It's been awhile (almost a year) since we did a roundtable "Where we at?"
Some of our number have died and others have received that wonderful "NED" news. Let us know where you are at, share encouragement, discouragement, and everything in between.
I'll go first. So far afatinib continues to work for me. I had blood drawn for T790M mutation testing and I'll get that result after my next CT mid November when we check on a new tiny tumour in my right lobe. I'm otherwise healthy, enjoying watching the online metastatic group grow with BC Cancer. Some of you will be seeing my ugly mug on billboards as part of the Lung Cancer Canada antistigma campaign. There is social media stuff too (checkout https://thewrongquestion.ca/ for the full deal. A few other irons in the fire...
And now over to you. Don't make me tag you. Actually I'm worried I might miss some one as this merry band has been growing by leaps and bounds as more people talk about lung cancer.
hear of your positive activities ... poster boy!
In my personal cancer journey, I've recently completed my radiation. As far as side effects ... so far, so good.
But I have no idea regarding the status of the tumour in my right lung. A CT scan is booked for December 29, and a consult on January 4. It would be great to start 2021
cancer-free, so fingers crossed. My next hurdle is a colonoscopy, booked for November 19. I'm a bit worried about that one, but - as Jorola posted - "It's not cancer 'til
the biopsy lady sings."
I'm hoping the "check-in" brings many positive and uplifting responses. For the ones that don't, this is a great place for support and caring.
It does seem like a long time before we get results from all that we've been through, but we (my husband and I) are thinking positive that the tumour is gone and all is well! I have changed my eating habits somewhat and will be eating much better going forward!
Happy Thanksgiving to all.
I continue to be healthy and hopefully cancer free. I am considered no evidence of disease but consistently monitored due to new densities always appearing on scans. Thankfully so far these have proved to be inflammation or radiation scars. I have learned that not all new findings are new tumours
To those that are newly diagnosed ,know that there is hope for successful treatment as I am 4 years post diagnosis and doing well. To those finished treatment I wish you continued good health and advise you to look forward not backwards as you can’t change what happened yesterday but you can ruin your tomorrow’s if you are living in the past.
So glad you gave us/me the nudge Angus to say hi and update everybody on our status (congrats on your walk ...love the pink tutu). I have been negligent in replying to all the responses I received from my last posting. I just could not find the words to describe how you all made me feel. I was humbled to say the least, and so happy that I was able to help some with telling you of my experiences with Breast and Lung Cancer. I really did appreciate all your heart felt words of encouragement, support and empathy...this is truly a group that every caregiver and patient can benefit from.
Now for my update, the short version. My news is not good news unfortunately. My lungs are full of cancer and my energy level is nil. I am now in a hospital bed in my home, still looking out over the lake, thankfully. I do get up and out in the late afternoon to join my husband for supper and a little TV time. I am on oxygen 24/7, morphine 12 hr., with boosts when needed, prednisone, and now unfortunately a nitro patch. Chest pains started a couple of days ago and shortness of breath is getting worse. Not too sure what is causing this, but I am not about to go to the hospital 90 mins away for a chest X-ray, and my nurse practitioner does not want me in a hospital. I have a DNR and I am now all signed up and ok’d for MAID. Each stage of “end of life” is more difficult, and if the breathing and the pain cannot be controlled, I know now that I can bring all that suffering to an end. Not only relief for me, but also for my loved ones having to watch me go through this.
I will continue to check in everyday to see how everybody is doing. Please know that I am sending love and support to you all as you continue on in this rollercoaster ride!
It’s been a pleasure! Cheers!
Bear1 I can relate. I have a colonoscopy "on hold" That was a very frank discussion about life expectancy and what would be done if we found something. The bloody diarrhea that triggered the discussion has cleared up - most likely a combination of hemorrhoids and my medication. And I have another scan end of November... Life of a lung cancer patient. The trick for me has been to find slices of life in the midst of all that.
MommyT I tried poles but I'm too much of a cross country skier. Glide just doesn't work with them. I'm trying to figure out what running gear looks like for the rain in Vancouver. Moderation and variety has been my eating mantra all my life. I do find myself putting a bit more effort into protein in my diet, primarily beans and nuts, but the pork tenderloin I picked up on sale has me salivating just writing about it.
Little Bud Sending you loving energy. You are showing us all how to live with grace and joy even as this disease ravages us. Thank you for the gifts you give. This is a hard road to walk but your example in having the hard and difficult conversation let us know that there can be serenity even in this.
So I know there are more of you out there. Last warning before I start tagging...
I’m currently stable, after 5 months on Gefitinib and another 7 on Tagrisso. Minimal side effects, and no symptoms at all from the cancer itself, so the whole thing feels a bit surreal sometimes. Still dealing with losing my husband. And dreading being stuck here for another Canadian winter, which can drive me to tears even without all the other stuff that’s happened this year. Taking lots of long walks and pondering the purchase of snow shoes.
More drugs which killed my smell and taste, lost 50 lbs , worst experience of my life . Lived on soups mostly. Now only down about 15 lbs. which is good, got rid of all the visceral fat. Cat scan and blood work 2 weeks ago are clear. Eating normally!
Tired of being tired ! My energy level is so low sometimes and I am sleeping 10-11 hrs a day, not solidly but still in bed. Started to work out at home, no gyms open, but that drains me. Does the fatigue stop at some point ? Thanks for listening.
Joy and woe are woven fine
A clothing for the soul divine
Under every grief and pine
Lays a joy with silken twine.
It is right it should be so
Man was meant for joy AND woe
And when this we surely know
Safely through the world we go.
~ Blake (with a few errors in the quoting I am sure)
BTW how do we create hyperlinks when we write each others names in these replies?
I was diagnosed in November 2019 with stage IV adenocarcinoma of the lung involving the brain, lung, adrenals, bone and liver. Joined a clinical trial and had several tests including a lung and liver biopsy. Results showed I was EGFR+ and started on a clinical trial with targeted therapy pills - a 3rd generation pill called Nazartinib. I was taking this pill for the last 6 months and shortly thereafter they added a inhibitor called Capmatinib.
My MRI scans have been stable until a week and a half ago. I have around 12 new unmeasurable lesions on the back on my brain. I am currently doing 10 rounds of whole brain radiation.
My CT scans for my lungs, pelvis, abdomen and liver are stable. I get scans every 2 months.
I have a bone scan appointment this week as I have a dull aching pulling feeling in my right middle rib cage area and it's been very persistent especially when trying to sleep. They looked at my previous scans and said they don't see what would be causing this as there has been no change. Guess I will see this week.
What I'm really upset about is there was a clinical note put on the portal when they checked my blood to see if I had the T790 mutation and I don't have it. The note said that a tissue biopsy would be preferred method. I was not asked to do a biopsy and I'm not happy with this. My oncologist put a note on my file stating that if I cancer progression at any time, the next line of treatment will be Chemotherapy. I will have a discussion about this with her on my next appointment at the end of this month.
I am terrified to get Chemo. I can't stop thinking about it and it's put me in a really emotional state. I asked the Clinical Nurse if a tissue sample is more accurate than blood and she said yes. I wonder if they don't want to do a biopsy because they are backlogged with more important procedures due to COVID. This is disheartening. I would rather get the biopsy and take the chance even if it comes back the same as the blood result. At least I would know I absolutely don't have the mutation.
That's what's been going with me. Just trying to live my life as though I don't have cancer. Other than all this I feel good and go for walks around some trails where I live and starting learning how to sketch (not good people!)
Hang in there everyone - you are never alone:) stay well.
As for chemo - hey, nobody can force you to take it. Just tell your doctor that it’s not an option, go to Plan B. I decided right at the start that I didn’t want chemo, for a couple of reasons: I didn’t want to spend a large part of whatever time I have left feeling sick and tired and watching my hair fall out; and also because I live alone, don’t have any family, so would have nobody to look after me if I was too sick and tired to go shopping, or cook meals, or whatever. So far, I haven’t had to make that choice, and hopefully you won’t have to either, but please don’t spend time worrying about it - it’s your decision, not your doctor’s!
Thanks for the reply. I too live alone and have no help which is one of the reasons I don't like the thought of chemo. When I was first diagnosed and before they had the results of my biopsies, I was slated to get chemo and immunotherapy. Two days before I was going for my first treatment I was told I had the mutation for a targeted therapy.
I will see what my oncologist says about the tissue biopsy. I would rather take pills any day than have needles and rat poison injected into my veins. I am scared of the after effects and how I will manage by myself. I wonder though, if I had to do chemo at some point, would they do another testing for the possibility of any new mutations so that I may have the option to switch back to a targeted therapy. Guess I'll find out at the end of this month.
Again, thank you for the reply and I wish you well.
So keep 'em coming...
I ran across this earlier today. Dave was and is a huge advocate for lung cancer patients and fitness in the Calgary area.
So that is another one of our group accounted for. Rayline , Nicky01 , Alexa , Daphne222 , Peanut123 , vic777 , PearlFran , Hope99 , tommycall , Dhenne , Fernando A , auntybevy ... That was a trip down memory lane. So many people... And I only went back about 6 months. I for one would love to hear how things are going for any of you. I know it's only a forum but we connect in a special way with fellow travelers on this road. I know there are more of you out there lurking. Just touch base with us. Don't make me beg. (Too late I think I already am.)
I was just checking on different posts and since I saw my name mentioned I feel like I should also touch base with everyone, thanks WestCoastSailor for giving me a nudge since I think this is exactly what I needed right now. As a lot of you know by now I was diagnosed with early stage lung cancer in July 2020, got my surgery September 17 the cancer was removed during a lobectomy along with the lymph nodes. During my follow up appointment on October 8 I received the wonderful news that I was NED ( no evidence of disease ) and no treatments needed, best news ever.
For a week before my appointment I had been having problems with my breeding and noticed an odd lump coming out in between my ribs on my back which was causing a lot of pain, lump which upon examination by the doctor I was told it was something that was very rare, I had developed a lung hernia and I would need surgery if it got worst which it did by the next day and I received a call telling me to get to the hospital for an emergency surgery. Surgery was done last Sunday morning and I am doing fairly well, just very tired and I find it a little harder this time around to get back on track but I was told that was to be expected after having two anesthesia and two surgeries in such a short time. Considering both surgeries I think I came through with flying colours, the first surgery for the lobectomy was so much better than what I was expecting and my recovery I think went very well, much better in fact than what I was expecting and what I had anticipated, the fact that I had a lung hernia thrown in the mix was just an odd thing to happen but being encouraged with a NED diagnostic earlier is giving me the get up and go to push forward to get back into shape. I learned today that the low white cells problem is back again after the second surgery but that too is something that will be easy enough to manage. All around I am confident to say that I am on my way to a full recovery. Of course there are moments of ups and down, places where your mind takes you after you are told you have cancer..... I think this is normal since I am still in the early stage of my second recovery and.......I can say the glass is still half full!! My next scan will be in January2021.
I had my second 3 month check-up a week or so ago. Basically the doctor said he sees some rough looking stuff on one side but he believes that it is scar tissue from my many radiation treatments. To be honest my doctor never gives me any sense of hope, he just drops his bomb and then off he goes. I am tired most of the time and part of my problem is that my back was fractured (I have osteoporosis ) several times from being on the tables for radiation, Ct scans, MRI's, whatever. I understand from my GP that they should have put me on a bone medication before treatment started but of course my doctor says that was't his job but my GP's!!!!!
So I guess ironically in terms of the lung cancer I'm not doing too bad, I do get out of breath if I do too much but basically its the side effects of the meds that have me in pain. As a result of the fractures I am on perch and oxycontin, heavy stuff. People worry about me getting addicted andI just laugh, I mean really at the moment what are my options?
Anyway, there you go Angus, a report from the troops.
I hope I’m not breaking any rules here by mentioning this!
my best wishes to you,
Thank you for the information Little Bud, I will look into it. I am on oxycontin and percosets for pain. As a matter of fact the palliative doctor wants me to switch to tylenol 3 and drop the percosets, I'm not so sure that is the way to go right now. Yes it is unfortunate that I don't seem to have a very good team. I have a friend who has been battling mouth cancer for almost 2 years (she is 85) and she just found out that she has a lump in her neck. I have been further bummed out hearing that news, I so hate cancer. I have lost so many family and friends to it, and these days I struggle to keep my spirits up.
To add to my stress the organization SPECTRUM that supplies the nurse and the PSW's has been absolutely horrible. They do not communicate properly to each other or to the patients. I recently had to cancel one of my PSW's because I needed urgent dental care, I called them well in advance and asked that they confirm the call-they did not confirm. Next thing you know they are calling my emergency number (my anxious son) and put him into a tizzy. They have done that 4 times since I started with them, one day it might really be an emergency and he won't respond-freaking idiots. They show up when they are cancelled, they call when they are cancelled, honestly they are horrid. I'm so upset that I just told them to cancel all Mondays-period. I called two different numbers, left the same message and boom, the pew phones me 10 mins ago to come tomorrow-OMG.
My nurse has started telling me my blood pressure is up-really, I wonder why? I even asked my palliative care doctor to stop sending the nurse as all she does is take my blood pressure. Actually she does more then that, like try to read my magazines, take personal phone calls while she sits on my couch with no mask, etc.
Anyway, thanks for listening, just having a bad day I guess.
Thank you WestCoastSailor for the nudge as I probably would have missed this important thread. (and even then I almost did) Sometimes I am not sure where to go to get back into the conversation so this was helpful.
I was diagnosed in January 2020 with two tumors (two different types of cancer and one that is a rare form found in less than 2% of all cancers). One was a stage 3 in the lower lobe and the other a stage 1 in the upper lobe of the right lung. I underwent chemotherapy and when they did a CT scan after final treatment, the good news was that the large stage 3 tumor had shrunk by at least 50% but they also discovered several blood clots in the lungs which were not there before. A symptom of the disease and the treatment, I was told and therefore put on a blood thinner and asked to undergo tests to check for clots in the legs.
Six months later, by the end of July, the treatments and the surgery by VATS were over. The inferior lobe was removed completely and the superior lobe was removed by two-thirds. I left the hospital after four days and had to return for another 5 days due to complications which were caused by a persistent air leak in the lung which led to severe swelling and discomfort. I believed it was referred to as subcutaneous emphysema.
I have since been told that there is no further evidence of disease and pathology reports of the lymph nodes removed from the lung are negative. I am on 6 month schedule for tests and follow-ups with my surgeon which brings me to next February. I am also waiting to be called for a colonoscopy and hoping that once again it is just hemorrhoids. I continue to be followed by my hematologist who announced the good news that all the clots in my lungs have since dissolved but (there is always that little..BUT.. 😆) they had discovered 1 clot in each leg in the last tests they had performed. I go back in December for more tests on the legs and hopefully to be told that these clots too have dissolved. However, they said not to worry about it so I took them literally and I am not worrying about it.
It has been a wicked year for many this year having to deal with cancer amidst this Covid virus but I hope for everyone that they may continue to strive to see the silver lining among the clouds. We are not alone on this journey.
Prayers and blessings to you all.
When you cannot control what’s happening, challenge yourself to control how you react to it. That is where your power is.
Those of us with lung cancer can feel very alone with our diagnosis so this is a place to come where others are facing or have faced the same feelings as you.
The first thing I want you to know is don’t give up hope, lung cancer treatment has advanced so much in the last 5 years. I was diagnosed and received successful treatment for stage 3 non small cell omg cancer 4 years ago. I am still followed with scans but today I have no active cancer and for that I am very grateful.
I will be thinking of you as you continue on with your diagnostic testing. This is a difficult time not knowing the extent of your diagnosis nor what the treatment will entail.
If I can be of support please don’t hesitate to contact me here to by private message.
Glad to see the thread of discussion. This is an overdue response. But thank God I am still fairly well after the third brain tumor resection in January 2020. Since it was a redo, i.e., resection at an old surgical site, wound healing was a bit of concern. Luckily I recovered reasonably well. Pathology report confirms that I am T790M positive, so the oncologist has prescribed Osimeritnib/Tagrisso since February to hopefully better control the brain metastasis.. I fell much less side effect such as dermatitis and mouth sore. However there are more invisible side effects such as leg cramps and numb toes. Oncologist says its aging and has nothing to do with Tagrisso. Traditional Chinese Medicine (TCM) practitioner, however, insists that it's Tagrisso related.. Something to do with liver and blood circulation deficiency...
Well, I am officially a cancer survivor six years after the first diagnosis, though I still need medical treatment to keep me alive and well. At least, I have survived the latest battle, right before COVID19 outbreak. Remain cautiously optimistic. Life goes on.
Let's stay connected.
I have found that drinking LOTS and LOTS of water really helps - I went from getting really bad cramps every night, to just getting the occasional twinge once a week or so. I hope this helps.
December would officially be six years of Mick being NED - no evidence of disease. He has continued to be plagued by the lung abscess which can leave him feeling very sick, fatigued and breathless. However, each time it pops it reduces in size and the symptoms improve and it takes longer before the abscess bugs him again.
He has developed a bit of a light but nagging cough over the last 2 months. He finally agreed to go to the doctor the other day. Sadly our beloved family doctor retired but we were fortunate enough to seem to find one who seem very capable of taking Mick and his challenges on. He is sending Mick for x-rays which we are trying to get done at a time when Mick is actually wake and the x-ray clinic is not full. I am hoping I can get him in tomorrow. Even if I have to get the clinic to call us on the cell while we wait outside. Everyone knows the covid cases are out of control here in Alberta.
Again, good to hear from all of you. Take care and warm wishes to everyone this Holiday Season! 🎄
I've been n denial for a while . I paused visiting this site, because I'm trying not to think of cancer. I stopped seeing/talking to my counselor because I'm tired talking about my feelings. I think I'm more emotionally exhausted. Seeing all your posts makes me feel bad as to why I'm feeling this way. I'm sorry for being a snob for a while. And I wish everyone well on your journey. Mine has been chaotic as you can tell from my post. Feeling insignificant for not being able to work. I can't even volunteer at the food bank anymore because of covid. I can't even donate money because we've been financially tight. I cant even be with my friends and my parents too. I feel like I'm just here, lost, twindling my thumb 😕. Now I'm venting. I'm sorry.
That's my update. I hope next one will be better. I'll be better. Everyone be fine.