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.
Sat, 05/26/2018 - 16:30
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.
Sat, 05/26/2018 - 17:11
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.
Sat, 05/26/2018 - 17:24
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.
Sat, 05/26/2018 - 17:34
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.
Sat, 05/26/2018 - 22:11
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...
Sun, 05/27/2018 - 07:58
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
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?
Sun, 05/27/2018 - 14:22
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.
Sun, 05/27/2018 - 19:53
Quick update. Looks like she will be starting at 50mg/M2 for both cisplatin and etoposide.
Sun, 05/27/2018 - 19:59
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.
Mon, 05/28/2018 - 07:49
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!
Mon, 05/28/2018 - 12:46
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.
Mon, 05/28/2018 - 17:04
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...
Mon, 05/28/2018 - 18:30
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.
Mon, 05/28/2018 - 22:26
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!
Mon, 05/28/2018 - 22:29
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...
Mon, 05/28/2018 - 22:42
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.
Tue, 05/29/2018 - 07:21
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.
Tue, 05/29/2018 - 09:46
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...
Tue, 05/29/2018 - 12:05
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.
Tue, 05/29/2018 - 12:29
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.
Tue, 05/29/2018 - 13:36
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?
Wed, 05/30/2018 - 10:58
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).
Wed, 05/30/2018 - 17:28
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.
Fri, 06/01/2018 - 10:07
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.
Wed, 06/06/2018 - 00:34
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.
Wed, 06/06/2018 - 12:34
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.
Wed, 06/06/2018 - 17:34
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.
Wed, 06/06/2018 - 18:37
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.
Thu, 06/07/2018 - 09:14
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.
Thu, 06/07/2018 - 09:18
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.
Fri, 06/08/2018 - 08:50
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
Fri, 06/08/2018 - 09:56
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:
Wife is ready to walk so off we go :). Thank you all for the support and wishing you all well in your continued journey.
Fri, 06/08/2018 - 11:10
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.
Fri, 06/08/2018 - 22:10
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.
Fri, 06/08/2018 - 22:25
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!