Jump to content


  • Content Count

  • Joined

  • Last visited

  • Days Won


Posts posted by GaryG

  1. HI Jack: I have experienced  swollen ankles/legs lately. Since I had a blood clot in my lung previously, my oncologist ordered a CT scan to  make sure I did not have a blood clot. Then there was a debate about Edema and at the end they decided I had cellulitis and put me on antibiotics. Not to alarm you but you better take it seriously and let your oncologist know. I was told I developed cellulitis from scratching. Cellulitis is to be taken very seriously. I wish you the best.  



  2. 1 hour ago, LexieCat said:

    There are a couple of schools of thought on this. For me, I'd rather have my oncologist take first crack at the imaging and report. For instance, the last CT report I got sounded like there was progression of the cancer. I would have been freaked out till I saw my oncologist, who told me he didn't interpret the image the same way the radiologist did--the oncologist wasn't at all persuaded there was any progression. 

    Sure, I think we should all be carefully reading over all our test reports, but for those of us who stress out over iffy or ambiguous reports, it might be best to let a pro review it first. 

    Just my experience. 


    I am very happy with my oncologist. Oncologists are human just like radiologists. They make mistakes too. However It is up to me to verify what any member of my medical team says. Oncologists  do not explain the radiologist report item by item.  I also review my blood work with the oncologist and keep track of any deficiencies. One PA told me that the most important number in the blood report is the kidney function while the oncologist favorite number is the hemoglobin  one.

    A new law was recently implemented mandating that all patient records must  be issued  to the patient and oncologists at the same time. After seeing the oncologist one day I received a phone call telling me to get on blood thinners right away. The radiologist saw blood clots in the lung that my oncologist did not. I am never taking that chance again. Of course we are all different and should do what we are comfortable with.


  3. Hi Deb: First of all congratulations on finding the error.  For those who rely faithfully on their medical team I will say get educated. Sometimes, they forget it is a matter of life and death and ignore the anxiety part of it.

    I changed my appointment with my oncologist to the day after I receive the radiologist report. I compare the report to the one from the previous scan and write down any questions. In the cancer center where I receive treatment , reports are always compared to previous ones. Maybe you should demand your medical team to do the same.

  4. Claudia: Congratulations and thanks for brightening up my day. It is interesting that you elected to stay on Keytruda. I would have done the same. My question then is did you ask the oncologist to take it every 6 weeks instead and are you taking it without a chemotherapy drug. Again I am very happy for you  and wish you stay NED for ever.

  5. Hi Deb: Needless to say I am very disappointed. My question though is  are there any plans for a biopsy? I  know there are a lot of efforts lately to produce an accurate  liquid blood biopsy for cancer but I lost track of that progress. It is very disappointing not being able to know with certainty if it is cancer or not. In any event, I hope and pray that you have the strength and will to succeed again. Tepotinib  looks very promising both for the response rate and the duration. Please make sure to post any news whenever you can and I wish you the best.

  6. Hi Rikki: Sorry to know about your diagnosis and pain. I am a 74 year old mail cancer patient so I can't help with your breast question. Our ladies on the site are certainly more qualified. One question though did you ask your oncologist about the pain and if so what was his reaction. Maybe you should remind him often and demand answers.  Are you now under his care and if so are you receiving radiation/chemo/immunotherapy and if so what type? Answering these questions might help us formulate an answer. I wish you the best.

  7. Hi Michelle: Sorry to hear about your Mom. Deciding on Hospice is always a difficult decision but in this case it is the best one. I have known from experience that cancer brings out the truth about family and friends and in many cases the truth really hurts. Personally I am glad to be part of your family as you have been always here sharing your wisdom and happy thoughts with all of us. For that I am very thankful. I hope your Mom is spared the suffering and that you have a piece of mind.

  8. Hi Deb: This will be quite interesting and a first. I think your oncologist as well as everybody on Keytruda will learn a lot from your scans.   I have been on Keytruda for 10 months now but noticed more side effects like being tired and sleepy for weeks, not to mention swollen ankles, head aches  and loss of appetite, non of which is serious enough to make me stop treatment. Needless to say your scan is of great interest to me so I am anxiously waiting.

    Meanwhile, good vibes, happy thoughts and plenty of prayers are heading your way and I hope your scans are clean this time and forever.  Please make sure to post the results as well as  the oncologist  findings. All the best always.

  9. If one has to guess, your oncologist might wait till the next scan before arriving to a conclusion. Scans change from one to the other for many reasons. For instance some oncologist are encouraged by growing cancer when the patient is on immunotherapy. Also a growing mass could be due to inflammation.

    Anyhow, arriving to a conclusion from reading one scan while one is under treatment is not accurate. Your oncologist might compare this scan to previous ones and have a completely different opinion.

  10. Welcome to our group. I am 74 years old and was diagnosed with stage IIIB lung cancer On May 2020. I have been receiving a combination of chemo and Immunotherapy we call triplet. Lexi did a great job describing  her treatment and quality of life and that very much negates the common misconception about cancer treatment. I am also enjoying a quality time and seeing positive results while being treated. You come to the right place to seek guidance and ask questions. Of course you have a way to go before you receive the details about your dad's diagnostics and that will determine the type of treatment he will receive. Make sure the doctors do a biomarker test to check for mutation.

    Nobody knows for sure (even the doctor) how many months your dad will live but as lung cancer patients,  we are a true testament  that beating the cancer is possible because many of us did it. All it takes is perseverance, hope and a good medical team.  I wish you the best.


  11. Tom: What's so sad about your post is the current state of affair  lung cancer . Imagine the benefits to every body should all these blogs, Facebook communities and non contributors all got together in one single setting to share experiences and help one another. Imagine the influence on Politicians, pharma and providers that will create. One can only hope.

  12. Hi Nikki and welcome to our blog. Sorry to hear about your brother. The only person who can  answer both your question is the hospice doctor. Morphine dose  given to patients  differs from one  to the other. I wish you the best.

  13. Hi Matt and welcome. Sorry about your Mom's diagnostics and hopefully the doctors will have the situation under control. First of all the good news is that the cancer is operable and that's the best solution for treating cancer. The question remains is why doesn't the doctor confirm exactly what type of cancer your Mom has after performing the biopsy?  Also do you know if they performed a biomarker test to look for mutation?    Granted the nodules are not very large but why the long wait (since November 2020) to do the second biopsy and MRI? It is good to be calm especially when you don't have all the facts but it is uncommon to wait this long unless she was receiving treatment. I wish you the best.

  14. Hi Deb: I have had it for 2 or 3 weeks and the doctor ordered an ultra sound to make sure it is not a blood clot. The problem is not in my calf but rather in my lower leg.

  15. Hi Heather: Welcome and sorry about your husband. It is difficult to make a reasonable comment unless one knows more details. Almost every hospital ha an online portal these days where the doctors describe in details the  type of cancer and the plan going forward.  Family members are normally allowed to  have access. I wish you the best.

  16. Hi Kristina: Glad you joined us. Like you I had two chocking experiences with cancer. Lung cancer for me and colon cancer for my first wife. Today I don't know which one  I abhor the most. I am glad Tagrisso is working for your husband and I hope it will lead him to be NED one day. I also hope that you get the upper hand on your breast cancer and enjoy a happy life with your children. I wish you the best.

  17. If my family is not there for me through bad times, then they are not my family.  Risking putting my family through suffering? Well sorry about the inconvenience but this is not about them.  It is not like I have decided to have cancer. As for the odds, as long as there is a glimmer of hope,  there is  a chance to beat the odds. That said, going through the cancer journey is a sure way of weeding out the caring from the uncaring, the true friend from the false one and a  close family member from a non family member.   

  18. Tom (TJM): Yes Keytruda is used on high and low PDL-1 levels but the caveat here "in conjunction with other drugs. Yet the jury is still out  on the effectiveness of immunotherapy in general for the long run.  I asked that same question of my oncologist and some prefer it to target therapy and radiation. The next few years will shed more lights and hopefully they will be bright.

  • Create New...