I am ashamed to say that I am enjoying your writing, until I remind myself you are actually experiencing all of this! Your knowledge and your humor will serve you well. My Mama, who I think you met, was the Medical oncology nurse/ chemo nurse at Medical College of Georgia. She always spoke of patients “good spirit” and believed it always served them well! I will leave you with one of her favorite quotes…”That which does not kill you, will only make you stronger”.
I am praying for continued good spirits and sending love to you and your girls🙏🏻😘🥰🙏🏻
Hey, you are really pushing through this! Best thing: You still have your sense of humor! Second best thing: You're going to have a Best Seller when this is all over! Think of all the money that's going to roll in. Can I still be your patient? I promise to keep you tip- top questioning your medical knowledge with all my bizarre symptoms.
At the rate you are going you are going to have your book done and published before I ever get mine edited. But you give me inspiration.
Question: Do you mind if I share this with my friend who is going through the same thing, only he being a little further advanced in his treatment by about two months? Or maybe I should share it with his wife first. Any illness, especially one so malignant, affects the entire family as you well know.
Anything that helps, I'm on it. I've been holding all my symptoms down until we meet again.
MD with stage 4B ovarian cancer. Right with you re Cisplatin. Had 7 courses with Taxol and the neuropathies are very real and long lasting. It will be a bad dream when it is over, and take longer to get back close to normal than you expect. The cancer tribe is a tribe nobody wants to join, but you know you are not alone when your membership comes up. Thinking of you and your family…
In early 1975, my 38 year old mother was diagnosed with leukemia and went into the Indiana University Med Center in Indianapolis. There was no cure at that time from Leukemia. It was a death sentence and she died a few weeks later. Her doctor at the time was Larry Einhorn, a 32-33 young man (recently hired as the first clinical oncologist at the Indiana University Med Center). He could not save her life from cancer but he did go on to revolutionize combination chemo therapy for testis cancer that included his work with cisplatin (cisplatin is mentioned in this article). Metastatic testis cancer was a death sentence in 1975. Today, it has a 95% survival rate and I believe still remains the most curable of all cancers. His work has saved the lives of 10s of thousands of young men around the world...including Lance Armstrong. His story with testis cancer and cisplatin research in the 1970s is a story of how individual ingenuity and persistence can make a huge difference in sustaining human life.
Beautifully written, and please maintain your humanity and sense of humor throughout this ordeal. You will prevail. I did. Same deal - Cisplatin and radiation following surgery to remove lymph nodes (cSCC). The radiation will eventually wreak havoc with your taste buds. Need calories? Meet your new best friend - Ensure Plus. Try a banana with the chocolate flavor. Also, grilled cheese seems to work. You’ll be surprised how quickly you bounce back after the treatment ends. Also, if it’s cSCC, check to see if you’re eligible for the adjuvant immunotherapy trial. Good luck. I’m almost two years post-treatment, retired and volunteering at the hospital infusion wing.
I only "know" you through your blog and your Twitter, but for what it's worth, will definitely pray for you as you go through this part of your journey.
I am thinking of you as well. I started daily radiation with weekly Cisplatin infusion December 19th, 2022. I had COVID for the first and only time in May of 2022. My only symptoms were swollen lymph nodes. Unfortunately the left lymph node never subsided. After a few months I took my PC doctors advice and had it looked at and was given my diagnosis of nasopharyngeal carcinoma in October. I’m fortunate to live in Houston, home of MD Anderson Cancer Center. The #1 cancer hospital in the world. 3 weeks in I can say the mouth sores are the worst side effects I’ve had so far. No taste, just constantly gargling with a salt water, baking soda solution. I can’t even taste the salt anymore so eating feels pointless. My wife keeps asking what I’d like to eat, I tell her it doesn’t matter , anything will work , just as long as I don’t have to get the PEC line.
Oh, my, we are chemoradiation brothers with the same start date! I gather MDA tries to avoid PEG tubes with these cancers (here at the Hutch they gently encourage them, and I can see why), and I am trying to hold out, as well, though I might regret that soon enough. It’s really striking how similar our stories are. These cancers (if yours is HPV+) take years/decades to brew, so the covid could not have “caused” it… but fanned the flames, maybe? There might be a case report to JAMA in the two of us, somewhere. In any case: great good luck to you getting through this process!
Hello there chemorad comrade. I’m hoping you are doing well. I had my 20th of 33 radiation treatments today. It also was the last of 3, holiday treatments. Although it’s really no holiday when you do 2 rad treatments in 1 day. The MDA clinic I use is a satellite clinic and closed on holidays. The main clinic in the Med center is always open but it’s a hassle so I chose this option.
My mouth sores seem bc to be what’s bothering me the most in my quest to keep the weight on. They scheduled a procedure to install a feeding tube but I actually gained 2 lbs this week, so it’s postponed for now. I credit the healiose mount rinse for making my mouth improve a little. I did have a setback last week though, my creatinine levels were higher than they like so we skipped last weeks chemo. This mornings labs showed no improvement after 2 fluid infusion sessions so they ended up reducing the Cisplatin dose by 30%. I hope things are going okay with you, know that I think about you often and look forward to reading your columns.
Thanks, Montie. We should be both closing in on our final week!
I had a weird little uptick in weight, too -- though the bottom fell out of that surprise quickly.
Still overall doing well, but will be writing soon if I can stop napping about how many naps I need to take!
I have a pet theory - not science, just hunch - that the long-term cost:benefit from giving up a little cisplatin in folks like us is probably minimal. If I end up with an awful neuropathy, I might be wishing I'd gotten your dose. I'm not sure if anyone has ever compared full dose cisplatin vs a lower dose in a proper trial in these highly responsive HPV+ cancers and I have my inner doubts that all this poison is really needed. I hope for your sake my theory is correct.
Your commentary is very helpful for us just now because our daughter-in-law in Boston started chemo today for breast cancer. It's probably different chemicals and regimen but having your thoughts and insights - and your artful way of talking about it all - is illuminating. Thanks.
Hi, Buzz. That's a kind offer, especially under the circumstances. My daughter-in-law is fortunate to live near Boston, and to be getting very good treatment at the Dana-Farber Cancer Institute. Treatment seems to be going as well as could be hoped.
The Tyson analogy fits, other than for the periodic table component of his name being misplaced. (Iron Mike).
Question: Besides the potential for increased oto, nephro, neuro -- toxicity, would the full dose q3week interval be any more intense, with regard to n/v? I wonder if the symptoms are any different whether you cross the toxic threshold by a little or a lot.
I would not be at all surprised if in a few years I’ll feel like the weekly program was inferior to the 3 big doses. We shall see. Maybe it will pan out. I will say that I had good enough veins for 4 infusions (the cisplatin is a vein killer among its many pleasing attributes) but now will get a PICC line to limit the pokes; I didn’t think of that as a sneaky benefit to 3 bolus doses. I do think the post-infusion nausea is more intense (they use bigger doses of the anti-emetic meds for that reason) and that is frankly terrifying to me right now! It’s somehow easier to face a couple hard days likely after each infusion than a hard 7-10 days.
Look up hyperimmune egg and cancer. You may find what I did, that many people taking hyperimmune egg have much reduced, or as in my case, almost zero side effects. But no one, including the oncologist who treated me, has zero interest in this. One could speculate on the reasons. I tend to think that almost all adults are just plain stupid. That is, unable or unwilling to learn new stuff, unless such stuff is delivered by a well paid professional.
I had several days of chemo brain, (lt a week) and the worst case of hiccoughs EVER --- Not a listed side effect, and it took the nurses about an hour to find a cure --- A shot of apple cider vinegar did the trick
My wife had 12 courses of oxaliplatin in 2019/2020. She is back on it late 2022. (appendiceal cancer) It has the same neuropathy side effects. She uses cold therapy mitts and socks during infusion to reduce the blood flow, and hence chemo delivery, to those areas. It has definitely helped reduce those side effects.
I went through this in 2018. Nothing prepares you for the fight. I coined the term Happy Warrior. Your attitude is the only thing you can control. Happy is your disposition. Warrior is your spiritual fighter. Try THC and CBD tinctures for nausea
I lost 53 lbs and needed a feeding tube. Be careful with Adivan and fentanyl patches as they are very addictive. I have one more appointment scheduled in June then I am clear. Suffered neurological issues and hearing loss as I do the weekly chemo. Good luck
Beautifully written, and please maintain your humanity and sense of humor throughout this ordeal. You will prevail. I did. Same deal - Cisplatin and radiation following surgery to remove lymph nodes (cSCC). The radiation will eventually wreak havoc with your taste buds. Need calories? Meet your new best friend - Ensure Plus. Try a banana with the chocolate flavor. Also, grilled cheese seems to work. You’ll be surprised how quickly you bounce back after the treatment ends. Also, if it’s cSCC, check to see if you’re eligible for the adjuvant immunotherapy trial. Good luck. I’m almost two years post-treatment, retired and volunteering at the hospital infusion wing.
Thanks for your post. There is a lot of cancer in my family (particularly maternal side).
When I went through chemo nearly 20 years ago (4 courses of adriomycin/Cytoplaxin) I found it impossible to avoid nausea, particularly the first few days after an infusion. That said, the sublingual anti-emetics work better than other therapies.
I also found drinking lots of water helped, and listening to my body. Sometimes I hankered after a nice steak--sure I was building the red blood cells up. My last chemo was delayed as my white blood cell count was too low. I researched and found that cooked tomatoes assist in rebuilding WBC. Sure enough, it worked very well.
One of my friends also going through the cancer journey contemporaneously with me is a doctor. Her point was that med school (at the time she matriculated) did not cover nutrition very well. I found various online sources to be quite helpful though one must check and double check. God speed!
Thank you so much. As a matter of fact I am HPV positive. I’m not sure how much longer they’ll put up with my pouting about the feeding tube. Over the last 5 or 6 days my mouth has really taken a turn for the worse. The only thing I can taste is salt and a bit of chocolate, which happens to be the flavor of my protein drink, I found fairlife the most tasteful. Other than that I flood with ice water. I’ve lost a little over 10 pounds in the last week or so and heard about it today from my rad doctor.
Tuesdays are my chemo days so I get the full treatment, labs, doctor visits chemo then radiation around 2 or so. Since the Mondays after Christmas and New Years are holidays I ended up choosing 2 rad treatments, am and pm, as opposed to driving into Houston to the main campus. I’m being treated at The Woodlands location, which is a norther suburb of Houston. Free parking as opposed to $15 at the Med center location. Good luck my friend, my thoughts are with you. If I hear of any miracle solutions to our problems you’ll be the first to know
I am ashamed to say that I am enjoying your writing, until I remind myself you are actually experiencing all of this! Your knowledge and your humor will serve you well. My Mama, who I think you met, was the Medical oncology nurse/ chemo nurse at Medical College of Georgia. She always spoke of patients “good spirit” and believed it always served them well! I will leave you with one of her favorite quotes…”That which does not kill you, will only make you stronger”.
I am praying for continued good spirits and sending love to you and your girls🙏🏻😘🥰🙏🏻
Hey, you are really pushing through this! Best thing: You still have your sense of humor! Second best thing: You're going to have a Best Seller when this is all over! Think of all the money that's going to roll in. Can I still be your patient? I promise to keep you tip- top questioning your medical knowledge with all my bizarre symptoms.
At the rate you are going you are going to have your book done and published before I ever get mine edited. But you give me inspiration.
Question: Do you mind if I share this with my friend who is going through the same thing, only he being a little further advanced in his treatment by about two months? Or maybe I should share it with his wife first. Any illness, especially one so malignant, affects the entire family as you well know.
Anything that helps, I'm on it. I've been holding all my symptoms down until we meet again.
Take care my friend, Connie
Thanks, Connie, and of course it is fine to share.
MD with stage 4B ovarian cancer. Right with you re Cisplatin. Had 7 courses with Taxol and the neuropathies are very real and long lasting. It will be a bad dream when it is over, and take longer to get back close to normal than you expect. The cancer tribe is a tribe nobody wants to join, but you know you are not alone when your membership comes up. Thinking of you and your family…
In early 1975, my 38 year old mother was diagnosed with leukemia and went into the Indiana University Med Center in Indianapolis. There was no cure at that time from Leukemia. It was a death sentence and she died a few weeks later. Her doctor at the time was Larry Einhorn, a 32-33 young man (recently hired as the first clinical oncologist at the Indiana University Med Center). He could not save her life from cancer but he did go on to revolutionize combination chemo therapy for testis cancer that included his work with cisplatin (cisplatin is mentioned in this article). Metastatic testis cancer was a death sentence in 1975. Today, it has a 95% survival rate and I believe still remains the most curable of all cancers. His work has saved the lives of 10s of thousands of young men around the world...including Lance Armstrong. His story with testis cancer and cisplatin research in the 1970s is a story of how individual ingenuity and persistence can make a huge difference in sustaining human life.
Beautifully written, and please maintain your humanity and sense of humor throughout this ordeal. You will prevail. I did. Same deal - Cisplatin and radiation following surgery to remove lymph nodes (cSCC). The radiation will eventually wreak havoc with your taste buds. Need calories? Meet your new best friend - Ensure Plus. Try a banana with the chocolate flavor. Also, grilled cheese seems to work. You’ll be surprised how quickly you bounce back after the treatment ends. Also, if it’s cSCC, check to see if you’re eligible for the adjuvant immunotherapy trial. Good luck. I’m almost two years post-treatment, retired and volunteering at the hospital infusion wing.
I only "know" you through your blog and your Twitter, but for what it's worth, will definitely pray for you as you go through this part of your journey.
I am thinking of you as well. I started daily radiation with weekly Cisplatin infusion December 19th, 2022. I had COVID for the first and only time in May of 2022. My only symptoms were swollen lymph nodes. Unfortunately the left lymph node never subsided. After a few months I took my PC doctors advice and had it looked at and was given my diagnosis of nasopharyngeal carcinoma in October. I’m fortunate to live in Houston, home of MD Anderson Cancer Center. The #1 cancer hospital in the world. 3 weeks in I can say the mouth sores are the worst side effects I’ve had so far. No taste, just constantly gargling with a salt water, baking soda solution. I can’t even taste the salt anymore so eating feels pointless. My wife keeps asking what I’d like to eat, I tell her it doesn’t matter , anything will work , just as long as I don’t have to get the PEC line.
Oh, my, we are chemoradiation brothers with the same start date! I gather MDA tries to avoid PEG tubes with these cancers (here at the Hutch they gently encourage them, and I can see why), and I am trying to hold out, as well, though I might regret that soon enough. It’s really striking how similar our stories are. These cancers (if yours is HPV+) take years/decades to brew, so the covid could not have “caused” it… but fanned the flames, maybe? There might be a case report to JAMA in the two of us, somewhere. In any case: great good luck to you getting through this process!
Hello there chemorad comrade. I’m hoping you are doing well. I had my 20th of 33 radiation treatments today. It also was the last of 3, holiday treatments. Although it’s really no holiday when you do 2 rad treatments in 1 day. The MDA clinic I use is a satellite clinic and closed on holidays. The main clinic in the Med center is always open but it’s a hassle so I chose this option.
My mouth sores seem bc to be what’s bothering me the most in my quest to keep the weight on. They scheduled a procedure to install a feeding tube but I actually gained 2 lbs this week, so it’s postponed for now. I credit the healiose mount rinse for making my mouth improve a little. I did have a setback last week though, my creatinine levels were higher than they like so we skipped last weeks chemo. This mornings labs showed no improvement after 2 fluid infusion sessions so they ended up reducing the Cisplatin dose by 30%. I hope things are going okay with you, know that I think about you often and look forward to reading your columns.
Regards,
Montie
Thanks, Montie. We should be both closing in on our final week!
I had a weird little uptick in weight, too -- though the bottom fell out of that surprise quickly.
Still overall doing well, but will be writing soon if I can stop napping about how many naps I need to take!
I have a pet theory - not science, just hunch - that the long-term cost:benefit from giving up a little cisplatin in folks like us is probably minimal. If I end up with an awful neuropathy, I might be wishing I'd gotten your dose. I'm not sure if anyone has ever compared full dose cisplatin vs a lower dose in a proper trial in these highly responsive HPV+ cancers and I have my inner doubts that all this poison is really needed. I hope for your sake my theory is correct.
Hey Buzz. Whit and I are thinking of you.
Your commentary is very helpful for us just now because our daughter-in-law in Boston started chemo today for breast cancer. It's probably different chemicals and regimen but having your thoughts and insights - and your artful way of talking about it all - is illuminating. Thanks.
Thank you, Nelson. That is big news indeed about your daughter-in-law. Do let me know if I can somehow help in any way.
Hi, Buzz. That's a kind offer, especially under the circumstances. My daughter-in-law is fortunate to live near Boston, and to be getting very good treatment at the Dana-Farber Cancer Institute. Treatment seems to be going as well as could be hoped.
The Tyson analogy fits, other than for the periodic table component of his name being misplaced. (Iron Mike).
Question: Besides the potential for increased oto, nephro, neuro -- toxicity, would the full dose q3week interval be any more intense, with regard to n/v? I wonder if the symptoms are any different whether you cross the toxic threshold by a little or a lot.
I would not be at all surprised if in a few years I’ll feel like the weekly program was inferior to the 3 big doses. We shall see. Maybe it will pan out. I will say that I had good enough veins for 4 infusions (the cisplatin is a vein killer among its many pleasing attributes) but now will get a PICC line to limit the pokes; I didn’t think of that as a sneaky benefit to 3 bolus doses. I do think the post-infusion nausea is more intense (they use bigger doses of the anti-emetic meds for that reason) and that is frankly terrifying to me right now! It’s somehow easier to face a couple hard days likely after each infusion than a hard 7-10 days.
Look up hyperimmune egg and cancer. You may find what I did, that many people taking hyperimmune egg have much reduced, or as in my case, almost zero side effects. But no one, including the oncologist who treated me, has zero interest in this. One could speculate on the reasons. I tend to think that almost all adults are just plain stupid. That is, unable or unwilling to learn new stuff, unless such stuff is delivered by a well paid professional.
I had several days of chemo brain, (lt a week) and the worst case of hiccoughs EVER --- Not a listed side effect, and it took the nurses about an hour to find a cure --- A shot of apple cider vinegar did the trick
My wife had 12 courses of oxaliplatin in 2019/2020. She is back on it late 2022. (appendiceal cancer) It has the same neuropathy side effects. She uses cold therapy mitts and socks during infusion to reduce the blood flow, and hence chemo delivery, to those areas. It has definitely helped reduce those side effects.
I went through this in 2018. Nothing prepares you for the fight. I coined the term Happy Warrior. Your attitude is the only thing you can control. Happy is your disposition. Warrior is your spiritual fighter. Try THC and CBD tinctures for nausea
I lost 53 lbs and needed a feeding tube. Be careful with Adivan and fentanyl patches as they are very addictive. I have one more appointment scheduled in June then I am clear. Suffered neurological issues and hearing loss as I do the weekly chemo. Good luck
Beautifully written, and please maintain your humanity and sense of humor throughout this ordeal. You will prevail. I did. Same deal - Cisplatin and radiation following surgery to remove lymph nodes (cSCC). The radiation will eventually wreak havoc with your taste buds. Need calories? Meet your new best friend - Ensure Plus. Try a banana with the chocolate flavor. Also, grilled cheese seems to work. You’ll be surprised how quickly you bounce back after the treatment ends. Also, if it’s cSCC, check to see if you’re eligible for the adjuvant immunotherapy trial. Good luck. I’m almost two years post-treatment, retired and volunteering at the hospital infusion wing.
Thanks for your post. There is a lot of cancer in my family (particularly maternal side).
When I went through chemo nearly 20 years ago (4 courses of adriomycin/Cytoplaxin) I found it impossible to avoid nausea, particularly the first few days after an infusion. That said, the sublingual anti-emetics work better than other therapies.
I also found drinking lots of water helped, and listening to my body. Sometimes I hankered after a nice steak--sure I was building the red blood cells up. My last chemo was delayed as my white blood cell count was too low. I researched and found that cooked tomatoes assist in rebuilding WBC. Sure enough, it worked very well.
One of my friends also going through the cancer journey contemporaneously with me is a doctor. Her point was that med school (at the time she matriculated) did not cover nutrition very well. I found various online sources to be quite helpful though one must check and double check. God speed!
Thank you so much. As a matter of fact I am HPV positive. I’m not sure how much longer they’ll put up with my pouting about the feeding tube. Over the last 5 or 6 days my mouth has really taken a turn for the worse. The only thing I can taste is salt and a bit of chocolate, which happens to be the flavor of my protein drink, I found fairlife the most tasteful. Other than that I flood with ice water. I’ve lost a little over 10 pounds in the last week or so and heard about it today from my rad doctor.
Tuesdays are my chemo days so I get the full treatment, labs, doctor visits chemo then radiation around 2 or so. Since the Mondays after Christmas and New Years are holidays I ended up choosing 2 rad treatments, am and pm, as opposed to driving into Houston to the main campus. I’m being treated at The Woodlands location, which is a norther suburb of Houston. Free parking as opposed to $15 at the Med center location. Good luck my friend, my thoughts are with you. If I hear of any miracle solutions to our problems you’ll be the first to know