LouT
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Posts posted by LouT
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LilyMir,
Thanks for that insight. Having had relatives that employed it in the US it was intended to reduce side effects and provide comfort, but can be used during treatment that is "curative" in nature. I would consider "end of life" care under the heading of Hospice, but again, Canada may have different definitions.
Lou
- catlady91, Justin1970 and Tom Galli
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3
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Lovingdaughter1990,
We're so sorry to hear about your father's worsening condition. This disease is so tough on everybody involved; patient, family, and friends. The diagnostic process can often seem long and is sometimes maddening, but I honestly can't speak to Canada's healthcare system. When your father meets with the oncologist it would be wise to have another family member there, both to ask questions, and determine any alternative treatments available. You also need to speak to your dad and ask him what he wishes to do going forward. Yes, this is a difficult conversation but you want to ensure that his desires are being considered in any decision making. Your father and family are in my prayers.
Lou
- Tom Galli, Justin1970 and BridgetO
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3
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Justin,
We are not only here to learn about good scans and NED...we celebrate those posts because of our sincere desire for everyone to survive this disease. But make no mistake about it; we are as much here to provide support to our LC Family when things are tough, unpredictable, and downright bad. So, don't stop posting unless you need a break from it. We are speaking honestly when we say, "we are here for you.". No need for you to stop posting or worry about "bringing us down". Our thoughts and prayers remain with you during this difficult time.
Lou
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Catlady,
I meant that the disturbing symptoms would be treated and controlled. Palliative care can be applied to many illnesses and conditions.
Lou -
Of course you are concerned. Once we suffer from this disease we never really feel that we are "out of the woods" completely. I'm thrilled that so far nothing bad is showing up and my prayer is that nothing does and whatever discomfort she is having can be treated palliatively.
Lou
- Justin1970 and Tom Galli
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2
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Sonny,
Welcome to our forums. You're correct...there are no people I know of who would choose to be here. But, the good news is that this is a great place for you and your husband to get answers to questions, hear of other's experiences, and get support from people who understand the journey he is on. I too was diagnosed with NSCLC Squamous in April 2019. My treatment was purely surgical (stage 1a) and as of August 2022 I was still NED (No Evidence of Disease). There are folks here diagnosed with different cancer forms as well as stages at diagnosis. Please take a look below...get to learn all you can and always feel free to ask questions whenever you have them.
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Share all that you get below with your husband. He'll find a group that understands what he is going through.
Read a blog titles "10 Steps to Surviving Lung Cancer; From a Survivor" (click on the title). It was written by someone who was diagnosed at Stage 3, went to Stage 4 and today is considered cured 18 years after his diagnosis.
We also have an area for caregivers called, "Caregiver's Resource Center", and you may find it helpful as you support your husband through this disease.
Next is a great section of our Lungevity site titles "Lung Cancer 101" where there is a huge amount of information that can help you as you move forward from diagnosis to treatment, and then onward.
Last note...DO NOT LOOK TO DR. GOOGLE FOR OUTCOMES!!! There are many reasons for this; the first being the the prognosis cited are five-year averages that don't include the latest treatments and available tools used in fighting the disease. Next, each patient is different, their reaction to treatment, the cause of their cancer, the stage at diagnosis, etc...so stick with your medical team and never be afraid to get a second opinion. We have super people here who were told to "get their things in order", and many years later they are still living full and happy lives.
Learn all you can, get your husband involved here as well, and we look forward to helping you.
Lou
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Karen,
Stable is good, great in fact. Congrats and I look forward to more positive results in the future.
Lou
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Justin,
So sorry to hear this news. You've been putting up a great fight so far and I believe you can continue. Even if they can't cure it perhaps it could be treated like a chronic illness (like many on this forum live with). Just know that we are all with you and you are in our thoughts and prayers. Stay strong and take advantage of every tool they have for you. Your mom smartly said, "where there is life there is hope" and I believe that with all my heart. None of us know the final outcomes in our lives, but we can always have hope and that is a better way to live.
Lou
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I'm glad to hear that your father's treatment has started. Treatments can often be very tough on the patient and I've heard many folks here talk about adding a "Palliative Care Specialist" to the team. This person would monitor the treatment and help relieve side-effects that can often happen during the treatment course. Please speak to the lead physician about this. I've experienced a change in taste and it can be a terrible symptom to deal with. Please keep us updated.
Lou -
In 2010 I had surgery for colon cancer and for whatever reason during my hospital stay I "lost my sense of taste and smell". That's not to say I couldn't taste or smell anything, but all food tasted like metal coated in chemicals. All smells were the same, just stronger or weaker and the smell was horrible. The doctor told me he "never heard of it", but a smart nurse told me that she had the same thing happen as a result of the drugs she was given after similar surgery. The condition lasted around two more months (I realize yours has been longer as you are on the med continuously), but your symptoms sure sound like mine. My wife tried everything; my favorite ice cream (YUK!), a dish I loved (NOPE!), and anything to help me get food down. It just didn't work. I was put on acid inhibitors and over time (without any further treatment meds) the horrible taste began to fade and finally (about 3-4 months after the surgery) I was able to taste food again. The effects continued to improve slowly and finally I returned to "normal". Please speak to anyone on your medical team that will check into a way to reduce dose or look at other treatment options. Please don't accept anyone telling you that this doesn't happen. The FDA has an article containing data on "Taste Changes With Tagrisso".
I hope you get some help and relief. Most people don't realize how terrible a side-effect this can be for a patient. Please follow up and update us here.Lou
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Good Bro'
How heartbreaking it must be for you to see your brother go through this. Is Palliative Care involved? They look to ensure patient comfort (to the best of their ability possible) while the treatment plan is applied. Please keep us updated and know that you, your brother, and family are in our thoughts and prayers.
Lou
- LilyMir and Justin1970
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2
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Ariharry,
Sorry to hear about your grandfather's condition. Please take a look at our Caregiver Resource Center as there is information there that can help you in your role as someone looking out for a relative. Please let us know if there is some other information you may need.
Lou
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Javaroast,
Welcome to our forum. There are different articles available regarding the side-effects of Keytruda and vision is mentioned in some of them. I have not had this type of therapy so I cannot speak to it from experience. Perhaps another member can but in the meantime I believe you should discuss this with your doctor to determine the severity of the side-effect and any actions that can be taken to reduce it. It is good news to hear that the therapy is reducing the tumor and I pray that continues for you. Please remember to come back here and tell us what your doctor determines and the outcome.
Lou
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Kristin,
Welcome to our forums and I'm glad to hear that you have already looked around. This is a great place for you (and your husband) to come for support, hearing others experiences, as well as learning how to navigate this journey while avoiding the many pitfalls that can befall you. There are some things I would recommend to you:
- Share all that you get below with your husband. He'll find a group that understands what he is going through.
- Read a blog titles "10 Steps to Surviving Lung Cancer; From a Survivor" (click on the title). It was written by someone who was diagnosed at Stage 3, went to Stage 4 and today is considered cured 18 years after his diagnosis.
- We also have an area for caregivers called, "Caregiver's Resource Center", and you may find it helpful as you support your husband through this disease.
- Next is a great section of our Lungevity site titles "Lung Cancer 101" where there is a huge amount of information that can help you as you move forward from diagnosis to treatment, and then onward.
- Last note...DO NOT LOOK TO DR. GOOGLE FOR OUTCOMES!!! There are many reasons for this; the first being the the prognosis cited are five-year averages that don't include the latest treatments and available tools used in fighting the disease. Next, each patient is different, their reaction to treatment, the cause of their cancer, the stage at diagnosis, etc...so stick with your medical team and never be afraid to get a second opinion. We have super people here who were told to "get their things in order", and many years later they are still living full and happy lives.
So, stay strong, learn all you can about the disease, treatment, outcomes, and keep connected with like-minded folks.
Lou
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Ale,
Perhaps this article from Cleveland Clinic Journal of Medicine can help to put your mind at ease. Regardless of the area while contrast may improve some definition (such as border around a lesion), non-contrast would not totally miss a nodule or tumor unless it is so small regardless of having contrast or not. I hope this helps Cleveland Clinic Article. Please remember that even if a nodule is found that the majority of lung nodules are benign. Perhaps once you meet with your doctor you'll get more specific information that can help relieve your anxiety.
Lou
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Lily,
What great news!!! It just made my day.
Lou
- LilyMir, catlady91 and Justin1970
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2
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1
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Susan,
Congratulations on the great news. A nice way to close 2022 and begin 2023. Your story truly is one of hope.
Lou
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Hi Ale,
Sorry to hear that you are not feeling well. In order to help you out regarding how Lung Cancer is diagnosed you should read "Diagnosing Lung Cancer". It discusses the various tests needed to determine if someone has lung cancer or not. Meanwhile there were tests done in the USA to determine if contrast was significantly more accurate and non-contrast and the testing methodology and results can be found here. The conclusion they came to is that, except for vascular thrombosis, the results were almost the same.
In your case they are finding nothing there (which is great news for you). I'm a three-year lung cancer survivor and my oncologist had my last CT Scan done without contrast and when I asked if it was as accurate he assured me that while contrast may add some small additional detail it was more than adequate for my purpose.
You seem to have concerning symptoms and I would continue to follow up with your primary care doctor until you can get solid answers to account for your symptoms. Please update us here when you do that.
Lou
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You don't need to go through this alone...even with family we often need others of similar experience and some of that can be found here at Lungevity. Please take a look at some of our "Online Communities". There are virtual meetups, coaches, and of course our forums.
Lou
- Tom Galli, JHP and Justin1970
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3
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Brian,
You may also benefit from reading some of the information here on Lungevity. Click on Treatment Options. I hope this helps.
Lou
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Ale,
Hand in there my friend. Worry can't change the outcome of the test and until you know there is something wrong can only rob you of peace. I know that going through this is hard, but you can do it and if you need any other kinds of help then reach out for them. And you are added to my prayer list.
Lou
- AleHondaa, Justin1970, Judy M2 and 1 other
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4
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Italia,
Rikki is correct that we do not interpret scan summaries here, but even with your doctor on vacation there should be another associate covering for him. Please call the office as reading a scan summary can really be confusing and a scan can only show a mass or nodule. BTW, most nodules are benign and are usually watched to see if any activity (continued growth) warrants a biopsy or PET scan. For your own peace of mind please follow up with the doctor's office. Explain your situation and I believe you'll hear from the "covering doctor" regarding the test. Once you do that come back here and there are lots of folks that can answer questions regarding this journey from firsthand experience.
Lou
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My coaching is to stay with doctors you are comfortable with and confident in. Regarding your dad's pain. Please ensure that the lead doctor is aware of the issues and consider adding a "palliative care" professional to your medical team. They can monitor reactions to treatment side-effects and disease progress in order to counter and/or reduce them wherever possible. Many here have taken advantage of their services and had many good things to say.
Lou
- Justin1970, Judy M2 and JHP
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2
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1
New here and grieving
in INTRODUCE YOURSELF!
Posted
Welcome to our forums and we're glad you chose to post here. Grieving is not a simple process of "closure" or "accepting a passing", but a rather complex process that each of us goes through individually. Sure there are some similarities, but like so many things in life; we all travel that path individually. Feel free to post anything here including any questions you may have.
Additionally, you may find our "GRIEF" forum of interest. Most of the folks there are going through similar situations as yourself. It can be found here,
Lou