54 YO Vietnamese female never smoker Dx stage 3A adeno, starting cisplatin/etop

Portal Forums Q&A, Ask Us New Questions 54 YO Vietnamese female never smoker Dx stage 3A adeno, starting cisplatin/etop

This topic contains 35 replies, has 6 voices, and was last updated by  cubety 1 week, 6 days ago.

Viewing 16 posts - 21 through 36 (of 36 total)
Author Posts   
Author Posts
May 29, 2018 at 12:29 pm  #1294496    

cubety

Huh, technician just came out with wife and said computer program wasn’t communicating with technician properly so they called off today treatment until tomorrow. At least it is only one day. Pretty unbelievable given all her continued delays. Not surprised I guess. I got a referral in to SCCA Onc for next Friday.

Well, fingers are crossed chemo can start today if her labs turn out better.

May 29, 2018 at 1:36 pm  #1294497    

onthemark

I’m glad you have a referral in to another oncologist and treatment facility. It is hard to believe all the delays you have been through. Your wife deserves the best care.

Do you know what the problem was with her labs the last time and whether it makes any difference now she is scheduled to get carbo/alimta rather than cisplatin/etop?


10/2015 Chest xray found a nodule as part of a physical (no symptoms).
01/2016 Upper left lobe lingula preserving lobectomy stage 2b for 1.9 cm invasive adenocarcinoma with additional 2 mm AIS nodule found in pathology.
03-05/2016 Sixteen weeks of adjuvant cisplatin/vinorelbine.
07/2016 Durvalumab adjuvant clinical trial discontinued after 1st dose knocked out thyroid.
12/2016 Revised to stage 1b (due to VPI) after new guidelines for multifocal lepidic lung cancer.
07/2018 Next scan.

May 30, 2018 at 10:58 am  #1294505    

cubety

Interestingly, her BUN and creatinine numbers were high May 28 but were within normal range May 18 in previous labs workup. Then yesterday just one day later the 29th they ran same labs and her BUN/creatinine numbers were back to normal range. I guess the upside is with her numbers bouncing so much in short time, they switched her from cisplatin to carboplatin. Haven’t had chance to ask chemo onc on the specifics of why starting cisp instead of carb but am sure they had something in mind. She is getting port placed now (left side since treatment area is right side mostly upper lobe).

May 30, 2018 at 5:28 pm  #1294507    
catdander forum moderator
catdander forum moderator

Good to hear about your wife’s levels.
There’s quite a controversy over whether cisplatin has a slight edge over carboplatin but everyone agrees cisplatin is more toxic (including kidney toxicity) so maybe the onc decided your wife would have a better chance of completing treatment with carbo.

Hang in there! I’m keeping you both in my thoughts.
Janine

June 1, 2018 at 10:07 am  #1294527    

cubety

Thank you catdander, yes it does seem like there is some level of consensus that cisp is the choice over carbo all side effect issues aside. Maybe she could try to go thru cisp later on if she tolerates this 4 cycle every 3 weeks carbo/alimta run although we have no idea at this juncture how things will turn out.

The 2nd biopsy still perplexes me a little bit. We spoke with the Dr that ordered it and he mentioned having a primary tumor sample for safe keeping basically is good to have and not to run any testing at this point. Kind of was hoping they’d genetic profile it to get some clarity on the adeno moving forward and avoid any future possible delays given the 4 1/2 month excruciating wait from all the things that arose to get going on her stage 3 adeno chemo/rad. The one thing he mentioned is if they ran profiling now they may not have enough sample for potential other future tests. Anyhow, I’m not sure how long a sample lasts or how much might be used for various tests.

So far she is tolerating chemo/rad but it is very early on (3 days of rad and chemo was Tuesday).

Thank you so much to the magic trio- Jim, catdander and onthemark! And to everyone else thank you for the continued support. Keep hope in your hearts as life’s journey moves forward for all of us deeply involved with health issues.

June 6, 2018 at 12:34 am  #1294541    

cubety

Today (well yesterday now), we were left a message by the desk of the surgeon whom placed my wife’s port last Wednesday. They mentioned we had been referred to them by our chemo onc in a message they left earlier (I was returning call).
I called them back asking what we were referred for this time. They said they needed to schedule us for a port placement. My wife overheard the conversation and just started shaking her head. I then let the people know the mistake they made, that my wife already had their doctor place the port last Wednesday.

Honestly, it’s only a one person anecdotal view but our healthcare system is broken in my opinion. I didn’t even bring up the chemo problem my wife had on her first dose the 29th. The nurse placed a new IV line due to previous day’s nurse not locking IV so it backed up and blocked. The may 29th nurse placed the line, infused her with I think saline drip so I left for work, then nurse pushed Benadryl just before starting the chemo drip. I left to work when wife said she’d be fine w/o me. Right after I left my wife noticed pain when the Benadryl was pushed. Sure enough, apparently the nurse went thru back side of vein when placing IV causing the drip and Benadryl to enter the surrounding arm tissue. Thank goodness my wife spoke up immediately as she is soft spoken before the chemo went in. Otherwise the chemo would have ended up in her arm instead of bloodstream had she not told the nurse.

Guess I should not be so negative. These attending people are certainly competent and usually very polite. But it is my observation they are juggling too many things causing lack of focus and potential dire outcomes if someone isn’t highly knowledgeable and communicative with them at most every step. Maybe the 4 1/2 month wait has jaded me a bit. My wife is a trooper thru it all, appreciative of all the people. They’re good people for large part but just make too many mistakes.

June 6, 2018 at 12:34 pm  #1294542    
catdander forum moderator
catdander forum moderator

cubety,

Wow, I’d make sure every move they made was the right one. Ask what’s happening at every move. I know that it will get old for them and define your wife for the cancer center but it’s a way to make sure they are thinking through their steps. I’m that patient not so much because I’m worried they aren’t doing it right so much as I’m curious. But it does occur to me as a teacher that it could work better than to let an overworked, under manned cancer center continue to make mistakes. Too, asking a lot of questions gets people talking and the more you know the more you know what to expect.

It’s good to hear your wife is so far so good.

All best,
Janine

June 6, 2018 at 5:34 pm  #1294545    

onthemark

From what I have read of other people’s experiences, the whole health care system isn’t broken although some places are making a lot more mistakes, errors, miscommunications and treatment delays than other places. I wouldn’t give up on finding better care for your wife at a different place.


10/2015 Chest xray found a nodule as part of a physical (no symptoms).
01/2016 Upper left lobe lingula preserving lobectomy stage 2b for 1.9 cm invasive adenocarcinoma with additional 2 mm AIS nodule found in pathology.
03-05/2016 Sixteen weeks of adjuvant cisplatin/vinorelbine.
07/2016 Durvalumab adjuvant clinical trial discontinued after 1st dose knocked out thyroid.
12/2016 Revised to stage 1b (due to VPI) after new guidelines for multifocal lepidic lung cancer.
07/2018 Next scan.

June 6, 2018 at 6:37 pm  #1294546    
JimC Forum Moderator
JimC Forum Moderator

cubety,

I’d echo what Janine and onthemark have said. Vigilance is always a good idea. The more you know about what’s supposed to happen, the better you can keep the staff on its toes. Even though my wife was at a very good cancer center with excellent staff, we always kept an eye on what was happening, encouraging the staff member to describe the procedure as they went along. In that way, we could recognize when something wasn’t right, even those things that happen despite best efforts.

And as onthemark suggested, if problems continue then perhaps it will be time to look for a different facility.

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

June 7, 2018 at 9:14 am  #1294550    

cubety

Excellent advice catdander. Yes letting them know I want to learn and at same time am curious helps conversation and learning for sure. The radiologist did the best job showing pictures, values, etc of some of the diagnostic work to talk thru some things. I did go straight to the chemo oncologist office yesterday to get some paperwork I needed that they previously misplaced and had been told could take 7 days to get taken care of by front desk when I brought in a second batch of Polk. Thoughtfully, the Dr came out to meet me after a short wait (told front desk I’d wait in lobby til nurse was free- but Dr came out instead) and Dr filled it out right there. Took about 2-3 minutes, not 7 days :).

SCCA appointment is tomorrow and it said to expect a 2 hour appointment, music to my ears if it is mostly with an actual Dr that talks thru things clearly and in depth.

Wife is definitely trying to power thru treatments. Dry cough, loss of appetite but we walk each day and she puts down food better in morning than later so tries to get a bigger breakfast before completely losing appetite.

I so wish I could go back to get her treatment going sooner as I think that 4 1/2 month wait is going to prove to be a huge huge obstacle to her outcome. Wish I had known Asian female never smokers are one of the highest risk groups for never smoker lung cancer as well, I’m confident had that seed of knowledge been known to me, we would have had that biopsied way sooner. But can’t change it and there will be time to reflect later. Now is time to move forward to support her every way I can.

June 7, 2018 at 9:18 am  #1294551    

cubety

Onthemark, yes we are looking forward to tomorrow’s SCCA appointment. The local hospital is so close to where we live and without traffic so going to SCCA will require a lot more time and planning if we switch but I will try to find out how many appointments, etc we may be looking at if we do switch. I’m assuming with my wife’s current normal treatment plan that they would wait for that to finish but we’ll see.

Thank you again for the helpful advice.

June 8, 2018 at 8:50 am  #1294555    

cards7up

Keep an eye on the air where the drugs were pushed incorrectly, she could end up with a staph infection. I had this happen when a fill-in nurse came to the chemo area, as they were short that day. I told her when she pushed the saline that it burned. She said, oh you’ll be alright. The next day my arm was on fire and started swelling up. I called the nurses station and they had me go right in. It was staph and it took two antibiotics to clear it up.
Do you know why they’re using Benadryl on her? That can make you very tired. I took it OTC due to flu like side effects from the alimta. Then I had an allergic reaction on my 7th carbo infusion and they pushed it through the IV. Now no more platin drugs.
I saw where you wondered why no mutation testing. She’s stage IIIA and they’re going for the cure right now. If she has a recurrence, then they should do a new biopsy as her previous treatment can affect mutations.
Glad she’s going to SCCA.
Take care, Judy


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

June 8, 2018 at 9:56 am  #1294557    

cubety

Than being Judy, I’m keeping an eye on the area. There is not redness or swelling thankfully but still some bruising from the vein break. Today we get a consult with a chemo oncologist at Seattle Cancer Care Alliance, hopefully much of the time will be one in one with the Dr and not too much paper pushing and nurses. We’re hopeful for today.

On a side note to onthemark, he gave a real helpful link with a bunch of information including (I think) some retrospective studies comparing IMRT with 3D that showed OS times substantially higher in the generalized IMRT group when looking at chemo/rad concurrent with followup surgery but also saw this to potentially add some complexity to the issue:

https://aapm.onlinelibrary.wiley.com/doi/full/10.1118/1.4856175

Wife is ready to walk so off we go :). Thank you all for the support and wishing you all well in your continued journey.

June 8, 2018 at 11:10 am  #1294559    

onthemark

Hi Cubety,

Going for walks is so important to maintain if at all possible during treatment, so I am glad to hear you are doing that with your wife. I found a fitbit during that time to be a great motivator to get more than 2500 steps each day. There were a few days where I really couldn’t manage that and some days where I could do much more. I also ended up on neulasta injections to maintain neutrophils levels so as to be able to continue adjuvant chemo. In retrospect I think the adjuvant chemotherapy treatment was a mistake. Mostly because of the long term side effects with cisplatin. Even though the recommendation for chemotherapy was approved by a local tumour board, but I did not get a truly independent second opinion.

Many people will look back on their treatment and see things different in retrospect than going into it.

I hope your review with an oncologist at SCCA meets your expectations for quality and thoroughness. We also all have different tolerances for mistakes and what we are willing to trade off.


10/2015 Chest xray found a nodule as part of a physical (no symptoms).
01/2016 Upper left lobe lingula preserving lobectomy stage 2b for 1.9 cm invasive adenocarcinoma with additional 2 mm AIS nodule found in pathology.
03-05/2016 Sixteen weeks of adjuvant cisplatin/vinorelbine.
07/2016 Durvalumab adjuvant clinical trial discontinued after 1st dose knocked out thyroid.
12/2016 Revised to stage 1b (due to VPI) after new guidelines for multifocal lepidic lung cancer.
07/2018 Next scan.

June 8, 2018 at 10:10 pm  #1294564    

cubety

Yes getting fresh air is a good thing and she is still well enough for both of us to enjoy a neighborhood walk. Hopefully others out there are able to challenge themselves to get some outside air with walks.

Visiting SCCA, minus the traffic, was well worth it to get a slightly different angle. We didn’t get into specific treatment detail but the chemo onc definitely mentioned immunotherapy as a probability after first line treatment. Surgery is potentially an option at probable stage 3A but 3 mediastinal were positive- 2R, 4R and believe 10R with 2L unable to check/find in mediastinoscopy and having SUV similar to 2R at a lowish 2.7 level. So while surgery isn’t ruled out, it is less likely with the wide local advanced stage presence.

The chemo onc also mentioned getting the 2nd biopsy genetic profiled thankfully. The current onc mentioned not to worry about 2nd biopsy. Considering the hemothorax involved and temporary excruciating pain my wife felt from that (she reported she couldn’t breathe when pain first hit her), it was reassuring to hear it is going to be ordered out to lab by this onc.

8 days of 3D radiation under wife’s belt (22 to go) and one round of carbo/alimta done with some smell sensitivity and appetite loss but nothing major so far. Hoping this continues for the next 3 carbo/alimta cycles.

Wish I knew a lot more, it feels like going thru a college course trying to get caught up on the moving parts to help my wife out but it’s about all I can do outside keeping insurance by continuing full time work. Thank goodness for FMLA.

I hope everyone gets to enjoy the weekend. Thanx again for all the help.

June 8, 2018 at 10:25 pm  #1294565    

cubety

PS Judy- yes that is the line of thinking from current chemo onc (trying for cure with concurrent chemo/rad- 60 Gz dose for rad) on the 2nd biopsy. Still, today’s onc said the information on primary tumor may be of benefit still and with mention of immunotherapy entering the conversation, I am thinking she is looking at targeting that original tumor profile to use targeted followup care after the current run (not her words)possibly for cleanup. She also mentioned typically doing 6 month scans at start instead of 3 which gave me the knee jerk reaction of why wait 6 months but we’ll see how things go if we go that route down the road a little further. I just don’t like the idea of waiting for symptoms to show outside the 6 month window given how quiet and sneaky this stuff can be.

The Benadryl I will ask about at next infusion- thanx for pointing out the why on that one. Sorry you had to deal with some trouble with your IV treatments too.

Take care and enjoy the weekend. Thanx again for your informative advocacy!

Viewing 16 posts - 21 through 36 (of 36 total)

You must be logged in to reply to this topic.