Husband's journey with NSCLC - Squamous Cell Carcinoma 3B

[snappy]

67 year old male @ diagnosis

smoked 45+ yrs - Quit 2002

NSCLC - Squamous Cell Carcinoma

Chemo and Radiation Treatments together

Allergic reactions to Taxol and Taxotere.

This is long but I don’t know where to edit it at, 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.

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 (not enough for biopsy)

10/8/07 - Pulmo Dr. Cancer ruled out, but still could be. 10-22-07 AM - CTscan

10-31-07 - Pulmo Apptmt. From broncoscope Rare Pulmonary Infection: ACTINOMYCOSIS Medicine Augmentin XR 1000/62.5mg 2 in AM and 2 in PM (huge pills). About 6 weeks after starting the pills realized was only taking 2000 & not 4000 mg. Still cannot rule out cancer and have to watch the growth.

12/21/07 - CTscan. Growth had grown

1/10/08 - Needle Biopsy 1/16/08 - Heart Dr follow up on SOB but now thinks it is lungs.

1/17/08- Pulmo Dr called with biopsy results: Squamous Cell Carcinoma lung cancer (NSCLC)

1/21/08- Pulmo Dr followup and discussed things to date.

1/23/08 - Stress Test Nuclear - 1/24/08 - PetScan - 1/30/08 - Heart Scan setup.

Bummer! PetScan, 1/24, scheduled after Heart. Test stopped due misinfo.. He wanted the Pet done and so they agreed TM could still be walked on Tuesday AM 1/29 Go for PetScan find he has had the nuclear testing started 1/23 and so cannot do. 1/30/08- Reschedule Pet Scan. Cannot do the 1/29 finish TM. Heart Scan was to be 1/30 Cancelled ALL heart tests for now. 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 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, Both Drs claim this is not the SOB cause. Full PFT was 2005. Ocology Dr 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 & 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 & 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 - Angiogram done. No Heart Problem and not cause of sob. Cleared start Treatment -Brain Scan was ok 2/25/08 - Chemo & Radiation Begin (Mondays only Chemo - Radiation 5 days wk-expect to do 6 weeks)

Chemo, will be Carboplatin (paraplatin) and Pacitaxel (taxol)2/25/08 Allergic Reaction to Taxol. Stopped Taxol and finished with just Carbo once stable. 3/1/08 Chemo treatments now Carboplatin and Taxotere Saw Onc Dr. this week due to problems.

3/3/08 2nd Chemo Treatment Carbo and Taxotere and all went well. 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. CTScan & Radiology Dr indicated tumor shrinking.

3/17/08 3rd Chemo Carbo & Taxotere had allergic reaction .

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.

3/24/08 4th Chemo Carbo and Taxotere. Another allergic reaction. Now Joe recognizes a reaction very soon. First time was very frightening. Now something different 3/31/08 5th treatment should have originally been the last treatment in this series of six. Changed this week to VP-16 chemo drug on Mon, Tues and Wed. This was to be 1 week on and 2 weeks off. Oncologist indicated giving more treatments of Chemo on 4-21 but put hold on after all reports came in.

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.

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.

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.

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 stake 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. Don’t count on anything.

SURGEON Appointment changed to 4/14/08 now due to change in Pet Scan. ALSO Now going to add ANOTHER week of radiation which will be next week.

4/7/08 Pet Scan done & looking good, tumor shrinking

4/10/08 Called Oncology Dr due to very low WBC & Very low BP.

4/11/08 Pulmonary Dr. 4/14/08 and 4/30/08 Saw Surgeon

4/15/08 Brain Scan & was last Radiation Treatment.

4/17/08 Oncology Dr. WBC ok and can quit wearing the masks in public.

4/25/08 Have PFT setup to qualify for surgery.

Difficult weeks with nausea, fatigue, sweats/fever, coughing, bad headache, dizzy, insomnia, bowel problems, Low BP. Had to deal with delayed and changed appointments. To ER & in hospital few days. Felt it was more due to radiation than Chemo, at least as a combo. One week hardly slept at all. Few unexpected quick trips to doctor IV's, Blood. They were treating him aggressively. Dr & Surgeon agree Pet Scan looks good, Tumor was shrinking and Dr felt surgery was possible.

Surgery done 5-16-08. Removed RLL & middle lobe and some lymph nodes. All dead cells from treatment EXCEPT there was live cancer cell in one lymph node?? Will be having more chemo but not before 6 weeks after surgery. The hospital stay was longer than some. They said that often with radiation treatments like he had the recovery is slower. It took time to get the drainage tubes out. Just had to wait. Actually I felt safer with him in the hospital this time. I could not begin to cover everything but he did have numerous smaller problems after surgery. May 27, 2008 released from hospital.

Had several appointments with various doctors for while. I just cannot remember it all now. It was one problem after another. Not real big but enough to really slow down his progress. After surgery he didn’t get any sleep for couple days and then they could not get him to walk. About that time he started hallucinating and surgeon said was combo of pain meds and lack of sleep. That got fixed.

He had a real problem trying to eat. Ultimately that was fixed by the dentist and an adjustment to his upper denture. Everyone was at a loss why his mouth was so sore. Finally it cleared up and he was able to eat.

His BP has been an ongoing problem trying to regulate. His body has gone thru a lot and is adjusting to changes.

Emotional state I now understand becomes an important issue. I tried so to help in all ways I could to cover for him. Had to deal with anxiety. Of course we had personal issues building on top of this. Like the evening our air conditioning went out and it was around 110 degrees during the days.

If you the reader are the caregiver, watch this very closely. I had seen my husband get emotional thru the treatments. I totally missed it after the surgery. In talking with others I find that a lot runs thru their minds, as I am sure it does. I started taking anything I could from him that might create more stress. We were having family issues and I thought he was able to keep up. Not so. He fooled me. Watch your loved one. If you are the patient, ask for help in some way. Don’t try to be a real tough person or protector because what anyone goes thru with cancer has got to be just overwhelming. I only was an observer and I felt a lot of it.

Finally got report from a Ctscan and it looked good and no cancer. That was 7/3/08 and 7/4/08 was 7th week since surgery. 7/5/08 To ER per instruction of on call doctor at Pulmonary office. Suspect pneumonia and kept him to give anti’s by IV. Allergic reaction to the 2nd one, clindamycin. Even broke out in rash and itching, plus. WBC is 2 and should be 10. Either pneumonia or other infection. Did Bone Marrow 7/9/08

7/7/08 Had finally got appointment at Heart Institute and had to cancel since in hospital. Many cancelled or hard to get appointments continued with us. We seriously were going to quit one doctor group but we may be working it out yet.

Did another CTScan in hospital stay and it also turned out to be good.

7/10/08 Released from Hospital

The first signs I have seen that may look like things are more under control and starting to recover, altho very slowly, was this Thursday, July 17, 2008. He saw Pulmonary Dr and next day the Oncologist. He is now getting Vitamin B12 shots monthly. He had a bone marrow test before released from hospital.

They never could confirm what the infection was. They stated it is easier to treat if they know because then they know just what antibiotics to use. It is cleared or clearing and that is good. He is sleeping with oxygen but that would probably have been anyway. He was suppose to use a C-pap and never could. His overnight o2 this past week has worked well.

This has been quite a journey and not easy. I just pray that the Pet Scan when done will be as good as the CTScans. I don’t know if any of this will help anyone. I know so much more than I did in January. It is unbelievable the number of patients going thru the oncologists office. All I can say is never give up. You never know. I will just update only major issues, if any. A support group like this is so helpful to get the answers to questions and especially when you start this journey knowing absolutely nothing about what you are about to encounter.. Often so much of fear is just ‘not knowing’. Thank you all and God Bless All of You..

[snappy]

Not sure how and where I should update. I am just going to make this the second part of what is posted first in this thread.

Regular Scans seemed well until latter part of 2010. Near end of year broke out in rash and got to where it looked just awful, and itching. Various issues including Type II Diabetes. Severe nose bleeds a year apart, the last November 2010. Platelets and WBCs were low, and on and on.

9-14-2010 had the 2nd of 12 ‘planned’ IVIG infusions (Octagam) every 28 days for a year. He did not like how he felt after infusions and did not want more. Were needed because his WBCs and platelets were too low.

10-19-2010 Routine PetScan . Saw Oncologist 11-4-2010. Scan shows activity in a couple lymph nodes. He wanted Joe to see his surgeon and if she could do biopsy to check if cancer. Only way to know for sure. Earliest appointment was 11-24-2010. Grrrr. There’s blood vien/arteries so near the spot if she were to hit a blood vien/artery, could bleed to death before could stop it. Prior radiation causes everything to stick together and harder to get thru as it toughens up, making it harder to work with. Both doctors highly suspect it is cancer.

He finally agreed with the Oncologist to do another IVIG infusion 11-9-2010. By that time he had developed an awful rash. He cancelled the infusion. No one really felt the infusions caused the rash but we did. They insisted that was not one of the reactions to the IVIG. That made all this more disturbing. We now have paperwork that states it does that, just rare. All Joe’s reactions are on the rare side. Joe’s hands were bothering him long before he really broke out all over. It was gradual and then suddenly got worse. We did not even realize it was serious when it first started. Joe described it like something crawling under his skin. He also got BAD headaches right after the infusions. I had a link but not sure if I can post links on this board. No one would see him when he tried to get an appointment for the rash. The point is this was an extreme event.

This rash became a big thing and got worse and worse before anything got it to clearing. The dermatologist finally wanted him on Prednisone but PCP said he could not without using insulin because Prednisone would raise Blood Sugar. Numerous appointments and several doctors with input. Frustrating to say the least. I won’t put any more of the details but it was an awful time. I share some of this for others just in case you ever have an experience and need to do some research to learn about it.

There was a recall of some of what was used 3 days after Joe's first infusion. The second infusion he had and then they recalled all that was used, 9 days after his infusion. Ultimately, the manufacturer has dropped out of providing it. Only took it off the second time as a precaution. Just the first time that they had discovered too many people having problems. Altho their problems were different than Joe's. Still makes you wonder. This was serious and long time clearing up.

His WBCs are looking good now. 12-2-2010 Oncologist told Joe he could do the ‘wait and see’ or start chemo. Since it most likely is the cancer, Joe chooses to do the chemo. They order another Petscan for the next day, 12-3-2010. Surprises me that they manage to get a Pet Scan for the very next day and yet all those weeks wasted before seeing the surgeon because we had to make our own appointment. GRRRRR! The PetScan had to be within 6 weeks of starting chemo and the October 19th one was too far back.

He started on Chemo (Navelbine) and Erbitux (cetuximab) and had an allergic reaction to Erbitux. That one would have caused a rash on the face. It won’t now but might have been a good one to use. Joe has the EGFR mutation.

The Dr was 'surprised' at the changes in the PetScan from October 19th to December 3rd. Now, the lung cancer has returned in ‘both’ lungs and the lymph nodes and spread to the lower lumbar in the bone/marrow. It is classified stage 4 terminal. He had 3 MRIs done also after the second scan. Thoracic spine, Lumbar spine and a Brain Scan. Brain was okay.

The pain in his back was so bad one night that the doctor got him started on radiation. Think that started January 10th. Five days a week for radiation. Chemo one day a week for 3 weeks and a Neulasta injection on week 3, and then off 14 days and another 3 week cycle. After 3 cycles will test again and see where we go from there.

January 20th and 21st no chemo or radiation as his WBCs (0.9) are very low. They had finally got good. I am spending quite a bit of time researching some cancer things. Appreciate any suggestions on anything I might do to hopefully help keep treatment to fight this disease. The shots he got Thursday and Friday were Neupogen. Today, January 24th WBCs are back up and treatment have resumed.

I mentioned the EGFR mutation because I thought maybe tarceva would be an option. At the last Oncology appointment the Dr did not know if he could use the pill since he had the allergic reaction to the Erbitux (cetuximab). I thought he was going to check but not sure. I have inquired on another site but cannot say that I understand what I have read yet. Still reading thru it though. Next appointment is Feb 10th but still will not be thru with the 3rd Chemo cycle. It will start this week and lacking the one missed last week.

I am confused as to whether the cancer is bones or bone marrow. Dr referred to it as bone but the test looks like it says bone marrow?

I know a lot more than our first time around. It seems it is always new things to learn. This has been mind boggling. I want to spend quality time with him and yet don’t want something to slip by that we should know about. I appreciate any input. I will watching and reading the NSCLC section.

[Annette]

Wow - I'm not the person to respond to all the technical information you posted - what a long journey you have been on. I will say that someone will come along and point you in the right direction, answer what you asked and generally offer the support and help you need.

I very quickly scanned through parts of your story - as I have only had 2 surgeries and have been lucky enough (knock on everything near) to not have any of the other treatments. A couple of things struck me that I wanted to comment on.

You are so very right - the person with cancer can't stop their mind from spinning - once you hear that horrible word it's non-stop and over the course of your journey I'm sure you noticed by now it's a roller coaster ride of emotions. Sometimes you can almost put the mind on hold and have a moments peace - other times there is just no stopping in. BUT - I believe the most important thing you wrote was that you noticed it. You felt it. You were there. You understood. I can't tell you how important it is to have someone just "get it." There is absolutely no explaining the feeling, the thought process, the horror, the life altering that occurs when that word becomes part of your life. You have found the perfect place to let go of some of the tension we know you are feeling. There are people on both sides here that have worked through the emotions - and believe it or not reading the posts here is a blessing - good and bad - I hope that somewhere along the way someone says what you need to make the next decision, next step, etc. Then you will see and understand and say something to the next person that comes along - if you can.

There was one other thing that you said that really struck me. You said that you were "only an observer" - and as someone who has cancer I thought - no way. You wrote too much, cared too much, became a piece of the fabric that has gone through so very much during your husbands battle. You are not just an observer - and we are here for you just as much as we are here for your husband. Because your strength is just as important in this battle - your insight into the battle may help the next caregiver or patient but it is so very important that I want to be the first one to say thank you for sharing -

Now, I hope someone with more knowledge than I have comes along and is able to answer your questions,

Annette.

[snappy]

Thank you Annette for your kind and encouraging words. I appreciate it.

[jaminkw]

Mary, I've had no surgery or radiation or any of the chemos your husband has been on. What I can relate to is have late stage cancer (mine IIIB) and having had side effects that no one in the onc field will acknowledge as relevant to the chemo. I had an ongoing debilitating eye issue when I was on Alminta and they would just say, well there isn't anything in the literature....My daughter is an RN and an onc at her hospital was the only one who recognized it and said he'd heard of it and it was related to the chemo affecting the mucus membranes. I'm telling you all this because I want you to know how much it helps to have someone anyone acknowledge what you already KNOW. Yes, what you already know. You and there and making the connections and seein the timing of events related to treatment. Trust yourself.

Hope you can get answers to your technical questions. Just remember, late stage cancer is not a death sentence. Good luck and don't forget to take care of yourself too.

Judy in KW

[snappy]

Thank you Katie and Judy for the posts. Judy, it sure is frustrating when you just know what causes something and no one will listen. Glad you finally got someone to listen to you. I have read so much and I know that this does not mean it is the end for my husband. On the other hand, I have to not get to relaxed in the event it would turn that way. Everyone is different. I know that. I just have to keep re-assuring my husband and not sure he is hearing me but will keep working on it. His positive attitude is important.

I have done a lot of research and am asking questions. I am learning a lot. I just have to be careful how I approach the Oncologist. We do have a good one and so I definitely want to ask questions and not tell him what should be done.

Thanks,

Mary

[markhenry115]

Katie and Judy thanks because I know its happen when something frustrating going with you !