each infusion. By the last one I was very tired and had drenching night sweats. I lost about 1/3 of my hair and the texture became very fine. Continued to lose it for a while afterward. So everyone is different but that was my experience. If you bring each symptom here to the forum you'll get good suggestions on ways to deal with it. Hope it goes well for you and destroys the little evil cancer critters. Judy M
  11. LaurenH

    Don Fredal

    I was diagnosed with Stage IV lung cancer in September 2014. Like many people, my diagnosis came as a huge surprise to me and my family. A friend told us about the Breathe Deep Kansas City Walk that was happening in our area. We called our team The Village People because we like to say, “It takes a village” to fight this thing. The Breathe Deep walks provide an opportunity to raise awareness and money in your own community. It’s very powerful. I attended my first National HOPE Summit in Washington, D.C. in 2015. Lung cancer is so isolating and overwhelming. Then you get there and meet other survivors and caregivers and experts. I feel like I always leave HOPE Summit with 150 new friends and then I don’t feel so lonely when I get home. The next year my wife and I attended the 2016 Hope Summit together, she finally understood how these friends I had been talking about for the last year could be so intertwined with my health and healing. We made even more friends and keep in touch all year long through social media and other events around the country. Once you get to HOPE Summit, it’s so empowering that you want to get involved. I found out about the LifeLine Support Partner program at HOPE Summit. LifeLine is nice because you can work remotely and there’s an opportunity to give back. My mentor, Matt Ellefson, is one of those people who LF relies on to have multiple mentees and he was very inspirational for me because of our similarities and what we’ve been through. It was a very good fit. LUNGevity tries to match people based on age, gender, diagnosis and geographic location. It’s always felt very comfortable. I’ve had mentees assigned to me and we usually have a really good talk and maybe hear from them once or twice and that’s all they need at that time. We talk on an as needed basis. Hopefully, I’m encouraging people depending on where they are. A lot of the time, the person is newly diagnosed and it’s very fresh with them. As a mentor, you have to put yourself back in that frame of mind. It’s important to remember that you’re not there to fix their situation. You’re there to listen to what they need and let the conversation evolve. The most rewarding thing about being a volunteer is being able to help someone else by sharing my experiences and the ups and downs that I’ve had. If I give any advice it’s always to find a specialist who is an expert when it comes to your diagnosis type or mutation. It’s so important to be very confident in your medical team. Don’t be afraid to get a second opinion. If your doctor isn’t jiving with you, keep looking. It just feels good to help somebody through this because as we all say, it’s really hard for other people who haven’t gone through it to understand. When I was diagnosed, I was given 9-18 months. I’m coming up on 3 years and 11 months and my wife and I are going out to Los Angeles next month for the Stand Up for Cancer telecast on my 4th Cancerversary. I hope that my efforts as a LifeLine volunteer will inspire the people I mentor to do the same for others. I’m a big believer in paying it forward. It’s a big world and there are a lot of people affected by this disease.
  12. Tom Galli

    Cisplatin/Alimta Experiences?

    Eullrich66, Welcome here. I didn't have your recipe but one the lung cancer community commonly has --- Taxol and Carboplatin. Here is a summary of my chemotherapy experience. I had my first chemotherapy infusion at age 53. While not 40, I was very active. My first series of infusions were adjuvant therapy in combination with conventional radiation. The only discomfort I experienced during the adjuvant therapy was the drama of finding a vein. But, I endured twelve infusions after surgery and they were the full strength variety. Each was administered in a three-week cycle and I had about 3 very bad side effect days in that 21 day cycle. Of course, I lost my hair and experienced nausea, but I also had extreme joint pain and neuropathy in the hands and feet. I am still bothered by burning toes (Taxol toes) and loss of sensations in my fingers. But, these infusions kept me alive till treatment emerged out of research and that treatment, a form of precision radiation, resulted in me achieving no evidence of disease or NED. I've survived nearly 15 years since diagnosis and have been NED for 12 of those years. So for me, the downside of chemotherapy is not as weighty as the upside. I'm sure more folks will chime in with their Cisplatin and Altima experience shortly. Questions? This is the place. Stay the course. Tom
  13. DrBee

    New and scared

    Hi Jenah and welcome to this very supportive, inspiring and wise club - of which no one wants to be a part. I am also new; my husband (49, never smoker) was diagnosed stage iv NSCLC adenocarcinoma at the end of July (3 days before our first wedding anniversary, incidentally). This forum - both being able to vent here, and the amazing and inspiring survivors, including very longterm ones - are probably the only reason I got to sleep some of those first nights when I couldn't stop crying, my hubby couldn't stop coughing, and we didn't even know how we'd make it to the first chemo session. We found out 4 days later he is ALK+, so I shifted more of my online interaction to the ALK Positive FB group, but I keep coming back here to check in with folks and because so much of the wisdom here is applicable across a broad range of types/stages of LC. I am sure you are googling KRAS like crazy, so don't need me to tell you this or send you this link, but there are really exciting things happening right now with the development of KRAS-specific targetted therapies (see for instance https://directorsblog.nih.gov/2018/02/13/kras-targeted-cancer-strategy-shows-early-promise/) So you may have more options, soon. Hopefully radiation will take care of this for now, and then if and when you need them, those KRAS specific drugs will mean whole different treatment options - and prognosis - for you. I am so glad you found us. Please keep us posted and know we all are holding you in our thoughts. You can do this!
  14. Robert Macaulay

    Cisplatin/Alimta Experiences?

    Never had that combo but had Cisplatin combo. You will know within fifteen minutes if you can handle the initial infusion and any problems or concerns and they will stop. Drink lots and lots of water prior to all your infusions that is a must.The side effects if any for each individual is different will usually start around forty eight hours after you completed l your infusions and is pretty accurate for everybody. If you complete your initial one and your blood work is good after that your good to go number 2 and so on. I found the first six piece cake of the eight total but the last two full dose forty eight hours on schedule the fatique set in not much fun but all part of the process of all Chemo Everybody has different side effects and they will cancel till the person feels better if they are real bad. Bob
  15. Susan Cornett

    Cisplatin/Alimta Experiences?

    Hi. Hopefully I can shed a little light on this combo for you. I had four rounds of this combo when I was 47 - never lost my hair. I had nausea, tinnitus, and neuropathy in my feet. I took my chemo on Fridays and, with the steroids, felt pretty good until Sunday when the nausea would kick in. Super Doc prescribed two different anti-nausea meds that I could overlap so that really helped. That's not to say that I didn't have barf bags in my car and at work just in case. Thankfully, I never needed them. The ringing in my ears has stuck with me, along with the neuropathy. But that could also be attributed to a round of carboplatin and Taxol last year. You might want to check out chemocare.com - it has some great information regarding drugs and side effects. Hope this helps. Please let me know if you have more questions.
  16. eullrich66

    Cisplatin/Alimta Experiences?

    Hi, I start this combo soon and I see some references to this cocktail, but usually other questions after. I am curious about personal stories of side effects if you are in your 40's. When I read about the drugs, they list pretty much all possible side effects, but I guess I'm interested in personal stores.
  17. Last week
  18. Jenah

    New and scared

    For months, docs were treating what they thought was a lung infection. May 17 of this year, I had a left lower lobectomy. May 30 I was told stage 2a andenocarcinoma. Later it was upgraded to 3a, with the KRAS mutation. I did one round of chemo and my kidneys started to go nuts. I can’t do any more chemo. I’m inbetween my planning scan and start of radiation. Never a smoker. 40 years old. And my daughter is only 10. I’m scared out of my mind. Any help and positives would help. Hoping for very few spelling errors as I am sobbing while writing this.
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