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, 2 days ago.

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May 26, 2018 at 9:12 am  #1294458    

cubety

My wife was misdiagnosed with fungal mass Jan 18th ’18 and put on voriconazole 2 months for RUL mass 1.8 cm x 1.6 cm. Finally had biopsied April and found adeno (no genetic profiling done). Scheduled lobectomy, went in May 11 but mediastinoscopy found R2 and R4 mediastinal + for adeno. This Halted lobectomy, told to have another biopsy which happened May 22. Now told to start cisplatin/etoposide 2 cycle 28 day regimen concurrent with radiation of primary tumor & 2nodes. Theyre not waiting to have 2nd biopsy sent to lab before chemo treatment, not sure why after wife had hemothorax and pain from 2nd biopsy that now seemed not needed if they aren’t going to genetic profile it. I’m trying to get clarity why they are not testing biopsy now, as the chemo onc originally (right after cancelled lobectomy) said she wanted to wait for 2nd biopsy results before starting plan.
Very long wait for wife, mass was found Jan 18th and only now going to start chemo/rad next week, 4 1/2 months after mass was found. Questions: 1- is cisplatin/etop still considered top standard of care for curative approach stage 3A adeno? 2-after first cycle should we seek 2nd opinion from another chemo onc, wife needs treatment asap so we will start this then look for more guidance thru 2nd opinion if others think it’s appropriate. SCCA is within driving distance so any names for chemo onc if allowed to mention publicly would be great! Wish my wife well, she wants to do anything to keep going with our 15 year old daughter inseparable from her. Incidentally, chemo starts Monday on our anniversary. Best wishes to all out there and thank you so much for any help.

May 26, 2018 at 4:30 pm  #1294459    
JimC Forum Moderator
JimC Forum Moderator

Hi cubety,

Welcome to GRACE. I am sorry to hear of your wife’s diagnosis, and that it has taken so long to get to the point of treatment. Quite often in the case of small masses, before such a mass is biopsied a regimen of antibiotics or an antifungal medication is prescribed. Unfortunately, the diagnositic process can take a while and it is frustrating.

It seems likely that there wasn’t enough tissue from the first biopsy in order to perform genetic testing. Although genetic testing is now a standard component of lung cancer workup, the standard treatment for stage III disease is concurrent radiation and chemotherapy, rather than targeted therapy, which has not been established to be effective in that setting regardless of mutation status. As you can see from Dr. Hanna’s discussion here, cisplatin/etoposide is one of several chemotherapy combinations typically used and found to be effective.

Although I’m sorry that the second biopsy caused your wife such difficulty, at least now if further systemic treatment is required in the future, tissue should be available to perform mutation testing so that an appropriate follow-up treatment can be chosen.

Good luck with chemotherapy and radiation.

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

May 26, 2018 at 5:11 pm  #1294460    
catdander forum moderator
catdander forum moderator

Hi cubety,

Welcome to Grace. I’m so sorry to hear about your wife’s diagnosis. It’s very likely the wait from january to now hasn’t changed her outcome so I hope you and she won’t dwell on it too much as it also won’t change things now and there’s so much more that needs your attention now. It’s impossible to tell from the forum if a biopsy would have been the standard next step, there may well have been a good reason to try an anti fungal first.

The decision on how to treat stage III nsclc is one of the most difficult to put into nutshell (simple answer), there are so many individual variables. Etoposide and cisplatin given concurrently with radiation is a curative treatment for stage III. As a matter of fact my husband was diagnosed with stage III and had a tumor that was inoperable so was given the same, concurrent chemo/rads with etoposide and cisplatin. That was 9 years ago and we’re both happy he’s here today. :) So I’m a fan.

Surgery is still the standard of care if the tumor is operable and the person is strong enough to have the surgery. However there haven’t been any trials that have proven surgery to be better than chemo/rads mainly because most people want to choose surgery so they aren’t willing to participate in a trial that would only give them a 50% chance of being put into the surgery group. For now most people who have a choice choose surgery even with the higher risk of adverse events.

Cont’d

May 26, 2018 at 5:24 pm  #1294461    
catdander forum moderator
catdander forum moderator

Jim already commented but I’ll keep what I’ve posted and finish here.

A second opinion is a good idea with stage III especially when your close to SCCA. I don’t know any oncologists there though they are a top rated cancer center so you won’t go wrong. Dr. Howard (Jack) West is a medical oncologist and Medical Director of the Thoracic Oncology Program at the Swedish Cancer Institute in Seattle, Washington and he is the man behind Grace. He started it and after 10 years is still the president and CEO of Grace. I may be a little biased here but he is the person I’d see if I lived on that side of the country.

Most oncologists won’t want to change treatment once one has been started. It’s not too late to get a 2nd opinion before beginning and you want to get it right but it sounds like the plan is appropriate and she can start now. It’s possible that she can get an appointment quickly at scca or swedish and still get started in a week or 2. That’s up to your wife and probably you too. If she is really set on starting treatment it’s a perfectly sound start. So yes, while this isn’t ideal she can start treatment and get a 2nd opinion at the same time.

I hope your wife does as well as my husband. BTW my husband was 54 when he started too.
Keep us posted.
Janine

May 26, 2018 at 5:34 pm  #1294462    

onthemark

Hi Cubety,

I’d only add a little to what Jim and Janine wrote about your wife’s treatment plan by reinforcing the questions you have about the second biopsy.

Was there not enough tissue in the first one? Why couldn’t the lymph nodes that were confirmed as adenocarcinoma in the mediastinoscopy provide another biopsy sample? It’s understandable to want to biopsy before radiation. On the other hand there can be new mutations that could develop were your wife to relapse after treatment so that would call for yet another biopsy. It’s important to have confidence in your team so I would ask her oncologist to clarify the reason the second biopsy was ordered.


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.

  • This reply was modified 3 weeks, 1 day ago by  onthemark.
  • This reply was modified 3 weeks, 1 day ago by  onthemark.
May 26, 2018 at 10:11 pm  #1294465    

cubety

Wow terrific feedback already! It is much appreciated and glad to see the depth of knowledgeable people here. All points very true, especially about moving and looking forward while tossing the past frustration aside.

On the biopsy side, I haven’t had a chance to clarify the thinking but am wondering if it came down to a group of doctors (tumor board) deciding to take a course they might have hesitated on immediately after cancelled lobectomy with 3A being so potentially variable for treatment. Tumor board meets every 2 weeks so this last Monday would’ve been their first chance to collectively discuss wife’s updated status. Regardless, we are moving ahead and maybe the old standard cisp with etop will put her in position to tolerate lobectomy later IF that is recommended, her primary tumor is RUL and central. It (surgery post-concurrent rad/chemo if shrinkage of primary is significant) was being actively discussed with UW surgeon from what I gathered, with radiation being a potential sticking point whether to do or not if surgery may happen later.

As you mentioned, there is now enough tissue in most recent biopsy if targeted or immuno comes into mix. she has bleeding problems during biopsies so they were cautious first time especially in light of her massive hemoptysis event Jan 18th at home. The potential for new mutations definitely could be a concern if much time lapses between second biopsy and some future progression.

At this juncture, getting started has brightened my wife a little bit. It is tough knowing it is in there, metastasized, and having to wait to get rolling. Chemo start will be an amazing memory for us at least! I pushed to start her Monday the 28th instead of June 4 when I found out they had a few infusion staff working that day. May 28 is our 18th anniversary. She might not be thrilled with me after a few days though after reading about cisplatin :). She is definitely ready.

Thank you! And take care everyone…

May 27, 2018 at 7:58 am  #1294467    

onthemark

Cubety,

It makes sense you and your wife would want to get the ball rolling and treatment started as soon as possible after such a long wait. Congratulations on your upcoming anniversary and fingers crossed you get a hoped for response to chemo. As already mentioned stage 3 is complex and there are many treatment avenues.
Here is a publicaly paper that might provide some background information on treatment guidelines regarding neoadjuvant chemoradiation and surgery in Stage III lung cancer:

Oncological outcomes from trimodality therapy receiving definitive doses of neoadjuvant chemoradiation (≥60 Gy) and factors influencing consideration for surgery in stage III non-small cell lung cancer

https://www.sciencedirect.com/science/article/pii/S2452109417301148

Patients do a lot better if the lymph nodes can be cleared and then surgery can be performed. Do you know what dose they are considering for radiation?


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 27, 2018 at 2:22 pm  #1294468    

cubety

I will have to ask for dosages on rad and chemo, as the doctors did not mention and I did not ask yet. Thanx for pointing us to the literature and helping guide us on relevant questions about treatment. I will try to give updates as we progress on this impactful journey.

We will be at infusion center today so I will ask if nurses know the prescribed cisp/etop doses. My guess is they are standard. My wife is fairly small at 120 pounds and 5’1″. Hopefully the nurses are excellent with IV needle placement to start as my wife hasn’t had time for port placement (Wednesday scheduled) and chemo gets going tomorrow AM. SHe has very small veins so we tend to advocate right away on getting specialized IV placers given how many blown veins she has gone thru.

Thank you so much for the help and guidance. Also, it is heartwarming to read about catdander, JimC and their journey in life. Take care all and thank you for the well wishes.

May 27, 2018 at 7:53 pm  #1294470    

cubety

Quick update. Looks like she will be starting at 50mg/M2 for both cisplatin and etoposide.

May 27, 2018 at 7:59 pm  #1294471    

cubety

PS- onthemark, that research was a very interesting read and quite relevant to my wife’s particular case given her age and general good health. I will try to bring it up with our primary and chemo onc when we see them in the coming week. Thanks again.

May 28, 2018 at 7:49 am  #1294472    

onthemark

Cubety, I’m glad you and your wife found that paper relevant to your situation. You might print it out and bring a copy with you to your appointments. It helps to put your wife’s treatment into a context of questions like under what conditions would she qualify for later surgery and what is the planned dosage schedule of radiation including the total dose as a parameter. It might also help you decide if you want to get a second opinion about her overall treatment plan. Best of luck!


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 28, 2018 at 12:46 pm  #1294476    
catdander forum moderator
catdander forum moderator

Happy Anniversary!

I wonder what type of radiation will be given. In the retrospective annalysis given in the link in onthemarks post the 2 types of radiation looked at are imrt and 3-d conformal but not sbrt. It’s possible the tumor is small enough to be treated with sbrt which has proven to be a superior method of delivering radiation to small
nodules. I don’t know that there are studies that have looked at a trimodality that includes sbrt. There’s a similar discussion that focuses on sbrt and no surgery for a person who isn’t able to undergo surgery. It may be of interest and is an ongoing conversation if you have comment or question, http://bit.ly/2kA2Mwt

I hope your wife did well today and feels up for a little bit of celebration. The steroids do an excellent job at disguising the toxicity for the day of but don’t be fooled in thinking she’ll not need anti nausea pills that may have been prescribed with specific schedules. Keep in mind some anti emetics work by keeping nausea at bay before you feel bad so take as prescribed.

All best,
Janine

May 28, 2018 at 5:04 pm  #1294481    

cubety

The tumor was 1.8 cm back in March and I don’t think we’ve had a high res CT since then. Unfortunately today, after getting in around 8:30 AM, we were held up after pumping her full of fluids. Her kidney function was fine on May 18 last blood tests but were not today. So yet again we had to avoid treatment. Radiation will start anyway tomorrow. It will be 60 Gy or whatever dosage units they assign that so probably fall into the area discussed in onthemark’s link.

At least the potential cisplatin side effects hit won’t be happening, it will be carbo/alimta now. Now I will be on the insurance company bright and early to try and get quick turnaround approval for yet another treatment plan change to carbo from cisp. They (insurance) must be wondering what will happen next to have me call and bug them LOL. I felt quite weak though when she looked at me today after the news to cancel treatment when the nurse left. My wife said “maybe I shouldn’t seek treatment, I feel like nothing is going to get done anyway”. Made me feel pretty helpless with our 15 year old daughter there… Anyway, my wife is feeling the signs of wear on her. Her hair is really starting to drop without any treatment yet so at least treatment will mask that her disease is causing it. She has been at such high stress levels every time a supposed treatment is going to happen only to have another delay, she is unfortunately physically and mentally losing a step. I got her a short nap today since she didn’t sleep well.

Our healthcare workers are overworked too. Nurse placed IV in my wife’s thin vein, pumped her full of fluids, then after cancelling treatment she forgot to lock the IV flow so blood backed up and blocked the port. Another vein that can’t be used for tomorrow’s labs or Wednesday port placement. Sigh. I pray Something good will come of all this constant delay, 4 1/2 months primary tumor seen and counting at stage 3A last we knew May 11. She so desperately needs good news. Take care all…

May 28, 2018 at 6:30 pm  #1294484    
JimC Forum Moderator
JimC Forum Moderator

Hi cubety,

I’m sorry to hear of all the problems at today’s attempted infusion. Perhaps the start of radiation will buoy your wife’s spirits…it seems that for most patients setting a treatment regimen and beginning to fight the cancer can be very reassuring and I hope that is the case for her. If you’re looking for good news, for most patients the carbo/Alimta regimen is much better tolerated than one which includes cisplatin, and Alimta if often considered the easiest-tolerated lung cancer chemo agent.

As Janine suggested, taking anti-nausea meds on a schedule, prior to actually feeling nauseous, can be much more effective. In her first cycle, my wife (who also had carbo/Alimta) found that nausea began on the second day after chemo, so in later cycles she began her anti-nausea meds prior to that time. We also found that getting out for a walk in the fresh air helped, as well as eating smaller snacks rather than larger meals and eating whatever seemed palatable and didn’t cause nausea, including some foods that might seem surprising. Although it’s good to try to eat a healthy, balanced diet, when you’re trying to take in calories without causing nausea, whichever foods get the job done are good choices.

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

May 28, 2018 at 10:26 pm  #1294488    

scohn

Hi Cubety.

I also wanted to add my hopes that all goes well tomorrow and that your wife will get a little boost from finally starting the treatment. And a happy anniversary to you! For my wife and me, we have found that celebrating the ongoing occasions, regardless of where she is in a treatment regimen, just helps bring down our anxiety a couple of notches and our smiles up a couple of notches.

I also hope the future treatments with the Carbo/Alimta go well – that was the first treatment my wife was on, and I also agree with the prior comments that working closely with your doctors regarding side effects and adjusting dosages up or down on side effect medications (steroids/anti-nausea/etc.) and taking medications prior to the onset of side-effects can make all the difference in easing the treatment regimen. I’m sure your oncologist will mention it, but be sure you talk to the oncologist about folic acid supplements prior to and during the Alimta treatments to help reduce the effect on the red blood cells.

I’ll be thinking of you and your wife and sending wishes that all your treatments are effective, tolerable, and speedily bring your wife to full restoration of health!
-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-tumor growth, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off trial, 9/17 Gemzar- tumor reduction, then stable.

May 28, 2018 at 10:29 pm  #1294489    

cubety

Thank you Jim for the food tolerance tips and direct experience with hopefully the new carb/alimta regimen. Yes radiation will at least get one ball rolling and I will be on the phone early to try and connect and expedite things for insurance on the chemo side. As far as nausea meds, it sounds like the ones given IV typically last about 8 hours so we will probably do as you suggest and try to front run the nausea at the start with maybe staggering two of the oral doses after going home.

She did get a nap in today but didn’t feel up to getting outside. I’ll try and get her a short walk before heading to work tomorrow. Our anniversary was memorable. Looking forward to our 20 year in two more years!

Take care all and well wishes to all too…

May 28, 2018 at 10:42 pm  #1294490    

cubety

Thank you scorn for the folic acid heads up. I wrote it down to bring up during appointment early next week. I wish your wife and you both the best in all parts of life each day. It helps to hear from others facing adversity bravely.

May 29, 2018 at 7:21 am  #1294492    

onthemark

Hi Cubety,

I hope that radiation goes smoothly today and your wife finally starts treatment. I was on Emend, Granisetron and a steroid and never had a serious bout of nausea whilst on chemo. The modern drugs make a huge difference.

As well, the new platinum doublet your wife will be on is much easier to tolerate than the previous one, with less likelihood of long term side effects. I am really astonished at how long it has taken for her to be diagnosed and treatment started. It’s no wonder this has started to affect her mentally. There seems to be a lot of changed plans thus far and I would look at other options for treatment if they can’t get your wife started on a full chemoradiation plan right away.

You both have been waiting a long time for this and I truly hope all the obstacles are overcome now and she has a good response to treatment.


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 29, 2018 at 9:46 am  #1294494    

cubety

Thank you onthemark, I just got off phone with radiology receptionist to find out they are using 3D instead of IMRT starting treatment today which kind of goes against the literature link you cited for better outcomes with IMRT so am waiting on callback from Dr to give rationale behind 3D. At any rate, she should start treatment radiation today and hopefully get chemo going in next day or so if things work out. Going to try to look up the IMRT info again real quick, not sure if switching from 3D is a big deal or a quick fix if Dr says ok on IMRT.

THanx again all, it truly has been frustrating seeing her start to decline last couple weeks mentally and some physically too but she is very close to getting started finally…

May 29, 2018 at 12:05 pm  #1294495    

cubety

Still at radiologist, was very helpful talking thru all the changes and trip ups to my wife’s care thus far. Also we received a pretty thorough explanation of doing 3D vs IMRT, a little bit had to do with insurance potential hangup but also had more to do with treatment area not over the heart at all with 3D as well as IMRT potentially exposing the left lung upper regions to low dose radiation. Her left lung is quite clear so they felt any radiation to that side would have slight potential longer term risks vs the general ‘box area’ the 3 D does. Her local advanced area on track side is not in a large window too so fits fairly well into the 3D field.

Now hoping her labs later today allow for chemo to get going so she can start her hopeful climb to NED. One step at a time. Thanx again all for helping empower patients with knowledge and experience.

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