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Newly Diagnosed Stage 4 - Any feedback is appreciated.

Posts: 7
Joined: Jan 2012

Well, here's the skinny.... My mom was just diagnosed (2 days ago) as Stage 4 Non-Small Cell (the biopsy did not specify which type of Non-Small Cell). Small nodule on lower right lung, which has spread to (an unknown number of) lymph nodes as well as a spot on the Liver. We are all very scared and still digesting all this "stuff"....doc is starting on Gemzar/Carboplatin Chemo in 3 days. She will be on chemo for a total of 18 weeks going in 3 week cycles, Week 1 both meds; Week 2 one of the same meds from week 1; Week 3 No Meds...then repeat. There is so much information, and I've never been exposed to any cancers in my immediate family. I'm looking for any guidance/suggestions/input anyone has that may help. Can we expect her to lose her hair? How long until she starts feeling crappy from the medicine? What can we (as a support group) do to keep her going? We have a HUGE support team for her and I really believe she can beat this, just quite scared as the doctor indicated "if the cancer is not responsive to chemo" she can begin going downhill in 6 months. This sucks, she just feels a bit under the weather right now, thinking she can begin showing signs in only 6 months.

I appreciate anyone who may take the time to read this and share their opinions. Thanks all!

Scared Chris

Posts: 4
Joined: Dec 2011

Yes my sister was just diagnosed with Stage IV Lung Cancer adenocarcinoma with metatsis to the brain. They removed her brain tumor on December 14, 2011 and she just had her first chemo treatment cispatin and Altima on January 13, 2012. Right now the plan is that she will have two chemo treatments, then scans and then two more treatments and possibly radiation on the tumor on her lung (also three lymph nodes right there too by the tumor are also affected)and also very scared for our sister. Getting educated on cancer, treatments, support groups etc helps. I'll be praying for your mom ChristopherH, that she responds well to her treatment. Bless you and your family and most of all your mom.

catcon49's picture
Posts: 398
Joined: Aug 2008

I am so sorry to hear this about your mom. I also have a mom with stage 4 ovarian cancer. It is very difficult and scary to have a loved one with cancer. Just so you know, my mom was 76 when she started getting chemo, she is now 80. There is no reason for your mom to be sick during chemo there are plenty of meds to help with nausea and other symptoms. If Dr. doesn't prescribe them ask about them. She may not lose her hair right away,(at least my mom didn't, after the chemo built up in her system a bit she did) If you contact the american cancer society they may have a program to help her get a nice wig if that will help her feel more comfortable. Chemo was tough on my mom but she made it through. After treatments, she usually liked something cool to eat, pudding, ice cream etc. She may have some days when she isn't feeling like herself, but bear with her, she is intittled to feel that way. You sound like a very caring son, so I'm sure you will do just fine. Wishing you and your family the best of luck. Stay strong and take care of yourself during your mother's treatment and illness, she will want you to stay health. God bless.

Posts: 7
Joined: Jan 2012

I am very grateful for the feedback so far. Thank you from the bottom of my heart, for taking the time to reply.

feistyD's picture
Posts: 21
Joined: Nov 2011

Hi, I have Stage IV lung cancer and can share my experiences with you. I was diagnosed last April (nine months ago) and am feeling better now than back in April. I am most definitely not on my last legs, so have hope. My cancer was found when I had an MRI by a local orthopedist for a terrible backache- it had already metastasized to my spine. I have trouble walking but hopefully will be having some surgery soon to fix the vertebrae that has compressed (I had radiation to my back tumor). Besides my leg pain I don't have any other symptoms. I have gone through radiation (no side effects) and chemotherapy (gemzar and taxotere -eight cycles). Besides losing my hair and some mild nausea and fatigue, I handled it OK. My tumors (lung and pancreas) are fairly stable, and I will start second-line chemo in a month. I am not a candidate for lung surgery or radiation. I know my situation is grim, but I am determined to make my life as normal as possible. I am still working and I intend to see my 21-year-old daughter graduate from college. After that, I want to see her get married, see my grandchildren, retire...maybe I won't get to do all of that, but that is what I want. I know the prognosis for Stage IV is scary, but the statistics don't apply to me (my tumor is very rare). I didn't want to look at them for a long time, but as I just keep on living without really looking or feeling sick, I get more confident that maybe I can live long enough to get my daughter situated in life. I've had a very full and adventurous life so I don't care as much about my life as I do about hers and my husband's. I don't want to leave them, but, as Christopher Hitchens said, it's like you are at a party and someone taps you on the shoulder and tells you you have to leave, even though the party is still going on. I'm still at the party and I am going to have fun while I am there.

One more piece of advice- find a doctor that you can believe in, the best one you can. The first one was guessing at my treatment (as I said, my type of tumor is very rare), but my new oncologist is much more up-to-date and determined to figure my case out.
Good luck to you and your family.

Posts: 7
Joined: Jan 2012

Thanks for the input. It helps to hear this type of feedback from folks currently battling this disease.

sleepless in jersey
Posts: 185
Joined: Feb 2011

of what your feeling, it struck our family 1/3/11 Mom stage 4 NSCLC (Adenocarcinoma) Lung, Brain, spine & Hips. Mom is 61 yrs old.

Treatment was to have brain surgery, WBR and start chemo right away (carboplatin, alimta)
Mom had lost her hair 2nd week into WBR don't know how quickly she would have lost it if it was just chemo. Her Onc gave us a sheet of places to go for a wig.

Nausea- she did well, she was given pre-nausea IV before they started chemo and gave scripts as well which she took oh maybe a couple of times through-out treatments.

We also got her a 2nd opinion right away as well, went right to sloan kettering so we were very comfortable with the decisions that were being made.

Mom needed lots of rest, food-she did better when she ate small meals though-out the day instead of 3 big meals (the Doc's continue to push her to eat more protein meals fyi)
Dad and I always go to any visit she has to go to, we are the other set of ears. I recommend having a notebook with you everytime somebody goes with her to so you dont forgt your questions and the info he/she is giving you could refer to.

Continue to stay positive and fight the beast!
God Bless

Posts: 12
Joined: Sep 2011

My thoughts are with you during this difficult "initial" period of diagnosis. My Mother was diagnosed with stage iv nsclc in July 2011. What a life changing, whirlwind time for us. She under went 4 treatments (every 3 weeks) of carboplatin and alimta. She just completed her 2nd treatment of maintenance - alimta every 3 weeks.

Treatments aren't easy. My Mother is 79 and was very active with no other health (no heart, diabetes, etc.)issues. Treatments stabilized the disease in lining, rt lung and lymph (and 3 ribs). Her hair has thinned but she had a good head of it to begin with. Affects from treatment are 2 days after with the 5th day being the worse.

Be sure and get meds for nausea and take right away after chemo even if not feeling sick. Small portions of simple, plain food is best. Stay away from sugar - it is cancers best friend! Drink plenty of water - it keeps the kidney's functioning - Mom goes through a case every 5 -6 days! Bottled water has no taste so she prefers it over tap water.

My Mother lives out of state and stays with us for treatment (stanford hospital in CA). Between treatments we take her to her home and to visit other family members and her many good friends. It has been a huge adjustment for Mom (and us) but it is all good.

I hope your Mother sails through her treatments. Best of luck.

Posts: 1
Joined: Jan 2012

Hi Chris,
I'm so sorry your mom is ill. My sister was diagnosed with Stage 3 NSCLC and as you can see from the posts you've received...everyone responds differently to chemo and radiation. So, the little nuggets of tried and true wisdom helped me. Tina did get sick from the chemo..she was on Taxotere and Cisplatin, two rounds of this and then they started radiation; she was not a surgery candidate. Take a notebook with you to every treatment & appt and mark the date. It helps to write questions and thoughts down...2) many small meal high protein meals definitely! 3)Tastes may change due to chemo so try different things 4) take nausea meds before anything...even if you don't feel sick--agreed! 4)Tina's hair fell out about 2 wks after the first treatment--we cut it short first so it wouldn't be so awful--she says this was the hardest part for her to deal with, expensive wig and all : )
5)Chemo kicked her patooty--so she rested often--but she kept up her short walks and we forced liquids 6)she lived on lemon drops because she always had an icky taste after she started chemo. 7)we made a laminated 8x11 card she took to chemo (It was Chemo-Komodo dragon--this helped her envision the chemo destroying the cancer cells) and it also made her laugh 8)Ipod for tunes during chemo 9)we made a chemo bag--small quilt, ipod, Komodo, lemon drops, sprite, nausea meds--you get the pic. I know all of this is random but it's stuff you learn along the way. Hope it helps. Blessings on your family as you start this journey. My sis and I laughed and loved hard during this trip!

Posts: 1
Joined: Jan 2012

I am so sorry to hear about your mother and her diagnosis. My mother was officially diagnosed in April of 2011 after a large tumor was found in her left lower lobe of her lung in March. We didn't find out what type of cancer until her third round of doctors that said it was Stage 3 NSCLC (squamous cell). Hers was a very aggressive cancer and moved quickly throughout her body. We lost her on Dec. 8, 2011. At first, her cancer was responding very well to treatment, she was having radiation/chemo that seemed to slow down the growth and necrotized the tumor in her lung. Unfortunately by August, it had spread to her brain and bone, putting her at Stage 4. They did whole brain radiation to slow the one in her brain and she was put on Tarceva (which she as a candidate for). It worked well until the bone mets started spreading. I will say that along your journey, you will learn A LOT about cancer and its effects on your Mom, yourself, and your faImily. I lived 3 hours away from my Mom, but we visited often, I went with her to her long chemo days and took her to some of her radiation treatments to give my StepDad a break. I will tell you to try to laugh often with her and have as many family members there with her for her treatments. This was the most important to my Mom and looking back, the time was so precious with her. We usually had a roomful of people whenever she had chemo treatments and when she was in the hospital. Keep her spirits up! It may be hard to do, but try not to talk about cancer very much unless she brings it up. My Mom got so sick of talking about it that when I called her every day, it was to see how her day was and to not talk about diagnoses and doctors. Keep a positive attitude always. This will help not only her, but you as well. The oncologists will always be positive about treatment. It is a good thing and a bad thing because you never really know how bad it is unless you do the research yourself. My Mom was never told how long she had left until she was in Hospice. Go into every session thinking that she will respond to chemo and spend as much time with her as you can. Good luck and stay on those doctors. Try to write things down, as your Mom will probably experience "chemo brain" where she will forget things often and forget what she was talking about mid sentence. Be patient, loving, caring, and keep the mood as light as possible. My Mom was only 60 when she passed...and she loved to laugh. I wish you good luck during this stressful time in your lives.

Posts: 7
Joined: Jan 2012

The responses from everyone is so much appreciated! We are very supportive of her and trying not to talk about cancer unless she brings it up (which she has from time to time). She is gearing up for week 2 of her 3 week cycle which will give her Gemzar only this week. Treatment is Tuesday. She has tolerated the first round very well at this point, but I anticipate she will have more bad days as she receives more medicine during the process. Our doc said her chances of fully beating this thing is sub 10%, and if she does not respond well, she could begin going downhill over the next 6 mos. it's still just so hard for me to wrap my brain around her possibly dying in 6-9 mos. she does not "look sick"......this disease sucks!!! About all I can say about it. I must say, seeing her have good days makes me have some additional "peace" through this the treatment process. I'm not organizing my thoughts very well right now, I hope everyone understands where I'm coming from :D

To add insult to injury, my step-dads father just died (not from cancer), so her husband is dealing with so much right now.....he hasn't even been able to grieve for the loss of his father. There is a lot of truth in the sayin, "what doesn't kill you, only makes you stronger."

Posts: 3
Joined: Jan 2012

You do not say how old your mother is - or did I miss it? My 56 y-o husband was diagnosed in August 2011 after 3 misdiagnoses for pain, dating back to January 2011. 5 lymph nodes are fully involved but pathology was necessary to find the type of cancer because they also found a mass in the pancreas and his lungs were almost completely clear.
His first round of chemo was Carboplatin and Alimta. The CT Scan came back with optimistic results and his oncologist has put him on Avastin in addition to the other drugs. We have one more round of chemo and then another scan.
The treatment leaves him with fatigue and no appetite, so nutrition is a very important part of keeping him going. He originally dropped 30 pounds before diagnosis (but he was overweight) and he has put 10 lbs back on - and holding there, at a healthy weight for his size. There has been no hair loss (I think radiation is the worst culprit there).
I'm so sorry for your family. You're all having a tough time of it.
Best wishes to you all.

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