second opinion

This topic contains 28 replies, has 5 voices, and was last updated by JimC Forum Moderator JimC Forum Moderator 2 months, 2 weeks ago.

Viewing 9 posts - 21 through 29 (of 29 total)
Author Posts   
Author Posts
September 15, 2017 at 7:52 am  #1292398    
JimC Forum Moderator
JimC Forum Moderator

Hi deedee,

I’d agree with Janine that the growth of this one nodule justifies treatment, but as we’ve both said if you wait and watch after a course of treatment, you may find that the cancer is quite slow-growing, not requiring additional treatment at least for a good bit of time. And though it seems inconsistent with a stage IV diagnosis, with BAC involved there can be very slow growth.

If I understand correctly, tissue from the initial surgery is being sent for mutation testing, and if that uncovers an actionable mutation such as EGFR, then targeted therapy (e.g., Tarceva) would be the leading choice.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

September 21, 2017 at 5:34 pm  #1293156    

deedee1

thanks for all of the help. Kaiser is very doom and gloom about my prognosis. Nothing positive has been said so I am praying that the chemo they chose for me is going to help. They chose Carboplatin and Pemetrexed so I am sure they know what’s best for my pathology report.

September 23, 2017 at 8:18 am  #1293158    

scohn

Hi Deedee.

Just wanted to send some hope and hugs out to you, with the wish that your treatment goes well and works for a long time. My wife had Carbo/Pemetrexed after she was first diagnosed and it reduced the volume of her tumors by about 85%. We’ll have you in our prayers and thoughts for a very successful treatment!

Scohn


Wife, lifelong non-smoker, dx 4/24/15 adeno NSCLC stage IV, poorly diff. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective, tumor growth, new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – clinical trial drug, large reduction of tumor and mets. 11/16-main tumor growth, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off trial, 9/17 start Gemzar-large tumor reduction.

September 23, 2017 at 9:35 am  #1293160    

deedee1

Thank you scohn! I have been so down and frightened as to what is coming. I have tested negative on all the genetic tumor tests except for KRAS which isn’t any good. Seems my kind of cancer is not a good one. I am feeling fine, no symptoms and very thankful for that. Just knowing in a couple of weeks I will maybe not be feeling so great due to some hope in a bag of infusion. I am obviously at the anger/overwhelmed stage. DId your wife do well with the side effects? How is she doing? My prayers for everyone who is struggling with any disease. I appreciate hearing from those who have benefited from the chemo combo I will be getting.

September 23, 2017 at 12:53 pm  #1293163    

cards7up

I’ve done this combo twice, three years apart and now almost 4 years and NED. Stage IIIA adeno dx in July 2010. Had SBRT and carbo/alimta. Then a local recurrence in 2013.Had surgery and carbo/alimta. The first time I did it, I had extreme fatigue. Most people do not get it as extreme as I did. I just rode it out and never tried to keep a schedule. I’d sleep whenever I felt the need. Then the second time, the fatigue was minimal.
I never had any real nausea either time. Take something for constipation on the day of chemo and keep the fluids up all through treatment. Here’s a link that might help. Take care, Judy
https://www.whatnext.com/blog/posts/24-survivor-s-tips-to-better-handle-chemo-and-radiation?utm_source=September+2017+Newsletter&utm_campaign=Aug+17+Newsletter&utm_medium=email


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

September 23, 2017 at 3:12 pm  #1293167    

scohn

Deedee,

I can only imagine the stress and fear you are going through. I remember the day we heard of my wife’s diagnosis in excruciating detail. I hopes it helps to know that others have been through this and will be thinking about you. My wife did really well on the carbo/alimta, although it did take a bit of time to get all the side effects well-managed. She never had any nausea (hopefully it will be the same for you!) so she finally got them to take the Zofran out of the mix and her digestive system afterwards was much better, but she still needed small doses of steroids to avoid an itchy rash that appeared after the 2nd treatment.

The important thing is to work with your oncologist to keep an eye on any side effects and work to minimize any drugs that are used for side effects that you don’t seem to have. This drug combination does seem to have an effect on blood cells, so I am sure your doctors will keep good track of your red/white blood cells. As they will likely tell you, they may have you take folic acid (check with your doctor on the dosage) as it sometimes helps protect your red blood cells from going too low. Starting with the second treatment, my wife also took neulasta a couple of days after the treatment to keep the white blood cells from dropping too far. But my wife did still feel fatigue, usually 3-5 days after treatment, lasting for about 2-4 days. And her stamina was lower during those times the red blood cells were lower.

I also want you to know that the treatments haven’t held us down too much. While my wife has been on continual treatment of one form or another for about 2 1/2 years now, she has continued to feel generally good, and we have had a wedding (our daughter’s), as well as trips to Israel, Quebec, and the Galapagos.

May your treatment work really well with a minimal amount of side effects!

All the best, Scohn


Wife, lifelong non-smoker, dx 4/24/15 adeno NSCLC stage IV, poorly diff. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective, tumor growth, new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – clinical trial drug, large reduction of tumor and mets. 11/16-main tumor growth, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off trial, 9/17 start Gemzar-large tumor reduction.

September 23, 2017 at 3:21 pm  #1293168    

deedee1

Scohn; How awesome that she is doing so well! You just gave me hope. Kaiser has been very doom and gloom. They don’t smile or express much emotion. Makes you feel hopeless. I can’t let them destroy my self esteem. I am going to change back to my previous doctor since we are in open enrollment. If I am going to fight this battle, I am going to fight it with physicians and nurses that have a bit of a sense of humor. My goodness I worked for hospice and nothing helps more than a smile and a positive interaction! So hearing from you and how your wife is still with us gives me hope. I don’t have any of the genetic mutations for all of the new drugs out there so that was a bit unsettling also. Thank you , thank you, thank you and God bless you both!

September 23, 2017 at 3:23 pm  #1293169    

deedee1

Cards7up; sounds like you are doing well having started your journey in 2010! Wow! That’s great!

September 24, 2017 at 8:13 am  #1293177    
JimC Forum Moderator
JimC Forum Moderator

Hi deedee,

You have received some good advice from Judy and scohn. As they say, each patient’s experience is different, but I will add what I know from my late wife’s use of carbo/alimta. She too had a period of fatigue beginning a few days after chemo, but not so much as to keep us from remaining active. She also never had significantly lowered blood counts, with no necessity for interventions on that account, although folic acid and dexamethasone (on the day before, day of and day after chemo) were included in each cycle.

She did have some nausea, and found a few things that helped minimize it. First of all, it’s best to try to prevent it. Taking your anti-nausea meds on a schedule rather than in response to it can help, as can taking a walk outside in the fresh air. You may also need to experiment with various foods to find which cause you trouble and which don’t. Although less spicy, easier to digest foods tend to work better for most people, don’t be too surprised if some foods you wouldn’t expect to tolerate surprise you, so be creative! Also, a well-balanced diet is great, but since you need the calories, eat what you feel like…if that happens to be bacon or chocolate, so be it!

I also wanted to add that although mutations and targeted therapies get much of the buzz, chemo can be extremely effective for many patients, so you shouldn’t feel too left out. In addition, the pace of research into new therapies, and the arrival on the market of such agents, is faster than ever before, so every day that your treatment keeps your cancer under control provides an opportunity for a new therapy to be introduced.

Best of luck with your treatments,

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

Viewing 9 posts - 21 through 29 (of 29 total)

You must be logged in to reply to this topic.