Husband has NSCLC Squamous Cell Carcinoma, Stage 3B

maryaz · Last edited by maryaz on Thu Apr 03, 2008 12:29 am; edited 1 time in total

This is long but I don’t know where to edit it as, it all got us to where we are today. There were unnecessary delays in our opinion. My name is Mary and my husband, Joe, is the Patient with the cancer. We have been married almost 47 years. Joe's age is 67 and he smoked 45+ years. Quit smoking 2002

Prior health not too bad. 9/14/06 got Heart Stent for blockage. Plavix & aspirn since, until started cancer treatment. 9/7/07 at Heart Dr for heart symptoms. SOB, pains. X-ray was questionable. 9/14/07 - CTscan. Heart Dr referred to Pulmonary Dr re:'RLL mass with hemoptysis, weight loss, etc.RLL neoplasm by CT-need biopsy bronchoscope."

9/19/07 Pulmonary Dr (suspected Valley Fever) 10/2/07 Bronchoscope (didn't get enough for biopsy)
10/8/07- Pulmo Dr. Cancer ruled out so far, but still could be. 10-22-07 AM another CTscan see if any change
10/22/07 6:00 PM Pulmonary Dr called results from broncoscope. Infection, 6 months to clear up, do another CTscan in 6 weeks, and tell more next appointment. 10-31-07 Pulmo Apptmt. Rare Pulmonary Infection: Pulmonary ACTINOMYCOSIS. Medicine Augmentin XR 1000/62.5mg 2 in AM and 2 in PM. 6 weeks after starting the pills realized was only taking 2000 & not 4000 mg per day. Still cannot rule out cancer and have to watch the growth.

12/21/07 CTscan. Growth had grown. 12/27/07 PA. called to schedule needle biopsy thru back. Waited to talk Pulmo Dr 1/3/08 due to concerns about the biopsy procedure. 1/10/08 Needle Biopsy was done. 1/16/08 Heart Dr follow up on SOB but now thinks it is lungs. Heart Dr did scheduled heart Tests for 1/23 & 1/30.

1/17/08 Pulmo Dr called with biopsy results: Squamous Cell Carcinoma lung cancer (NSCLC). 1/21/08 Pulmo Dr apptmt was a followup and discussed things to date. 1/23/08 was to have Stress Test Nuclear, & then overnite monitor. 1/24/08 PetScan (set by Pulmo Dr). 1/30/08 Heart Scan setup.

Bummer! PetScan, 1/24, scheduled after Stress Test. Asked if ok having Stress Test day before Pet. Told yes. Couple hrs into Stress Test about to do TM find a pill was taken in AM that didn't realize shouldn't take. Test stopped. They wanted the Pet done and so they agreed TM could still be walked on Tuesday AM 1/29 (couldn't return on 24th). Go for PetScan and they soon find he has had the nuclear test started 1/23 and so cannot do Pet and have to wait till out of system. At this point we are overwhelmed, worried, frustrated, confused.and whatever.

1/30/08 Reschedule Pet Scan. Due to Pet Scan now told cannot do the 1/29 finish TM (after rx out of system) and the Heart Scan was to be 1/30. Just cancelled ALL heart tests for now. Needed the Pet Scan done. At first we expected the PetScan and then the Heart and back to Pulmo. Didn't happen. Delays & Mess!

2/1/08 Pulmo Dr. followup Pet scan results (called and had them faxed over) growth has grown from 4.2x3.3 cm to 5.5x3.5 cm & show in two of his lymph nodes on right also. Stage 3B. 2/4/08 Ocology Dr (apptm personally made by Pulmo Dr. only a Dr could call on Fri and appmt on Mon.) Both Drs agree no surgery, at this time, at least. Both claim this is not the SOB cause. They both think blocked artery? Full PFT was 2005. Ocology Dr said on 2/4 didn't want to wait much longer than 2-3 weeks to start Chemo. Both Drs seem to think same. Was told that cancer pain starts it doesn't stop. so far any pains come and go. Had been having pains and was concerned.

2/5/08 Bloodwork. 2/6/08 Radiology Dr. 2-7-08 Heart Stress Test. 2/8/08 Radiology (marking) AM and
Port put in PM. 2/12/08. Brain Scan. 2/14/08. Chemo Class. 2/15/08 Heart Dr AM & done but problem. Something on stress test. Did a couple tests today AND Angiogram

2/15/08 Radiology PM simulation was still done but now held off week for treatment. 2-18-08 Chemo & Radiation set back 'another week'. Grrrr. 2/18/08 Start Chemo POSTPONED FOR WEEK and Radiation also postponed for week. 2/18/08 Angiogram was done. No Heart Problem and not cause of SOB. Cleared start Treatment. 2/22/08 Saw Pulmo Dr. and he stopped the Augmentin XR since cancer treatments will be starting. 2/25/08 Brain Scan results were okay

2/25/08 First Chemo & Radiation Begin (Mondays only Chemo - Radiation 5 days wk) Chemo to be Carboplatin (paraplatin) and Pacitaxel (taxol). 2/25/08 Allergic Reaction to Taxol. Stopped Taxol and finished with just Carbo. Saw Onc Dr. this week due to problems.

3/3/08 2nd Chemo treatments was Carboplatin and Taxotere. 3/6/08 Called Oncology Dr due to problems and told to come to office. Seemed better by Saturday, 8th. 3/9/08 Called Dr on call (Sunday) and told go to ER. Stayed in hospital until Tuesday. Continued radiation while in hospital but no Chemo on March 10th. Did miss radiation due to too sick on March 7th.

3/17/08 3rd Treatment and had an allergic reaction to Taxotere. They wanted to try once more.
3/24/08 4th Treatment and had allergic reaction again to Taxotere. Will try something else March 31st. Now Joe recognizes a reaction very soon. First time was very frightening.

3/24/08 Radiologist talks encouraging and says tumor is shrinking and radiation doing its job. Then the Oncologists sounds more discouraging. Not exactly sure what that was about. I should have attended the appointment but didn't. He came home real down. Almost sounded like couldn't do surgery and yet the Dr set up an appointment and also the Pet Scan. Onc Dr talked like not much hope or at least way Joe took it.

Week of March 31st, was 'suppose' to be: Tues: Pet Scan. Wed. CTScan and Surgeon Apptmt. Thurs. Oncology Dr. Fri. Pulmonary Dr. NOTE: After talking to us, the girl at Pet place was calling Dr Friday 3-28 about scan being so soon, when Chemo not done yet. We didn't hear back until Monday afternoon. As of noon Sunday, started eating per Pet instructions.

The Ocologist has indicated they will be giving him more treatments of Chemo. Joe has several side effects and ultimately even took him to hospital. He thinks from radiation and they say no but the list says yes. Chemo nurses said they get blamed for everything. (grin). A good spot in all this is that my husband does like the nurses. He had a lot of coughing in the beginning and that is letting up. Radiation said that is the radiation working on the tumor like a good thing. Hardly coughs much anymore compared to first few weeks.

Today March 31st we have a new schedule. No Pet on April 1st and later in day Monday, found out could change diet, again. Starting March 31st Chemo will be the Carbo and VP-16 and now on Mon. Tues & Wed of this week and then again for 3 days starting April 21st. Pet Scan was moved to 4/7 with Oncology Dr Apptmt on 4/9 and not this week. Joe did do okay with his first new chemo treatment today. This week is the end of a 6 week radiation treatments. They have just changed the angle of the radiation. Joe is losing his voice now. Hope that does not last.

What an emotional ride this is. Original plan sounded like Thought treatments for 6 weeks, & retest. Never had a Bone Scan. They did say bone scan can even wait till after start treatment. Now it sounds like they will let the surgeon know about the Pet Scan after it is done and Joe will have seen the Surgeon this Wednesday.

This disease is something else and then with all the confusion on the appointments, sure has not done any of us any good. It seems my husband has less patience and now I have tried to deal with the phone calls unless it is where he has to describe how he is feeling, if sick. I think this is where we are at. It was a long day today. If and as I get more comfortable I will have questions.

These are people's lives at stack and often seems so unfair the way many are treated. I am not necessarily referring to us. I am learning to speak up. I guess that brings us to April 1st.

EDIT ON April 2nd 2008. SURGEON Appointment changed to 4/14/08. Called today and cancelled today's appointment due to change in Pet Scan.
ALSO Now going to add ANOTHER week of radiation which will be next week.
_________________
Mary

Husband is 67 year old Male
NSCLC - Squamous Cell Carcinoma
Chemo and Radiation Treatments together
Allergic reactions to Taxol and Taxotere.
The Story: http://www.cancerforums.net/about9079.html

pbj11 · Site Admin Joined: 12 May 2007 Posts: 822

Hello Mary and welcome finally!

I know you've been around and posted, but this is your first post describing what is happening in your husband's journey. This is a very caring community who will support you and share pretty down-to-earth information if we know or have gone though the same things.

Wow! You must be very tired yourself, as I was exhausted just reading all the ups/downs so far! You have been buffeting back and forth between tests, doctors, and re-scheduling. Rolling Eyes

I'm sure your husband is extremely tired from the radiation effects. That will take some time for him to bounce back. It's good to know the combo of chemo and radiation is working -- that is what it's all about! Shrinking!

I'm shocked that he had reactions to both taxol and taxotere. They did try putting him on steroids and extra benedryl for a few days before they tried each of them again I hope. Those allergic reactions are so frightening. We went through the taxol reaction, but my husband did okay with the taxotere.

Do let us know how he does with the voice loss you mentioned. Is the radiation close to the middle of his chest? I'm glad his cough is lessening, that is such a relief for him. Liking the nurses never hurts either! Wink

As far as the bone scan goes, the chemotherapy works on the whole body (not the brain), so it will knock out bone mets along with the lung tumor.

If this turns out that he can have surgery that will be fantastic news. Keep us posted on what happens with the surgeon visit.

Take care and fasten your seat belt for that bumpy ride. This is one of the most challenging things a person can go through in life and it's especially hard, as a spouse, to feel so helpless. Just try to be strong for him and you'll both do okay.

Best wishes,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

maryaz

Hello pbj11;
Thanks for the reply. This has been exhausting at times. Joe was starting to have a little less trouble with the radiation recently. Now they have angled it different this week and a few different things have bothered him. Doesn't seem too serious for now. The radiation was really hard on him the first few weeks.

He had the Carbo 5 times. One time he had the taxotere with it. This week he had it Mon, Tues & Wed with the VP-16. Now they are having him see the surgeon and another Pet Scan and CTscan. We just wonder was that enough chemo yet.

You asked if they gave him more drugs before changing the chemo. Maybe not with the Taxol but they sure did with the taxotere. I know they gave him different pre and post meds and worked with him. He had one taxotere okay but then ended up in the hospital and he was really sick by then. When he got back, after missing one chemo, he re-acted again but they worked with him for another one. He has gotten injections too. By your asking me, that might explain my questioning why they gave it to him a 2nd time when he had already reacted to it.

By time 3 Joe had the reaction spotted right away. Yes, very frightening the first time. Had no idea it was coming. The coughing up the blood and yuk was suppose to be a good thing. I am glad it is over too. Of course, we didn't know that at first and that was scary. Everything about this disease is scary, I think.

His voice was coming back and then going. On and off. I cannot tell you exactly where this is. I have the CTscan reports and can see the tatoos. It is in the right lower lobe. It is in a touchy area. He was so emotional at one point and when I found out how good this one nurse was, I felt much better. She sounds very uplifting. He actually would come home and smile when telling me about her.

You confirmed what I have been thinking that this is one of the most challenging things a person can go through. As for the surgery we were told from the beginning that only maybe could do surgeon and all depended on if the treatments do their job. We have been told the surgeon we were referred to is very good. Hope so. Not best personality I guess but just want the cancer gone.

I read some of your story yesterday. Sorry about your husband. What keeps you on the forum after that. Are you just one that is the type to continue to help others.

Thanks.
_________________
Mary

Husband is 67 year old Male
NSCLC - Squamous Cell Carcinoma
Chemo and Radiation Treatments together
Allergic reactions to Taxol and Taxotere.
The Story: http://www.cancerforums.net/about9079.html

pbj11 · Site Admin Joined: 12 May 2007 Posts: 822

Mary,

Let's hope that all the treatments do their job and your husband can have surgery.

They like to re-try the chemo with other pre-treatment drugs because it's hard to lose out on a particular type of proven chemo. They like to have as many options as possible. I have never heard of this severe of a reaction and it must have been horrible for you and your husband.

Ha! --- I have yet to see many great surgeons who had good bedside manners. I never cared about that either -- it was all about how good their hands and brains were.

I feel so bad for you going through this and remember these times well. It is frightening and takes so many twists and turns that you become emotionally exhausted. Just take the good days and hold them tight.

We're here whenever you need to talk.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

maryaz

I just made an edit to 'the story' as follows:
EDIT ON April 2nd 2008. SURGEON Appointment changed to 4/14/08. Called today and cancelled today's appointment due to change in Pet Scan.
ALSO Now going to add ANOTHER week of radiation which will be next week.

Are you saying that it is rare to have a reaction to Taxotere. The first time with the Taxol, he said he got all warm and very red face and they had to put o2 on him for about 30 minutes and heart racing.

I think it is important to be involved and if I found it to be very unusual to not be able to find a way to use the taxotere, then I might question the pre-meds. What you say sounds like why they tried taxotere AGAIN. That helped me to see why. I want to speak up if I feel I need to but I don't want to irritate anyone that is working for him.

Should the VP-16 be as good.

Thanks for the help.
_________________
Mary

Husband is 67 year old Male
NSCLC - Squamous Cell Carcinoma
Chemo and Radiation Treatments together
Allergic reactions to Taxol and Taxotere.
The Story: http://www.cancerforums.net/about9079.html

pbj11 · Site Admin Joined: 12 May 2007 Posts: 822

Hi Mary,

I thought you said he was coughing up blood as his reaction to the Taxol or Taxotere. I've never heard of that before. Both of those drugs are in the same family, so if a person is ultra sensitive to one, they may not be able to do the other. Allergic reactions to Taxol are fairly common.

I did make a mistake before -- my husband didn't have a Taxol reaction, he had a carboplatin reaction (but they are very similar symptoms). I'm sorry, I forget a lot of things lately. Rolling Eyes

I'm guessing that your husband just can't have either one of those as he is too allergic to them.

I don't know anything about VP-16. Sorry!

Best of luck with the new chemo.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

maryaz

I am not doing so well in the memory area myself lately. It is mostly due to overload of input. This stuff is tough.

Seriously, I want to clarify what he was told about the coughing. The coughing was considered a good thing, blood and all. It meant the radiation was working and that was bringing it on. The tumor was shrinking at the time. Actually it has shrunk as I have a CTscan report here that he just had done Wednesday. I know that is 'good' news. I have to watch that I don't get too excited and shot down with some unexpected news. I am positive in my thinking and it is great. We have a Pet Scan on Monday. I have had that explained to me today too. Rolling Eyes

It is no wonder I am somewhat stressed. We always seem to get the 'he said, she said' routine. Joe & I not knowing the difference don't know what to say. In brief, Pet Scan was setup and in talking to the techs at Pet place they said normally don't do at this point in treatment. Anyway we all call back and forth and find it is what they want. The tech explained that by Joe still having Radiation and Chemo that there are, or can be, 'false positives' show. I have assumed, since the Dr. confirmed with the Pet place that they want the scan, that they are looking to see if anything new. The Pet Tech said it would clearly show if any cancer in new areas.

Make sense to you? I was told all the above except for the 'why'. That is my reasoning in that my husband is seeing a surgeon next week.

He has been in bed all day today. Had a neulastra injection today and Radiation this AM. Last chemo was yesterday until April 21st. Pet Tech said not to do Radiation on Monday and he questioned Friday. He was iffy and I said my husband was sick and didn't want to go anyway. He feels nausea, but not vomiting and has diarreha. I have not seen him quite this way except for when he went to the hospital on 9th. We are not doing radiation tomorrow.

VP-16 is also referred to as Etoposide or these other names here. http://www.chemocare.com/bio/etoposide.asp

I do not know how to say these things briefly or I would shorten them.
_________________
Mary

Husband is 67 year old Male
NSCLC - Squamous Cell Carcinoma
Chemo and Radiation Treatments together
Allergic reactions to Taxol and Taxotere.
The Story: http://www.cancerforums.net/about9079.html

maryaz

I am still confusing myself sometimes where to post. I posted a little of this info in another topic but want to keep the story together. I guess if I post in this topic this becomes part of it. If and when we make it to 'surgery', I will start that as a Part 2.

Original plan was one day week chemo and 5 days a week radiation for 6 weeks. That would have all ended week ending April 4th. With having 3 allergic reactions to a chemo treatment, he had a different chemo med (VP-16) the first 3 days of week starting 3/31.. Due to being very ill at different times, he missed 3 radiation treatments, and in addition to making those up, they added more to the session. The 3 days he spent in hospital he got his radiation. 3 days he could not get out of bed to go. The new 3 day a week chemo was to be one week on and 2 weeks off. That was changed Thursday, the 10th, as all chemo is on hold for now.

At least the week of 7th he was not as sick as past weeks. They were treating him aggressively. He had a Pet Scan on Monday, 7th. He got a call from the Dr on Thursday to come right to the office. Turned out his WBC were way off on a Blood Test he had taken the day before (4-9). They re-tested and were better but needs even better. He was told to wear a mask and be extremely careful in public. Do not get sick. Last week it got scary as his BP was dropping. Grrr. Talk about a journey! Not fun. Going into this weekend is the first one that he is not real sick. He says it is because he is getting only the radiation now. The radiation caused most the problems but when combined with the chemo.

Monday the 14th he saw a surgeon. That was set up before the Pet Scan was set. However, a big plus is that on Thursday when he had to go in to the office about his WBC, the Dr told him the Pet Scan looked good, Tumor was shrinking and whatever it is with the lymph nodes Dr felt surgery is possible.

I have learned that I can hear one thing one day and it changes on the next day. Only for that reason am I putting this message out with caution. Still feeling some side effects from the chemo and/or radiation. Tolerable, I guess. Good news, Today, April 15th was the last day of Radiation Treatments. Actually got a certificate and balloons to bring home. That was a welcome surprise as he thought he had one more day.

The really good news, considering the disease we are discussing, is that if all stays well he can have surgery. That was very questionable in the beginning. Still need a PFT report but I think he should be able to pass that. Sure hope so. It is set for this coming Monday. He will still have to be very careful to not get sick. Surgery would probably be about 6 weeks away yet. Did have a Brain Scan today because of some headaches last week. As far as I can determine this is about the best news he can get. We are aware that they surgery is another journey in itself.

Thanks to everyone for the encouragements, responses and prayers.
_________________
Mary

Husband is 67 year old Male
NSCLC - Squamous Cell Carcinoma
Chemo and Radiation Treatments together
Allergic reactions to Taxol and Taxotere.
The Story: http://www.cancerforums.net/about9079.html

pbj11 · Site Admin Joined: 12 May 2007 Posts: 822

Mary,

I am so very happy to hear that surgery will be happening. That is the best possible thing for a lung cancer patient! You must be very excited.

Keep him healthy and those neulasta shots should be kicking in to raise his WBC.

Good for you two!! Please keep us updated.

You are in my thoughts and prayers.

Hugs,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

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