Tom Galli
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Posts posted by Tom Galli
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Oh my Susan! Such wonderful news! Do stay the course.
Tom
- Susan Cornett, LouT and Justin1970
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3
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Brian,
Welcome here. I’m a near 19 year survivor of late stage diagnosed NSCLC, squamous cell. I’ve had every form of treatment (several repeats) but immunotherapy. I’ve also interacted with lung cancer survivors for many years and know many who have taken the alternative therapy road.
I’m limited to responding on an iPhone because I’m visiting family, but I’ve blogged extensively on this site about alternative treatments. A short summary of my view might be: “if it feels good, do it but don’t expect it to be curative.
For more details on alternative medicine, you might read my Stay The Course blogs on the forum. I’d link them normallly but find the small screen a challenge to navigate.
Stay the course.
Tom
- brianinaustin and LouT
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2
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Oh my, I feel so badly about your father and his treatment delay. You are Canadian, and I’ve read about responsiveness issues with your National Health Service. Might it be time to engage your elected parliamentarian to expedite your father’s treatment?
No one in pain should be delayed treatment!
Stay the course.
Tom
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Carrie,
Splenic focus means a noted lesion in the spleen. If a biopsy of the lung tumor is performed and returns for cancer, all scan identified areas of the body are presumed to be the same type of cancer as found in the primary lung lesion. So no, a separate lung biopsy would not be required. As for the colon find, the SUV suggests possible metastatic activity. 15 mm refers to the size of the noted activity. I wouldn’t know if it is a polyp or an area of the colon itself that is measured as 15mm.
Stay the course.
Tom
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JPH,
The pain will decrease markedly after precision radiation starts. One caution on changing radiation oncologists, however. A treatment plan must be developed by the treating radiation oncologist and reviewed and approved by a physicist (to check safety) for each area of the body treated. Changing radiation oncologist starts the treatment plan development over. Doctors are reluctant to use treatment plans devised by other doctors and confirming physicists will almost certainly require a new plan on change of a doctor. So, I'd stay with your dad's radiation oncologist.
So I wouldn't advise a change to accelerate treatment for about a week.
Stay the course.
Tom
- Justin1970, JHP and LouT
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2
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1
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Carrie,
Hypermetabolic means an abnormal increase in metabolic rate. In the context of a PET scan, it means areas were noted with Standard Uptake Values greater than say 2.5. In context your report of "Hypermetabolic, irregular sub pleural nodules in the right upper lobe (SUV 5.8, 13mm", the words mean there is an abnormal area of increased metabolic activity at a 13mm nodule below the pleural area of the lung in the right lower lobe. This suggests malignancy but there are other causes of increased metabolic activity and a biopsy is needed to confirm cancer. And, yes, unfortunately, you are correct in your interpretation.
I looked a long time for a SUV chart and surprisingly didn't find one. I think it is because there is a lot of variation in SUV returns and many reasons besides metastatic cancer that can cause an elevated SUV. In my case, I've been NED since March 2007 but my PET scans still return a SUV of about 3.5 in an area corresponding to my thoracic surgery incisions. I have a chronic pain condition in this area due to too many incisions! Here is a blog I wrote sometime ago that explains PET scans and SUVs that might help.
Merry Christmas and Stay the Course.
Tom
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Joost,
Welcome here.
I Googled your trial information and learned you are enrolled in a Black Diamond Therapeutics drug trial for acquired resistance EGFR mutation in NSCLC, adenocarcinoma.
Early on in my treatment, I had a Targeted Therapy drug called Tarceva, but it was administered before scientists realized it only worked on a small percentage of EGFR adenocarcinoma patients. My NSCLC was squamous cell, and the only thing it did for me was give me skin and digestive issues. And again, since I had the drug very early on, there was nothing available to address the severe acne that invaded my face, head and neck.
The good news of you post however is the nodule reduction. That indicates the drug is working and if so, that is the best of news.
Merry Christmas to you and again welcome.
Stay the course.
Tom
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Loving Daughter,
There was a time in my treatment history when we investigated hospice options. My 4th line treatment was not working. We were despondent. I was comforted knowing I would be pain free and my wife would have assistance taking care of me. I recalled being told that morphine administered orally would control nausea. You might ask the hospice staff about that remedy.
I wish I had suggestions for you. I am a man of faith and relied on faith to sustain me during treatment. Perhaps that avenue is available. I would try and spend as much time with your dad as possible. Remind him of the good times. Try to get him to tell you stories of his childhood. You might help him contact distant family members and use the FaceTime feature of the phone to allow him to see folks.
I know this is a time of tremendous sadness but remember your dad is still with you. Relish every moment.
Stay the course.
Tom
- Justin1970, LouT and Pstar
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3
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JHP,
Precision radiation (CyberKnife, a form of SBRT) saved my life so I am a fan. Precision radiation is a technology dependent treatment. So I'd go to a place with the newest and most technology. Because of technology cost, the best radiation oncologists tend to congregate in hospitals with the best technology on hand.
I can answer your mapping question. Each area to receive precision radiation will require a mapping procedure. Mapping is performed using a special CT scan. In my case, I had an initial scan. Then the radiation oncologist and physicist devised my treatment plan and a second CT scan was administered to confirm the radiation path. So every lesion treated will require a separate mapping.
I also strongly recommend Lou's suggestion of consulting with a medical oncologist as soon as possible. It might be best to choose a radiation oncology hospital, then a radiation oncologist and a medical oncologist at the same hospital. These two disciplines will need to collaborate because your husband will require systemic treatment perhaps during and most certainly after radiotherapy.
Stay the course.
Tom
- Justin1970, JHP and LouT
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3
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Indeed, bring on the New Year and have a joyous Christmas while celebrating your stable scan.
Stay the course.
Tom
- LouT, Justin1970 and RJN
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3
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teresa.t,
Please contact our Registered Nurse Navigator Kristi (kgriffith@lungevity.org) and or our Lung Cancer Social Worker Angie (AJames@lungevity.org). Both are members of our Patient Services Department and stand ready to help you deal with our horrible disease.
Stay the course.
Tom
- LilyMir, Justin1970, LouT and 1 other
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4
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SATo,
Your's is a tough question: "did anyone have a bilobectomy?" The term means surgical removal of two lobes of a lung. It can be confusing because the left lung only has 2 lobes while the right has 3. So, it is not a commonly used term.
My right lung was removed in May of 2004 after a diagnosis in February. I had a very large tumor that completely filled the main stem bronchus but thankfully no other signs of disease. I had pre-surgical chemo radiation to shrink the tumor and allow the surgeon to make a complete resection. I was 54 at the time of surgery and my surgery was an open thoracotomy. While the lung was successfully removed, pre surgical chemo radiation affected suture healing that resulted in two subsequent thoracic surgeries and four stent procedures to correct. I had about a year's worth of surgery. My treatment plan was to have post surgical chemotherapy to address stray cells in my blood and lymphatic systems but follow-on surgical procedures canceled chemotherapy. Thus, I emerged from surgical mayhem into recurrence mayhem with three tumors found in my left (only) lung. Admittedly, mine is a rare case but surgical complications must be weighed for anyone regardless of age.
I've known survivors who've had thoracotomies in their late 70s and early 80s. You may want to read the string of posts by member Minh. She had a difficult surgical case. Here is her dialogue.
Each of us is different and predicting one's outcome based on another's experience is problematic. I know waiting is maddening but I think your best course is to learn the results of the biopsy before deciding on a treatment plan. There may be Targeted Therapy or Immunotherapy treatments, perhaps in concert with radiotherapy that might be effective but less invasive.
Stay the course.
Tom
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June,
So glad to hear you are on the mend. Thoracic surgery by any method is tough sledding. Keep at the spirometer and walk, walk and walk some more. I’d advise staying out of circulation during the holidays. A chest cold after thoracic surgery might land you back in the hospital. Have a joyous Christmas and I look forward to a NED New Year.
Stay the course.
Tom
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Claudia,
Simply marvelous!
Stay the course.
Tom
- LouT, Justin1970 and Claudia
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This link shows the schedule and has the Zoom connection information for LUNGevity's Virtual Meet-ups for December. Come join us.
Stay the course.
Tom
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Demmos,
Welcome here. Unfortunately, other that the article on Wikipedia about hypersensitivity pneumonitis that described its cause as inhaling molds, toxins or other lung irritants, I don't have a clue as to treatments.
Are you seeing a pulmonologist? This type of ailment is normally treated by this medical discipline.
Stay the course.
Tom
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Sharon,
Welcome here. I also hate the waiting associated with this disease. I was so disturbed by the waiting associated with scans and outcomes that I wrote a book about it: Scanziety!
I also had "pin point radiation" or SBRT that effectively treated a solid lung tumor in my left lung. This worked for me, in fact, it likely saved my life. I really hope you have my kind of outcome.
Stay the course.
Tom
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JHP,
The most common conventional pairing of chemotherapy for SCLC is Cisplatin and Etoposide. For those with extensive stage disease (your father) immunotherapy may be added. The question of delaying chemo or combination chemo (Cisplatin & Etoposide with Immunotherapy) is best answered by your father's medical oncologist.
You are right to characterize the danger of recurrence for SCLC. It is higher than all forms of NSCLC because small cell mutates very quickly. I have a link to Gould's essay The Median Isn't The Message in the last paragraph of this blog, here.
I don't have insight into clinical trials. I don't believe one's home state or treatment location factor into eligibility to participate. Moreover, I believe those accepted into trials receive medication and treatment without cost. Your dads treatment team ought to be able to advise you on your father's suitability for trial participation.
Stay the course.
Tom
- JHP, Justin1970 and LouT
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3
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JHP,
Oh my! There is so much to unpack about your dad's many symptoms.
Your first question as I understand it is about priority of treatment. Should a lung biopsy come before bone mets in the neck and leg? I side with addressing the bone mets first. Why? Precision radiation used to treat bone mets accomplishes two goals. It eliminates your dad's considerable pain and it reduces tumor burden. Precision radiation is very effective and will quickly resolve your dad's pain and improve his quality of life. Here is information about radiation used to treat lung cancer.
A leg biopsy result should not take 2 weeks to resolve. A pathologist will mount a tissue slide to a microscope and visually identify the type of cancer your father has. This result should be known in hours. A follow on laboratory biopsy might take 2 weeks to process but the pathologist examination will confirm a cancer diagnosis. Here is information on cancer biopsies. The follow-on biopsy is used to screen for Targeted Therapy or Immunotherapy treatment. The former treats a small percentage of adenocarcinoma non small cell lung cancer. The latter treats all types of lung cancer including small cell. Here is information on types of lung cancer. You should indeed press your medical team to perform a follow-on laboratory biopsy. Targeted Therapy and Immunotherapy are very effective systemic treatment methods. But conventional chemotherapy can be very effective also. Here is information on chemotherapy you might find useful.
Where should your dad have systemic treatment? My suggestion is to get a comprehensive diagnosis and maybe a treatment plan at well know treatment hospital but get systemic treatment (chemo including Targeted Therapy and Immunotherapy) from a treatment center close to home. Why? Systemic therapy is bound by national standards of care in the United States. That means everyone presenting with a specific type and stage of lung cancer undergoes the same treatment systemic therapies. So I'd get chemo (Targeted Therapy or Immunotherapy) close to home.
Clinical trials can be an important treatment resource. I wouldn't delay first line systemic treatment while you search for clinical trials and here is information that explains clinical trials.
Stay the course.
Tom
- JHP, LouT and Justin1970
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2
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1
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Lovingdaughter,
There is always hope!
And fortunately, today there is effective therapy for dealing with advanced stage lung cancer: Targeted Therapy and Immunotherapy. (I linked information on these treatments to our Lung Cancer 101 online Library) Moreover, new precision radiation technology is very effective in eliminating bone metastasis. Here is information on radiation used to treat lung cancer. A form of precision radiation (CyberKnife) saved my life in 2007. I was diagnosed with advanced stage lung cancer and failed 5 lines of treatment. But newly approved precision radiation to treat solid lung tumors saved the day and my life. So, there is always hope but in today's treatment environment hope is bolstered by effective treatment.
You are right in identifying your dad's next diagnostic step, a biopsy. Lung cancer is diagnosed by pathologist's examination of tissue on a microscope (called a histology exam), but most today have a follow-on laboratory biopsy to identify markers that point to Targeted Therapy and Immunotherapy. In the US, medical insurance often tries to block these follow on biopsy but persistent doctors make it happen. I wouldn't know the Canadian National Health policy on lung cancer laboratory biopsies but you need to inquire and cajole bureaucrats so I'd ask your dad's doctor about the follow on biopsy now.
You'll have questions and this is the place for answers. I do hope your dad's biopsy goes smoothly.
Welcome here and...
Stay the course.
Tom
- Izzy, Justin1970, LouT and 1 other
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4
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KF1,
In reviewing the PET results you provided, I did not see any indications of SUV or Standard Uptake Value. This value characterizes the extent of metastatic activity and is the key element in the PET scan. Here is information I wrote several years ago explaining the PET and what it shows and why.
When you meet with the oncologist, ensure you obtain SUV values for the areas reported.
Stay the course.
Tom
- Judy M2, Justin1970 and LouT
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3
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Wonderful!
Stay the course.
Tom
- LouT, Justin1970 and catlady91
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3
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Carrie,
My first question would be about the method the surgeon intends to use to obtain a biopsy. There are three (typically): aspirational needle; bronchoscopy, and surgical procedure. They are listed in ascending order of recovery trauma so I would prefer a needle biopsy if the nodule or tumor is large enough to get a reliable sample. A needle biopsy in the US is often performed by a interventional radiologist using a local anesthetic. Mine was a 30-minute procedure, but it failed to obtain enough material to reliably diagnose. My second biopsy attempt was performed by a pulmonologist using a flexible bronchoscope. I was anesthetized but not as severe as general anesthesia. And, this attempt also failed. My first successful biopsy was a combination procedure performed by my thoracic surgeon. He used a rigid bronchoscope to obtain a sample of the large tumor in my main stem bronchus and removed and biopsied lymph nodes around my lungs by making an incision at the base of my throat. I was under general anesthesia but was discharged when I recovered from anesthesia several hours after the procedure. This biopsy rendered my diagnosis: non small cell squamous cell lung cancer.
The second question is about the type of biopsy to be performed on recovered tissue. The way lung cancer is diagnosed is by a pathologist examination of tissue under a microscope. This is called a histology procedure and can be performed quickly. It was the only method available almost 19 years ago when I was diagnosed. Now there are follow-on laboratory analysis to check for the presence of mutations or markers to determine suitability for Targeted Therapy and or Immunotherapy. In this US, obtaining this form of analysis can involved a covered-procedure battle with one's medical insurance provider. I wouldn't know Canada's National Health System's view on follow-on biopsies. But, I personally believe this is important enough to engage to the point of demanding. Targeted Treatment and Immunotherapy have become first-line (first treatment) methods and can be very effective, and in the case of Immunotherapy, curative.
Again I don't know how one gets to interact with various specialities in your health system but if it were me, I'd be seeing a medical oncologist and a radiation oncologist shortly after my biopsy so I'd ask the surgeon who to recommend.
But the most important question to ask is about the possibility of surgery as a treatment method. I'm trying to recall your history and believe you told us you have 2 spiculated nodules in a single lobe of the lung and lymph node involvement. Depending on the extent of lymph node involvement, you might have the nodules or the entire lobe and affected lymph nodes removed as curative care. Moreover, you might be offered follow-on chemotherapy after surgery and if offered, I'd take it. I know so many early stage survivors treated surgically who've had recurrences after a "curative" surgical procedure. High recurrence probability is what make our disease so dangerous. So, I'd throw everything including the "kitchen sink" at it to dramatically improve the "one and done" treatment probability.
Stay the course.
Tom
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Holdonhope,
What causes low pulse ox levels? A short answer is lung cancer. When lung tissue becomes metastatic, it no longer supports respiration. So active and dead tumors drag on respiration efficiency. Here are some tips.
Have your dad's pulmonologist evaluate for supplemental oxygen, particularly when sleeping. Might your dad have sleep apnea? I do and have used a CPAP device since 1990, but 2 years ago, my GP gave me a special pulse ox reader that captured my O2 level while sleeping. Over the course of 3 nights, the results showed my O2 saturation dropping below 90 while sleeping, even while using the CPAP machine. Now I have and use an oxygen concentrator that is attached to my CPAP machine and am getting high quality sleep. I also don't feel the energy drag I once felt.
I wouldn't know if Keytruda causes respiration efficiency problems; that is a good question for the pulmonologist. I've not heard that it does.
Stay the course.
Tom
NED!
in MEMBER UPDATES
Posted
Happy NED Year Lily and my prayers for many more!
Stay the course.
Tom