Tom Galli
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Posts posted by Tom Galli
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KenHorse,
Wonderful!
Stay the course.
Tom
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I understand miserable. Any kind of chemotherapy is challenging and you are having combination chemotherapy (Cisplatin and Etoposide) plus Immunotherapy (Durvalumab). This is an emerging standard of care for Small Cell Lung Cancer (SCLC).
Your fractional radiation (30 daily treatments) should not add to your chemo side effect burden, but you will experience fatigue and it could be extreme fatigue starting in week 4. Radiation is very important because it is the tumor-killing component of treatment.
My chemotherapy (Taxol and Carboplatin) affected my Calcium and Magnesium blood levels also. My medical oncologist suggested I take oral supplements for both of these minerals. I continue taking Magnesium to this day. I'd ask your medical oncologist about oral supplements for these important minerals. I'm not sure I would ask for lower concentrations of chemo. SCLC is so dangerous because it often recurs and the conventional drugs sweep the blood and lymphatic systems of cancer cells. Immunotherapy trains your immune system to recognize cellular lung cancer and destroy it before it can form a tumor. You want to ensure every single cell is eliminated.
Our gold standard for successful treatment is the attainment of no evidence of disease (NED). Here is an explanation of various terms used to describe treatment effects. I hope your chemo-radiation results in a NED scan and I hope you surf the NED zone for a very long time. Combination chemotherapy is dramatically changing outcomes for SCLC.
Stay the course.
Tom
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Matthew,
Here are my thoughts on symptoms. The CT showing enlarged lymph nodes is concerning. Many things can cause enlarged lymph nodes including any kind of infection. But enlarged lymph nodes do not match up with shortness of breath. If there were tumors in the lung (easily shown by CT), that could be an explanation for shortness of breath. Many things can cause a change in speech. If vocal cords are swollen then that might explain breathing difficulty. Did the CT scan cover the neck? Ensure the PET scan covers the neck.
Night sweats can be symptomatic of respiration inefficiency caused by many things, including lung cancer. But again, I would assume the CT would show substantial tumors in the lung. Your father's symptoms may point to a respiratory infection. Did the blood test show elevated white blood cell counts?
Thus, the PET scan is a good choice. I wouldn't worry about the 2-week delay. I would worry about a 2-month delay. Ensure the PET scan covers the throat.
Stay the course.
Tom
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Oh my. When it rains, it pours. Let's hope for a dry spell!
Stay the course.
Tom
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My pain stems from intense muscle cramps: hands, feet, legs, and abdomen. The cramping is very painful and I lose the ability to move the affected area. I take 1000mg of Magnesium daily as a supplement (500mg AM & 500mg PM) prescribed by my medical oncologist. This results from a side effect of my chemotherapy (Taxol and Carboplatin).
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KenHorse,
Good to know things went well. Glad you are home all patched up.
Stay the course.
Tom
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Wendybird,
Welcome here.
To your questions, do EGFR mutations have a higher risk of recurrence? I wouldn't know for certain, but I've not read anything on adenocarcinoma mutations and risk of recurrence. All types of lung cancer have a high risk of recurrence compared to other forms of cancer. That is one reason our disease is so deadly. A 4-month scan interval is common for early-stage disease treated with surgery. The objective of frequent scans is to catch a recurrence early. I've not read anything about genetic types and post-treatment scanning frequency.
Do all recurrences automatically classify as Stage IV? Staging is an abbreviated way of explaining the extent of the disease at diagnosis. After diagnosis, we worry about recurrence, not one's stage after recurrence. Lung cancer staging is an important consideration at initial diagnosis. It points to the possibility of surgery as a treatment method. Multifocal disease (multiple tumors throughout the body) is generally not treated with surgery. The reason is the disease is already metastasizing and surgery won't stop metastatic activity. This requires systemic treatment: chemotherapy, and or chemotherapy and radiation (chemoradiation). Generally, lung cancer staging at I, II, or IIIA is evaluated for surgical treatment. There are exceptions.
Moreover, precision radiation (3D-CRT, IMRT and SBRT) is used, now more commonly, to treat multifocal (many tumors or nodules) disease alone or more typically as a combination therapy (chemoradiation) for late-stage (IIIB or IV) lung cancer. It is also used to treat single nodule or tumor recurrences and sometimes multifocal recurrent nodules or tumors.
Recurrence is a nightmare but we have effective ways of dealing with them now. The key is to catch recurrence early, hence frequent scans. Your mom will likely have 4-month scans for say 2 years, then the interval might be moved to twice a year. As a nearly 20-year survivor, I still get an annual scan. My doctor told me I'd have them for the rest of my life.
Your much more difficult questions are about hope and fear. I have opinions on these topics, and you can read my views here, here, here, and here. There is a long version on Amazon if you have the inclination.
Stay the course.
Tom
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Lonnie,
Welcome here.
We understand how your feel. We are all afraid. But my bottom line up front message is if I can live, so can you. Here and here are sumations of my diagnosed Stage IIIB treatment journey. The former is brief while the latter has all the details. I'm nearing 20 years of life after diagnosis and after treatments that nearly did me in. So keep you can live idea cemented forefront in your mind.
One of the most important diagnostic tests is a laboratory analysis of your tissue biopsy to determine suitability for Targeted Therapy and or Immunotherapy. These systemic treatment methods are game changers in lung cancer survival. I mention this testing because sometimes it is not performed. You should insist that it is. You may be a surgical candidate and surgery is our most effective curative method, but lung cancer is so very dangerous because it frequently recurs after curative treatment. One way to get ahead of recurrence is post-surgical chemotherapy. It is commonly performed after Stage II and III diagnosis but some I know did not have the post-surgical chemo and suffered a recurrence. You don't want to go down that path. If you have surgery, then avail yourself of the post-surgical chemo. It is inconvenient but recurrence is a nightmare!
Many effective treatments are now available to counter our beast. Multifocal precision radiation (treating 2 or more tumors in distant parts of the body) is now commonplace. I mention precision radiation becuase that is the treatment that led me to NED -- no evidence of disease. Once our world used cure to describe a good outcome but recurrence is so common that we've reset our language to accommodate reality.
You might check out blogs on our Forum for information and inspiration. I started writing about lung cancer on the suggestion of a therapist who treated me for depression associated with my treatment mayhem. He said it is useful to read what your thought or felt months ago to help understand what is happening now. I agree. Writing what you feel about uncertainty and fear gives you power over those feelings. Put the words down on paper. Here is an assemblage of my blogs over the years.
You've found your support group. There are many online resources for lung cancer these days including social media sites. But this is a safe space. It is now your safe space. We know how you feel. You fit right in.
Stay the course.
Tom
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KenHorse,
I do hope you are moving toward a resolution. This symptom and draining is a nightmare. I've got all my digits crossed.
Stay the course.
Tom
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Welcome Amy.
Stay the course.
Tom
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BBTN,
Continuing shortness of breath now 14 days after surgery but high O2 saturation and improvement with albuterol, I think it is a little early for symptoms to resolve. You might add a pulmonologist to your team for a more detailed appraisal. I'd report this symptom to your doctors and keep using albuterol, the nebulizer, and walking as much as possible.
Stay the course.
Tom
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Susan,
Do enjoy that cruise!
The annual scan milestone can be disconcerting, but I still get them annually. However, I no longer require the infused contrast so my low-dose CT is a piece of cake. Any time I can dodge an IV is a good time for me!
Stay the course and steer that ship to the best of times.
Tom
- Susan Cornett, catlady91, ChiMama and 1 other
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PK2,
Welcome here.
Sorry, I missed your first post. I don't have knowledge about cavitary versus noncavitary lesion outcomes. In fact, I had to do a little reading to determine what a cavitary lesion was. Here is what I found.
I'm not a physician so I can't offer you a definitive opinion but the cavitary nomenclature describes the shape or appearance of the lesion. I don't believe lesion shape or appearance in a scan affects outcomes. Although you don't mention it, you likely had a biopsy of the lesion because you report adenocarcinoma, and it would be my guess that your disease will be treated like adenocarcinoma regardless of how it looks in a scan.
So assuming the PET and MRI scans do not show any involvement, you may be considered an early find (Stage I or II) and a surgical or precision radiation candidate. Here is some information on lung cancer staging.
Susan makes a persuasive case. I'll add my evidence to hers. I was diagnosed with late-stage lung cancer nearly 20 years ago and I'm still here. We are all hoping for good news about your PET and MRI. Please let us know about those outcomes.
Stay the course.
Tom
- LovingWife, PK2, LouT and 1 other
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Kelvin,
Yes, I had radiation twice but to two slightly different locations in my chest and two different types of radiation.
My first-line treatment (chemoradiation) was 30 fractional radiation sessions focused on the bronchus of my right lung. My recurrence involved 3 tumors appearing in my left lung after surgery removed my right. Two of the three tumors were controlled by chemotherapy but the persistent one was finally dispatched with precision radiation (SBRT).
My radiation oncologist said the ability of precision radiation to minimize exposure to the right side of my chest made a second radiation treatment possible.
Stay the course.
Tom
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Sophia,
You should contact your surgeon's practice to have biomarker testing performed. Here is information on biomarker testing. The pathologist that performed the diagnosing histology is required to keep your tumor material sample for an extended period of time. Because your stage was IB, you may need to pay out of pocket for this additional testing but the cost is well worth the knowledge gained.
I'm not a fan of alternative treatments or therapy. Many claims are advertised, but no valid statistics justify the claims. I've been associated with this Forum since 2015. Before that, I had 6 years of involvement with an online lung cancer support group. In all that time, everyone who "invested" in alternate therapies paid a small fortune to die at an accelerated pace. You mention hyperbaric oxygen. I was offered an "opportunity" to participate in a clinical trial involving chemotherapy in a hyperbaric pressurized oxygen chamber. I didn't choose this trial and found out later the trial was halted early because every participant progressed during treatment.
When I was diagnosed in 2005, cancer sure-cure remedies were widely advertised on the Internet. Here , here, and here are examples.
The best way to ward off a recurrence of lung cancer is to abide by your screening scan schedule. If you get biomarker testing complete, you'll have another advantage. You'll know ahead of time what targeted therapy or immunotherapy agent will work best against your type of lung cancer. Moreover, radiation oncologists have precision radiation techniques to "sure kill" any type of lung cancer tumor when found early. That is why screening is so important. Finding a recurrence early gives you valid and effective options to deal with it.
Stay the course.
Tom
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BBTN,
I'm relieved you got through surgery.
I had all the symptoms you reported after my lung was removed. The crepitation or crackling sound made while breathing was unnerving but it resolved before I was discharged. Use the spirometer and it will accelerate its departure. Similarly, the small pneumothorax and emphysema symptoms were those I experience and my surgeon explained these are related to surgical-caused inflammation. Tips and tricks: keep using the spirometer and walk as much as you can, pushing yourself a little farther each day.
Now for your oncology visit--lung cancer is so very dangerous because of the frequency of recurrence after curative treatment. You've just had the most effective curative treatment. If you are offered chemotherapy, I advise you to take it. The big danger now is cancer cells might be circulating in your blood and lymphatic systems and post-surgical chemo takes them out.
Good to hear from you again.
Stay the course.
Tom
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Jenny,
Welcome here.
Progression after Targeted Therapy is a major pain. Am I correct in assuming your husband has adenocarcinoma with EGFR exon 19 deletions or exon 21 (L858R) substitution mutations? In the US, Osimertinib (Tagrisso) is used for first-line therapy with Stage IV diagnosis. I don't have actual experience with Tagrisso because my diagnosis was squamous cell and Targeted Therapies have not been developed for this form of lung cancer.
Let's call for the wisdom of the Forum. Can anyone provide experience with progression after Tagrisso?
Hang in there Jenny and stay the course.
Tom
My first ever surgery!!
in MEMBER UPDATES
Posted
RJN,
Adjuvant radiotherapy works! And, I'm a fan. If it is precision radiation (commonly known by 4-letter abbreviations like SBRT, IGRT, or IMRT), treatment will be a piece of cake, a walk in the park, or perhaps easy-peasy! (Not sure which British phrase means no pain, no strain). I doubt it would be fractional general radiation because it must be administered to 2 separate areas of your body. But, perhaps British medicine has adopted fractional general radiation for that purpose. This form of radiation involves daily treatments for say 6 weeks (M-F). Each day produces a fraction of the total dose. The first 3 weeks are no problem, but fatigue can set in during the last 3 weeks and becomes progressively more pronounced.
If the object is to kill cancer cells, then radiation is your tool. If it hits the cell, it kills it and I like sure kill therapy when it comes to dispatching cancer cells.
Stay the course.
Tom