Tom Galli
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Posts posted by Tom Galli
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Kim,
So very sorry to learn of your diagnosis! Welcome here.
As I understand it, you had an MRI in the diagnostic phase. That conforms with diagnostic protocol as I understand it. Fortunately, Tagrisso passes the blood-brain barrier. So If anything settles in your brain during treatment, the medication ought to control it. Tagresso is very effective for adenocarcinoma EGFR Exon 21 disease, and I pray for your good results.
I had a brain scan during diagnosis to clear involvement before I started treatment. I had an MRI about 5 years after diagnosis and then another 5 years later. So in my treatment experience, MRIs were not used frequently as a screening method.
I think a CT scan is quite capable of detecting new bone mets. But, let's hope nothing new happens and Tagresso does its thing. Here is more information on imaging used in lung cancer detection and screening.
Stay the course.
Tom
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Jacob,
I can definitely say your struggle to get physicians to pay attention to your mom's disease is definitely not normal. Please call Kristi Griffith at (214) 726-2112. Kristi is a Registered Nurse who works for the LUNGevity Foundation. Tell her I asked you to call her and see if she can move your mom's medical system.
Stay the course.
Tom
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Jeff,
I know how important hair is and therefore note your mom's concern but my hair grew back each time after 3 Taxol and Carboplatin infusion cycles.
Good news on the practical idea of removing her IV in between treatments. That would have driven me nuts. Let's hope the mid-treatment scan shows good results.
Stay the course.
Tom
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June,
I traveled your path but my recurrence was 3 tumors in my remaining lung after surgery. And this was well before immunotherapy was a thing. I had precision radiation to zap the recurrent disease and was "one and done" after that. So I'm a sure-kill precision radiation advocate!
I've found there is no noble cause fighting lung cancer. All the courage in the world is not going to change outcomes. You are doing the right thing. Precision radiation and a second opinion are the best next steps. You don't need courage; you've received cogent treatment recommendations. Hang in there and...
Stay the course.
Tom
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J
What is daily life like for me? To be precise, that answer should address two different periods: life after NED (no evidence of disease) from 2007 to COVID in 2019 and life after COVID because they are vastly different. Now, age is intersecting marginal pulmonary capacity.
When treatment ended in 2007, my wife and I embarked on an aggressive vacation experience. We both enjoy cruising and took a total of 7 transatlantic cruises to Europe, a Baltic Sea cruise, and a Mediterranean Sea cruise. Each had a substantial (at least 2 weeks) self-guided tour starting at the European port of arrival. We did Italy twice, Spain and Portugal, Ireland twice, England and Scotland, and the Baltic Sea Nations. My 3 thoracic surgeries caused significant chronic pain. On the first return transatlantic flight, I discovered airline cabin pressure had the effect of expanding my chest and I spent 9 hours in agony. But, we found Iceland and booked return air from European cities to spend a day or so in Iceland exploring before continuing home. This broke "up in the air" time into manageable painful periods. My physician introduced me to Lidocaine transdermal patches that when applied shortly before the flight would tamp down incision pain.
Walking around during these trips on level ground was easy. Climbing the "million" stairs to Edinburgh Castle or negotiating the elevation changes along the pathway to the Cliffs of Moher was difficult but I took my time.
When COVID hit, I confined myself to quarters. The last thing I wanted was a dangerous pulmonary virus. I walked my neighborhood but avoided neighbors and air travel, even masked and after all the vaccinations and boosters. I turned 70 with COVID's onset, and age now adversely intersects pulmonary capacity. Now, I'd likely not attempt to climb 3 flights of stairs let alone the steps to Edinburgh Castle. My daily life now is restricted to about a mile of walking around on level ground. We tried air travel twice and caught a respiratory bug (not COVID) each time and had a 10-day Caribbean cruise. I enjoyed 5 days before catching a shipboard malady, again not COVID. So COVID isolation has likely weakened my immune system to whatever is circulating throughout the population. When I catch a chest cold now, it puts me down for at least 3 weeks. Long periods of breathing in an N95 mask are extremely difficult. My traveling days are likely over.
You can private message me. Use the Forum private message function. But, our purpose is to provide open-source information on treatment and recovery and therefore encourage you to keep our dialogue in the open so others in the future can benefit from the information exchange. I learned in years of online message board discussions that cancer survivors seem to have the same questions.
Stay the course.
Tom
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J
I'm a survivor with 1 lung. Actually, less than 1 because of tumors that bloomed in my left lung after surgery do not support respiration. I'm nearing 20 years of life with significantly impaired respiration capacity, perhaps 30% of normal lung capacity. I don't live a 30% life, however!
I note your fitness routine. After surgery, there can be fitness in your life. You will need to find your stride but many of us do. One survivor on this forum, @Roz, is a self-described "gym rat". She's had 2 lobes removed and has active disease throughout her remaining lung tissue, yet she shows up and works out.
Welcome here. We don't have insight or information on thymoma but life after thoracic surgery is well within our scope.
Stay the course.
Tom
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Pstar,
Oh my, Dr. Gurtoo has a bent for run-on sentences sprinkled with obtuse language! I bet he dictated his impression and the transcription might be in error. Let's see if I understand it:
- solid 2cm right upper lobe nodule is unchanged in size ✔️
- behind this nodule, some increase in soft tissue thickening ✔️
- newly developed contiguous band of soft tissue discovered ✔️
- the rest, God only knows! This extended soft tissue discussion might be a transcription error! 😩
The good doctor seems confused and concerned or the poor transcriber couldn't understand the doctor's dictation. If this were my test, I'd ask for the scan to be re-read by another radiologist to untangle the soft tissue discussion. Put a message to this effect on your medical oncologist's portal or call and ask for a re-read. I had unclear or confusing scan reports cleared up when a second radiologist examined the scan.
Stay the course.
Tom
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Ken,
Negative for malignancy is the best of good news!
Stay the course.
Tom
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Well, I spent a couple of hours nosing around articles about chylothorax. While I'm acquainted with pleural effusions, I didn't know details about the fluid that causes them. My research was both interesting and ghoulish. I'd didn't know there was a connection between the lymphatic system and the blood system in such a direct manner.
Let's hope your chyle problem stops pronto. Your post highlights one of the benefits of a low-fat diet.
Stay the course.
Tom
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BJakobsson,
Oh my, your father has a tough row to hoe!
If small cell returns after the first treatment, it returns with a vengeance. The lesions along his spinal cord are troubling and difficult to arrest. Moreover, they are likely causing his difficulty with standing and walking. I'd say trying precision radiation (targeted radiation) to spinal lesions might be a way forward. Have his physicians administered a PET scan? The PET scan (information on a PET scan here) can identify metastatic activity all over his body. I think the results of a PET scan might give you insight into the extent of tumors and perhaps a decision on further treatment or best-supporting care.
I am sorry I don't have a lot of suggestions to offer. Small cell lung cancer is the most difficult of all lung cancers to treat.
Stay the course.
Tom
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Rebecca,
I think I understand. Your PDL is 1 and therefore your doctor believes he needs to pair Keytruda with the conventional drugs Taxol and Carboplatin. Then, continue Keytruda as a maintenance therapy. Others with low PDL profiles have had this same treatment with success, but while Taxol and Carboplatin can be very effective, they can cause troubling side effects. However, one of the principal effects of these drugs is killing cancer. So much of lung cancer treatment is accepting the good while tolerating the bad.
You are right. There is no way to know without moving forward with this combination chemotherapy treatment, but all the side effects should present after the first infusion so you will quickly know if you can tolerate this combination therapy.
Of course, you are right. No one wants to be a burden on family but fairness cuts both ways. I believe it is fair that you have a chance for extended life. When I embarked on treatment almost 19 years ago, all I had was a chance. I've done a lot of living with that chance.
Stay the course.
Tom
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LvingWife,
I'm glad you cleared the naturopath's prescriptions with the oncologist. That is essential.
There is a lot of discussion about diet, what to eat, when to eat, and even if not to eat in the cancer community. When I was receiving chemotherapy, I recall my oncologist simplifying cancer nutrition by explaining I had an "eating in order". I had to have calories in order to replace cells that were being killed by chemotherapy.
Stay the course.
Tom
- LouT and LovingWife
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JHP,
The first 2 answers to your hypothetical question are practice methods in use today. Nucleotide targeting is not yet a treatment modality. I read the PubMed paper and that is the limit of my experience with nucleotides.
But, the most important information on your dad's treatment is the shrinkage of tumors reported in the first 6 months of treatment. This is worthy of celebration. The only reason I can think of for a change in treatment is progression and hopefully, that won't happen.
Stay the course.
Tom
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LovingWife,
Rikkie's suggestions about hope for a good outcome and taking time for yourself are good ones. These days, Stage IV disease in some presentations of lung cancer is treatable; some on immunotherapy have amazing results. I pray your husband's combination chemotherapy with immunotherapy is successful.
Suggestions? Has your husband considered having a port to ease the find-a-cooperating vein drama of infused chemotherapy? I had three 18-week cycles of infused chemotherapy and after the first cycle of treatments, my veins became uncooperative. A port is a simple outpatient surgical procedure that eliminated the drama of infused treatment. It will also work for blood draws. Here are suggestions I wrote down years ago for infused chemotherapy.
With combination chemotherapy, sometimes one has combination side effects. Your husband's conventional chemotherapy drugs carboplatin and pemetrexed are mostly well tolerated. Keytruda is also well tolerated. Sometimes, however, the combination is not. The best way of understanding side effects is by charting their onset and retreat. The side effects tend to repeat in nature and sequence after each infusion and knowing the onset can often allow starting mitigating medication before onset to hopefully nip the symptoms "in the bud." I found my chemo nurse to be the best person to discuss side effects and mitigation strategies. I saw my nurse for each infusion and my oncologist every 3 infusions, and the nurse answered my phone calls and email message.
These days, most medical practices have a practice portal that allows one to view test results. Pay attention to blood chemistry results in blood tests, especially to variances from normal. Red and white cell variances are expected but sometimes chemo affects blood salts like magnesium and sodium. When these fall below a certain level, muscle cramping can start and it can get pretty painful. It is normal to have a mid-cycle CT scan to assess the effectiveness of treatment. The most important thing we are looking for in his first test is the words no progression. If the report indicates tumors shrinking, this would be grand good news.
When immunotherapy works, it works really well. I know many survivors from LUNGevity who have about 2 years of Keytruda infusions and after that period, treatment is no longer needed. One's immune system takes over. Your husband will likely have 6 infusion cycles of combination chemo then carboplatin and pemetrexed are stopped and Keytruda continue for perhaps 2 years. We are aiming for NED--no evidence of disease. Cure is something very few of us ever attain but NED means a normal life expectancy is expected. Here is information on terms used to describe lung cancer treatment outcomes. To Rikkie's marathon point, lung cancer is so dangerous because it often recurs after a scan shows NED. Therefore, once your husband achieves NED, he will likely have scheduled CT screening scans for the rest of his life and hopefully, these scans continue to report NED as the finding. I was NED for 17 years and finally, my oncologist reported that I was cured and promptly retired!
Knowledge is power in our disease and this resource will help you understand our disease in all its presentations and treatment methods. I encourage you to read in. And, of course, one must master a strange new vocabulary, and this glossary will help. Our Foundation also has scheduled Zoom sessions for caregivers of lung cancer patients. Our next scheduled caregiver Zoom is Thursday, May 25th at 8 PM EDT. Contact our LUNGevity RN nurse navigator at kgriffith@lungevity.org to get connected to this Zoom. You both are in this for the long haul and tips and tricks learned from other caregivers might help you. Looking back on my treatment, I now realize my wife and caregiver had the harder row to hoe! Here is information on the many resources available in our LUNGevity Foundation. Give it a read.
There is life after lung cancer. If I can live, so can your husband. Immunotherapy works and faith and hope are good things.
Stay the course.
Tom
- Pstar, LilyMir and LovingWife
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Maryanne,
Welcome here
Oh my, a report of progression after starting a Targeted Therapy for Adenocarcinoma Met Skipping exon 14 is never good news, but there is another Targeted Therapy drug for your form of lung cancer: Tepotinib (Tepmetko®).
Karen's suggestion is a good one. Please email Kristi Griffith, RN (kgriffith@lungevity.org). Kristi is a Lung Cancer Nurse Navigator and she is available to explain alternate therapies that might be available to deal with this progression. You might also ask Kristi about our Lungevity Zoom schedule. We have one at 12 EDT on every Tuesday and this mixture of newly diagnosed with seasoned survivors might help you navigate uncertainty. Ask Kristi for the link in your email.
Karen is right. Don't go to panic.
Stay the course.
Tom
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Jeff,
Welcome here.
Seeing the radiation oncologist first while sorting out insurance problems was an elegant decision. So very sorry to learn about the chemo side effects, but the principal side effect is killing cancer cells and your mom's recipe of combination chemo (conventional drugs plus immunotherapy) works. There is every hope she'll achieve NED -- no evidence of disease, an outcome we all aim for.
Keep us updated and stay the course.
Tom
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Jacob,
Now that you've described the extent and location of your mom's tumors, I offer this path for your mother's care. Here is how I'd proceed.
- Surgeon: Based on the extent of your mom's disease, surgical treatment is likely not possible. But, if the surgeon is evaluating for a biopsy, then this consultation is useful.
- Radiation Oncologist (RO): This discipline can rapidly moderate your mother's pain with radiation. You ought to be able to make an appointment with a RO without a referral (Unless your mom's health insurance is an HMO). Any RO practicing at the University of Pittsburgh Medical Center (UPMC) will be able to deal with your mom's pain quickly without disturbing curative treatment. A RO need not wait for a biopsy to begin treatment so your mom can be scheduled for a biopsy, and in the dwell time for this procedure and designing a treatment plan, be seeing a RO for palliative treatment to reduce and perhaps eliminate pain.
- Biopsy: If the surgeon is not doing one, then an interventional radiologist can perform one. Again, this level of expertise is at UPMC.
- Medical Oncologist: This discipline will develop systemic treatment that your mom needs but biopsy results must be in hand before treatment design is performed. That is why a biopsy is so important. In reality, two biopsy procedures should be performed. A pathologist will look at tissue under a microscope (called a histology exam) to determine the type of lung cancer (each type responds to different systemic treatment). Then, the sample should be submitted for further analysis to determine if Targeted Therapy or Immunotherapy are possible methods. It is important to ensure your mom's treatment team performs both of these biopsies. Sometimes they don't do a lab biopsy.
So rather than a linear approach to diagnosis and treatment, I'd advocate a shotgun approach focused on eliminating pain as a priority measure. For help in arranging treatment for your mom, please contact Kristi Griffith, Lungevity's RN Nurse Navigator, at kgriffith@lungevity.org Provide your phone number and she'll call you.
Stay the course.
Tom
Probable chylothorax
in SURGERY
Posted
KenHorse,
When it rains it pours buckets, especially in Oregon! A scheduled chyle drain is a good approach.
Stay the course.
Tom