Advice on NSCLC treatment

MrJared · New User Joined: 16 Jun 2009 Posts: 2

Hello everybody ! i would love to hear advice or experiences from other people regarding treatment options for non small cell lung cancer.
My Mum was first diagnosed with non small cell lung Ca in 2004, it first manifested as chest infection that would not go away despite repeated antibiotic treatments.. initially she was told told she had pneumonitis then she was told she had tuberculosis and after further test ... biopsies and scans , she was told she had lung cancer (non small cell type). She had surgery after that to have parts of her left lung removed ( i could not be certain as to how much of her left lung was taken out) and then afterwards had chemotherapy ( the name of her first intravenous chemo drug i cant remember) We were told my mum has 6mos to live. she had 2 cycles of intravenous chemotherapy, it made her fell really ill to the point that she felt it would be the chemo that might just finish her off. but after 2 cycles of it , she had improved and her oncologist suggested a drug called Iressa , a tablet she takes once a day. she would do a cycle of 3 months at a time with this drug and then would have scans to evaluate if the cancer in her left lung is worsening or not. Although eventually she had mets in her spine she had a decent quality of life with this drug. she takes a tablet called bondronat once a day for her bone mets.
Beginning of 2009 her symptoms had come back.. her cough was even worse as it had been preventing her from sleeping, she had scans once more.. her lung scans in particular was'nt very good as it showed an increase in the size of the lesions. But her bone scans were good as some of her spinal lesions had vanished and some had shrunk in size. Abdominal CT scans revealed no mets in the abdominal area. My mum then started getting really breatheless and was found to have pleural effusion.. first they managed to drain aprrox. a litre of fluid via thoracentesis however a week later it re-accumulated and she had to have a chest tube inserted.
It has been more than a month now since.. and we were told by the oncologist that her tablet Iressa no longer works effectivley. She had another CT scan a week ago which showed her lesions to have increased approx. half a centimeter in size ( 3 lesions in total that increased in size) and she would now start treatment with a drug called alimta tomorrow.
I would love to hear from people who have had experiences with Alimta , what sort of side effects should we look out for... or any information about this drug--i have also tried searching on the internet for any information about alimta but hearing it from people who have actually used it or cared for family members who have used it will be very re-assuring indeed.
my mum is very anxious about intravenous chemo as it made her feel really ill last time. Also any advice about non small cell lung cancer will be very appreciated.
Thank you very much.

dano · Posted: Wed Jun 17, 2009 1:15 am Post subject: Re: Advice on NSCLC treatment

Hello Mrjared;
There are a few of us that have taken Alimta, I have been taking Alimta for over a year and have managed fine and I've heard of others that it kicked their butts. I believe that my bones and joints ache a lot now because of the duration and because of this I am now taking it once every 4 weeks, but the results have been great. All scans have been improving. I fight nausea for about a week or so after chemo but that is improving in time. The the white blood cell booster shot (Neulasta) you take the day after chemo during the same time as the nausea, are the most irritating because of the sharpness of the pain and the sudden attack when it comes always surprises me. You can take allergy meds to help combat the problem, but I've been getting fewer attacks and once they start it is only a few days and it's over. I think there are more side effects to the chemo but these are the problems I face, I went back to work as an electrician last September and things are all good.
Your mom has been a fighter and I think she might do better under a more positive Doctors care, She needs that positiveness around her. It sounds like she was Stage one when diagnosed, that is the stage they would normally operate, how ever they gave her a very low life expectancy for that stage, and you say she has been fighting this sense 2004, I think she has done great. I think it may be time to get another doctors opinion with a brighter attitude. The best to you and your mom Jared.
Dan
_________________
55 year old male, Diagnosed Nov. 9,2007 with NSCLC IV with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08 treatments now every 4 weeks with Alimta, taking Lovenox for blood clots, Now working full time
http://cancerforums.net/viewtopic.php?t=9993

thinkpink · Experienced user Joined: 12 May 2009 Posts: 61

Hi MrJared,

My mom was just diagnosed in April with stage IV NSCLC, which was inoperable, of course. She is taking her third round of Alimta/Carboplatin today, and has done very well considering that she is 73 years old.

Like Dano said, some patients (like he and my mom) manage fine with Alimta and are successful in managing the side effects of the chemo drugs, the Neulasta shot, etc. Others have a tough time with it. I hope your mom falls in the group that handles it well!

The Zofran works great for my mom in handling the nausea – she’s only gotten sick twice, after her first round of chemo. The Claritin works for the bone pain resulting from the Neulasta shot. She is also on several OTC generics for heartburn, gas, bowel issues - at times, they move; at times, they move FAST, and at other times, they don’t move at all! Shocked

When she gets a side effect, we counteract it with meds after consulting with her oncologist. I’m like a quasi-pharmacist – I tell my dad what med to give her for what, and when to give it to her! My mom also has mets to the spine and her hip pain is pretty severe, but she tolerates it well and takes Lortab to help with that pain. She also takes meds for anxiety and depression, and so basically she has handled all the “bad news” really well. But lately, we’ve been getting good news, so we give the praise and glory to God for that! She also had several bouts of pleural effusion (which is what lead us to the ER and this lung diagnosis) and a chest tube inserted on two different occasions, and an unsuccessful pleuradesis.

I definitely understand your mom’s anxiety. I am a breast cancer survivor, and this cancer treatment stuff is a scary thing. But, hopefully you and her doctors can put her mind at ease. I suggest you share some of the positive stories with your mom of those who have managed well with Alimta. And reassure her that there are meds that she can take to help with the side effects. I believe the more mentally relaxed a patient is, the better they can deal with the physical issues, even the harsh ones at times.

As a five year lung cancer survivor, your mom is a true fighter! In my mind, I think she can handle this next course of treatment. Wink

I wish you and your mom well, MrJared. Please continue to be as informed as you can…

tp - thinkpink, thinkpositive
_________________
73 yo mother - 29 year breast cancer survivor, radical mastectomy with no radiation and no chemo and no recurrence.

Presented to the ER on April 14, 2009 with pleural effusion and pericardial effusion. Diagnosed on April 17th with stage IV adenocarcinoma NSCLC with mets to the lumbar spine. Began chemotherapy on May 1st- Carboplatin and Alimta plus Zometa for bone mets.

To read a summary of our journey: http://cancerforums.net/about12486.html

MrJared · New User Joined: 16 Jun 2009 Posts: 2

Dear Dan and Pink

I am ever so grateful for the experiences you have shared on here. I have spoken to my dear mum earlier today and have told her of the positive experiences you guys have shared with us as regards the chemo drug alimta.. and i am really happy because she is in good spirits and appears now quite relaxed about it.
Now we have got to take it one step at a time and manage each side effect as they come... and i really do hope she falls into the group that manages the drug quite well.
the drug had arrived via fedex and she is gonna have it in 5hours from the time im typing this post. she had a shot of vit B12 i think 4 days ago and had since started on folic acid tablets.
i will let you guys know how she gets on with it and perhaps ask for more advice depending on how well she reacts to the chemo.
Once again we are very grateful for all the kind words, support and experiences you guys have shared.

dano · Posted: Thu Jun 18, 2009 1:16 am Post subject: Re: Advice on NSCLC treatment

Hello Jared; I didn't mention about the B12 shot, I think it was for energy but never had much of an effect on me, and I too take the Folic acid and it is one of those things that insurance does not cover. But some thing else I forgot to mention as an Alimta side effect and that is constipation. I tried to look past it but each treatment normally was followed with hemorrhoids and bloody bowels. I am taking it more serious now by changing my diet and adding a lot more fruit for the fiber benefit. I've been eating lots of blue berries and have enjoyed the changes to my system.
Glad to here that your mom is encouraged, it is good to have an up beat attitude.
_________________
55 year old male, Diagnosed Nov. 9,2007 with NSCLC IV with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08 treatments now every 4 weeks with Alimta, taking Lovenox for blood clots, Now working full time
http://cancerforums.net/viewtopic.php?t=9993

melkissa · Posted: Mon Jun 29, 2009 10:43 pm Post subject: Re: Advice on NSCLC treatment

I can't offer any advice, I just wanted to say good luck with everything and I will be keeping you all in my thoughts!
_________________
My dad was diag w/nsclc stage 4 & mets to spine & hips on 11/08 at age 43. Large mass on R lung & collapsed L lung. No surgery so chemo & rad 5d/wk. No results. 4/09 rushed to the hospital b/c breathing issues. Hooked up to o2 & treated for infection. Released when o2 levels were good w/help from Hospice at home. In Hospice as of 6/2/09. Passed 6/10/09. Missing you forever daddy.

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