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Diagnosed one year ago today
dreamweaver
63 Posts

Hi Folks.

Well one year ago I was diagnosed with having lung cancer, adenocarcinoma stage 3b in my left lung. I also had an acute pulmonary embolism in my right lung the Dr. said, but after getting my CT results it showed I had 2 acute pulmonary embolisms in my right lung.

Well, this wasn’t my first rodeo as I had RCC kidney cancer 30 years ago and had the left kidney and adrenal remove in London ON.

At the time I was more worried about the embolisms than the cancer. Maybe the word “acute” did it.

I had a PET scan in Hamilton and was told surgery was not an option. The cancer was in the upper lobe, and I never ever got an answer from any of the Doctors as to why they couldn’t remove it from the lung and treat the lymph nodes. I also had 2 anterior mediastinal lymph nodes largest being 11 mm.

So, I started chemo/radiation in March 2021. 10 treatments of chemo and 30 0f radiation. Carboplatin and Etoposide. I did have mild discomfort, but the radiation was the worse. Halfway through I had to walk with a walker, my throat and esophagus were very sore, and I started the magic mouthwash. Lost 35 lbs. and lost my very long hair.

After I completed this my doctor said I could start immunotherapy. I did have different radiologists give different opinions of my Ct scans. I had to have an iron transfusion, developed severe colitis which my Oncologist said was from the Durvalumab which had to be discontinued.

Right now, I am on Prednisone until Dec 20th. I did ask my doctor what the plan was after completing the prednisone twice now and he said there was no other plans just CT scans every 3 months.

When I first seen the doctor one of the first things, he said was I probably had 3 years to live, if I was lucky maybe 4. This year has gone by very quickly. The friends I have met here have been a great comfort and have shared some very important information and helped prepare me for the questions I should be asking the doctors. You know who you are…

Ask questions, get copies of your scans and blood work, check out the links for new treatments. If you feel like venting, we’re here to listen.

Merry Christmas everyone

Dianne

4 Replies
elle29
742 Posts

Very interested knowing about embolism too . I have been diagnosed MBC taking CKD 4-6 oral treatments scans every 3 months . The fatigue thing hit me so badly along with flooding in urine ring to bathroom . I wondered if it was a physiology thing bc meds make the body so dehydrated . They addressed the fatigues from blood 🩸 labs I get monthly . The Macrophages red blood cells were enlarged that caused the fatigue Told to take Vit B .
The Neutrophils were low . So repeat tests indicated I was still low . They reduced my anti cancer meds .

The last CT showed I had a deep vein clot in the groin a DVT .And Told if it moves could become Pulmonary Embolism .I was given a drug to dissolve this both drs said the body will take care of this .Are you on clot prevention drug ? I think it * was more to deal with anxieties .
I am to required to wear a medic alert bracelet as the drug causes bleeding 🩸 Did u feel anything Dianne ?
Asking how do I know I have an P-E ? I was told by Onco that I may be short of breath , the difference is, that it will not go away . I may feel pain .
2 times I could not breathe; the first I took Ventolin walked into Emerg . All checked out from blood tests . The Second I was eating not choking but throat closed up breathing was haulted tried relaxing staying calm . Parameds took me to Emerg . And the dr . did ECG , coming back normal , felt convinced the breathing was mimicking esopeghal Indigestion .

I just carry on , but the reality is that the DVT clot or Pulmonary Embolism is caused by cancer . My cancer lung 2 hot spots have successfully shrunk on the TP I am taking . {To make a long story short my first cancer removed was adénocarcinoma in another province removed no treatment but 5 follow up at Princess ) Wanting to move out here be with family one year shy .
8 year later had painful breast lump in onset of pandemic . It was removed ,surgically , saw Primary Medical Onco .& several scans , with later a sugar PET revealed those 2 hot lung spots . Now Treatment has shrunk those to a small changed form . I am hoping to be NED by Jan 2022.🥳
No one addressed the urinary fluids problem when I drink water going right through me trying to contain it from standing up from sitting . U said u had colitis ? Was this tested ? I have had urine checked , sometimes put on a drug . Now taking cranberry capsules . Sometimes it is like an urgency or flood myself embarrassing just a while after drinking fluids .
When I flew ✈️ back ,seats squishy on isle ,to move my legs & frequent washroom . Arriving home my legs had swollen significantly - one was like an elephant foot & leg could not tell where foot began . I layer down to sleep and all better the next days back to both being regular size . I definitely have fluid problems telling my GPO but not spoken seen my FP . 🤷‍♀️
A member here on CC said to to have electrolyte drinks .Your Treatment different from mine being on systemic Inhibitors to strop cancer growth using my own bone marrow . I did not get any scan copies but some blood lab reports for Hemoglobin cell levels . Because of low wbc levels happening . You said u had blood transfusions ? Was it bc of the strong toxic chemo treatment or radiation , side effect meds ?
Got to go , do self care , bc I have been off my feet legs laying down too long . And it’s a nice sunny blue sky day for family dinner bday celebrations .”Have a nice one Dianne . "

@dreamweaver

Congrats on the year. Those anniversaries get better as time goes on. At first they didn't mean much but it was the “50% make it to 17 months at your stage” one that got me. When I passed that I knew there was something good going on.

And then I got on the “Stats don't mean much” horse. Things are changing so quickly in the lung cancer treatment world. The recent CCS stats have seen a rise from 17% to 22% making it to five years with lung cancer. And keep in mind that stats lag behind reality. If numbers give you hope there it is.

Still we “live while dying.” I had somebody tell me today that I should be a poster child for how to die well. Gah was that a compliment? I'm not sure. But it was a reminder that I'm still here and that life is for enjoying.

Thanks for all the wonderful contributions that you make to the community here.

Angus

dreamweaver
63 Posts

@elle29 My Hematologist said I will have to take blood thinners for the rest of my life. He also said if the cancer doesn't kill me a cancer blood clot will…Yeah well so will a lot of other things. I did not get a blood transfusion I got an iron transfusion, it was a little hard on the stomach.

Well got snow today in my area, I am not fond of winter, I find the cold really bothers me now

Take care

Dianne

Laia
44 Posts

Diagnosed one year ago with lung cancer 3b. A major shock. Thought I had pneumonia again. I had a very difficult four months into treatment of what I called a triple cocktail. I have been on Immunotherapy and Pemetrexed since April. The tumour has shrunk about 70%. On Tuesday I meet with the oncologist to discuss Immunotherapy alone. I have never been told on the length of time I have. I want quality of life and the hope to see my grandchildren graduate and maybe marry. I pray for all of us on this journey. Merry Christmas,

laia

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