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Hi from Sweden


JamesB

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Just stumbled on this site and the reading and encouragement looks great. Just got home from doc today and was diagnosed with stage 4 Squamous cell. Have an egg sized tumor in bottom right lobe.Found out today that there were also 2 small spots that lit up on the pet scan.Another small spot was found in my colon. Like everyone else I guess I am in shock and surprised that it is this bad.I know I am lucky in that it has not shown up in my bones or other places.

Treatment plan is to start chemo and Immunotherapy  on Sept. 17th. I don't remember if they are going to do them both at the same time or separately. It's all overwhelming. I have felt fine only a cough since Feb. Still work and work out,  

Too add to my stress my younger sister who is my usual rock just had a couple of small strokes-she was on dialysis and survived breast cancer and a kidney transplant as well. They are going to take her off her ventilator on Saturday. It is all just too much.

I could use some hope.

Thanks,

James

 

 

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Hi, James,

Wow, a lot on your plate. I'm sorry about your diagnosis (I'm Stage IV, too, diagnosed and getting a second opinion before starting treatment, though my cancer is adenocarcinoma). We've got a few squamous people here, too--notably, Tom Galli, who will be along to greet you shortly. 

I'm really sorry about your sister, too--that's all a lot of loss to process at once. 

This is a great group--lots of collective experience, knowledge and support. Glad you found us.

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Hi James and welcome here.  I' m sorry to hear about your diagnosis, but glad you found us.  Let us know what questions you may have and how we can support you. I'm sorry also about your sister. As LexieCat sais, that's a lot of loss to process at once. Hang in there.

Bridget O

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James,

Welcome here.

I am the squamous cell guy Lexi referred to. Unfortunately, I’m away from my desktop computer and linking information is difficult on an iPhone.

Navigate to my profile. The select blogs, then go to page 3 of my blog Stay The Course and find “10 steps To Survive Lung Cancer from a Survivor.” You can also Google the words inside the quotation marks. Unfortunately, it is pretty widely read.

Bottom line up front, I’ve lived nearly 16-years since diagnosis so—if I can live, so can you.

I didn’t see anything in your introductory post indicating you had a biopsy. I assume you did because you identify Squamous Cell but you said you were starting combination chemo with immunotherapy. Did your biopsy include testing for PD-L1 expression? That is normally a lab test that takes a couple of weeks to process. The percent of PD-L1 expression is a predictor for immunotherapy efficacy. I’m not acquainted with Sweden’s Health Care system or methods but some in the US do not receive follow-on lab testing of biopsy material and this is so very important to predict how modern treatment methods will work.

So, how do you get through this? First, with our help. We are your support group! We are not physicians but I’d venture we have a monopoly on actual experienced-based lung cancer treatment. You’ll likely have side-effects and your doctors will prescribe medication to mitigate these, but we’ve already had the side effects and our “tips and tricks” might be very helpful. Indeed, this is the place to ask questions. For example, you might tell us the names of the drugs you will receive so we can alert you to our experience with the medications.

Given your sister’s unfortunate medical condition and your forthcoming treatment slugfest, you may find yourself depressed. I ignored my depression convinced I could power through almost anything and failed miserably. Tell family or close friends to keep a close eye on you for signs of depression and if you show signs, seek treatment. 

We have a Friday zoom session for survivors—you are one of those now! Our 12:30 p.m. Central Standard Time meeting is a convenient 7:30 p.m. Stockholm time. You are most welcome to join and meet us. Here is our zoom connection details: https://zoom.us/j/98137457405?pwd=NzZJTmR4OGdxZFF2VWNodnFDZXhGdz09  Meeting ID: 981 3745 7405; password: 255138

Stay the course.

Tom

 

 

 

 

Edited by Tom Galli
Corrected timezone differential
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Hi James, and welcome!  I really can't add much to what the folks above have written.  So sorry that you have so much thrown at you at once; I know it must be overwhelming.   Let us know how we can help. 

Best,

Susan

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Thanks so much to all of you for you replies.It means a lot to me to wake up today and find this support.

Tom,I read your steps and will try to apply them to my life.

I had the broncoscophy and it took 8 days to get the results.I asked the doc about testing for extra things and he said I didn't have any markers for it. Luckily my partner was with me as I am very hard of hearing and it was very difficult to hear the doctor at times.I have 2 hearing aids but also have Menieres which has destroyed most of it.

I should get a treatment plan in the mail today or Monday.When I know more about what I am getting I will let you know.

A question I have now which I of course forgot to ask the doctor was the 2 new small spots found in my lung on the pet scan.These didn't show up on the CT scan could they have popped up this quickly ? I had the ct scan about a month ago and the pet scan last week.

I am also concerned about my remaining hearing--Menieres may be an autoimmune disease.They know very little about it.I'm a bit worried about going totally deaf during treatment- I have talked to cochlear implant people about 3 years ago and we decided that I wasn't quite ready but when stress happens my hearing goes in the toilet as well.

The doctor told me that I was going to get the best treatment that was available and that they were going to take care of me. The system here seems very well organized and it's in a brand new building and the team seems very good at this early point. I am very lucky to be here with the Swedish health care instead of being in the USA which is home.

I know it's early to ask but I am retired but have a small Pilates studio where I used to see about 10-15 people a week.With covid it's down to about 6. Just got a new client.I'm wondering If I will be able to keep working during treatment? I have trained everyone really well and don't have to do any exercises just verbally instruct them.

As far as my sister goes-I am still in so much shock and pain.Maybe she will rally on Saturday, we are a tough bunch my family. I do have the support of a psychiatrist friend in NYC and have talked to her. I know I will make it through this and I so appreciate your support.

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CT scans do not "catch" every small nodule there might be in the lungs. I've had what I used to call "mystery nodules" that would appear on some scans and not show on others. The doctor told me that depending on the angle of the "slice" of the images, sometimes small nodules appear/disappear or slightly change in size from one scan to another. Did they light up on the PET scan? If not, they could just be scar tissue or something--most nodules people have in their lungs are not cancerous. 

I believe chemo/immunotherapy are usually given at the same time. For some people, chemo might go on for a shorter period of time--if you have a good response, at some point you might get only immunotherapy. I don't know a whole lot about the treatment protocols for squamous cell.

Either way, though, your immune system is likely to be compromised while you're undergoing treatment. That means that working directly with clients could be very risky for you. Sweden has, from what I understand, taken a "herd immunity" approach to the virus, so there might be a lot of people walking around with it (symptomatic or not). Discuss it with your doctor, but I don't think I'd want to take the chance.

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Thanks Lexicat!

The spots did light up on the pet scan. Very interesting to hear about how the ct scan picks them up or not.

I will ask my nurse or doc about working. Right now i wear a mask and the client does too. We clean like crazy at the end of a session.It's just one to one.I also can distance myself a bit.I'm not crazy about Sweden's approach to covid. Especially when I look at other Nordic countries. I wear a mask if I take public  transport and I see more people doing this. I ride my bike whenever I can. I'm not sure if I have to shut down how I will tell people. I'm thinking I might just say I have cancer without any more details and tell them I am doing the chemo. I know LC has such a stigma to it.

Thanks again for your support!

 

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James,

Be sure to tell your oncologist about your Menieres. Platinum-formulated chemotherapy drugs can cause hearing loss as a side-effect. These drugs include: Cisplatin and Carboplatin. Both of these are commonly used in lung cancer treatment.

Stay the course.

Tom

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Hi James,

I have NSCLC, squamous.  I was diagnosed last summer with stage III.  I went through 6 weeks of radiation with weekly chemo.  At the end of that I did immunotherapy every 2 weeks for 8 months until my CT scan showed increased activity at the same site.  I was never a candidate for surgery.  With my recurrence I am assuming I would now be called stage IV.  I am now doing chemo again along with a different immunotherapy drug (Keytruda) concurrently.  I have only had 1 treatment so far. 
 

Don’t lose hope!  There are so many treatment options out there.  As Tom always says, if he can live, so can you!  His story has and does give me so much hope!  He has the same cancer that we have and he is still alive and doing well 16 years later!  
 

So sorry about your sister.  I will be thinking about you on Saturday.  Please keep us updated.

Babs

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James,

I can see that you've met a lot of the family here and hopefully you see that there is a lot here for you in the way of experience, knowledge and support of any kind.  Please take Tom's advice on treating yourself emotionally because we all know (or have learned in my case) the effect that our emotions can have on our health and treatment outcomes.  So please stay in touch, ask any questions and share whatever you are comfortable with.  We'll be here.

Lou

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Thanks Lou for the tips and support!

They did not take the vent from my sister yesterday.She is on a round of antibiotics and they are going to decide on Monday. At least my older sister and my nieces and nephew got to be with her yesterday and they held the phone up so I could say something to her.She is still under sedation.Praying for a miracle.

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Hi James,

  Welcome !    Happy to see you've met some great folks here and have already found the forum to be helpful.   Please know there are many of us are long doing well despite what was a pretty grim diagnosis.  I'm happy to currently be a 5 1/2 year survivor with Stage IV NSCLC.  Click on my profile link to read my story.

  I wish you the very best and hope you'll soon have your treatment plan and know what is next.

  Take care ...

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  • 3 weeks later...
On 9/4/2020 at 3:36 PM, Tom Galli said:

James,

Be sure to tell your oncologist about your Menieres. Platinum-formulated chemotherapy drugs can cause hearing loss as a side-effect. These drugs include: Cisplatin and Carboplatin. Both of these are commonly used in lung cancer treatment.

Stay the course.

Tom

I'm getting hearing loss now Tom.Have phoned my doctor.Do you know if the hearing comes back after the drugs are stopped? Thanks!

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James,

That is a really tough answer and your existing Menieres malady complicates the picture.

My "Taxol toes" neuropathy was supposed to be short lived. It has been around 16 years and does not show signs of leaving. What I'm starting to understand is that doctors believed side-effect symptoms to be short lived because few of us lived long enough to complain about them. I wouldn't know how to begin to predict what happens after chemo, but I do hope chemo stops cancer and you have a long life runway ahead for you.

Stay the course.

Tom

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