My friend's side effects of chemotherapy....tips?

[nsracing]

I have had my share of onc-patients. I normally see them when I get called coz they are drowning.

Happy to hear good news JSP! Happy for you. Cancer is just a bi-otch! No other way to describe it.

A working port is nice to have - you can infuse many things w/ it.

As far as the experience of being declined by another cancer patient for your rays of sunshine from another cancer patient, I will decline too. If I am already in trouble, why would I want another person-also in trouble- to give me advice? I will tell you to go hike a canyon too.

All I will say is this- the time left you got in this earth, make it so that it gives some meaningful exit. Everybody will die sooner and later. WE will all make this trip.

Psalm 23 - is all i need.

[jspbtown]

Had the call with the husband & wife who was recently dx'd with the GBM (husband).

Very similar story to mind. It presented similarly (except he did not have the type of seizures I had). They were disappointed that he was not accepted into a clinical trial. I SO remember clinging to a "cure" through a Clinical Trial with my father in law 25 years ago and when I was first diagnosed. I continued with my living philosophy of "optimistic but realistic". I told them to always have hope but focus on fighting for time. Stay healthy, push through medication side effects, be a strong advocate for yourself and ....even when feeling terrible..be thankful for what you have and to the people providing you treatment. I also shared with them my treatment regiment which they were very curious about.

I think that, by sharing my experiences over the past 2 1/2 years +, they understood its all about clawing for every day and pushing through the bad ones, so you can enjoy the good ones. They have 3 college age kids so we touched base on that as well.

It was pretty emotional for my wife but she hung in there. They are local we we plan to meet for coffee and chat more. It was draining...but it felt good to maybe help.

Thanksgiving around the corner. Its going to be a LONG day with all the family but I will push through. Who knows? It might be my last one so I will enjoy it and sleep the ENTIRE next day!

Happy Thanksgiving to all. Say "thank you" to someone for something small....

[Abscate]

Have a great day jsp! Take tomorrow off. U

House full of 9 ladies and me in NYC.
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[shaggysboss]

Looking for a solution for a family member fighting cancer, I found out about medical cannabis and reached out to the Releaf clinic in the UK. They created a personalized treatment plan, and after a month of following it, we've started to see some improvements. The nausea has significantly decreased, and they're able to eat again without feeling as awful as before. While it's still early days, we're hopeful because things are definitely getting better.

[jspbtown]

Cannabis does a wonderful job for some people. I fully support anyone's personal decision as to how they manage their lives trying to battle cancer.

For me.....and just for me....I am trying to avoid anything that might be mind altering. Sadly, I am slowly, but steadily losing my "faculties. I can feel it. Its pretty subtle right now but I lose a cognitive step about every day.

Zofran does the trick for the occasional sour stomach for me. One day things might be different, but for today I fight the battle to stay self aware.

Friday I will spend the day working at my friend's Christmas tree farm....Nothing like some crisp New England air and lugging freshly cut trees around a field.

[jegued]

Chemo side effects suck. I’ve seen a few people get some relief from quality CBD, especially with anxiety and appetite. Joy Organics was the only brand that didn’t seem sketchy when we were researching

[Abscate]

I keep thinking about you and checking in on your logins, jsp.

Hang in with grace.
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[jspbtown]

Still here....

Good news...my glioblastoma has been "sleeping" for 3+ years now (give or take. March of 2022 was when I was diagnosed . First rounds of chemo/radiation did little. Second type of chemo seems to have placed it into a "dormant" stage, Its still there, but its not growing yet. Been off "chemo for over a year but I still get an immunotherapy infusion every 2 weeks which has seemed to help keep it asleep.

Of course this treatment has not been kind to my body. I suddenly developed "ascities" which is a build up of fluid in my belly/chest. We are still working on a "why" it came on suddenly but for now I get my belly "tapped & drained (a paracenteses) which is NOT fun..... to drain fluid out. So far I had 4 liters 1 time. 5 liters the 2nd time, and 6 liters the 3rd time. I will have another one on the 18th and they will probably go to 7 liters. Good news is that the fluid shows no malignancy. But its tough to get a full breath and exercise, and eat well carrying around 6 extra liters (think THREE 2 liter bottles of soda) in my belly, pushing on my stomach, lungs and my back.

So in the next 2 weeks I have a tap & drain, a liver MRI (already had the CAT scan), an endoscopy, a colonoscopy. an infusion, Oh, and a fancy dinner for my 61st birthday that my wife snuck in on a free day

I made a promise to my wife and son that I would fight. And I promised myself NOT to be a burden on my family and so far, so good. Although it is getting a little more challenging. But I wake up every day.....slowly open my eyes,wiggle my fingers and toes, smile and say "Not today. Not today"

Be well all....give your family a hug! TELL them you love them. Face to face if possible.

[obus]

Continued health and hope the drainage gets less soon. Im glad you are fighting. I just lost my Wife to Huntingtons disease and she battled a long hard fight until Sunday morning. The Man above needed another Angel.
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July 1959 Mango Standard Bus aka Obus L346 L347 https://www.thesamba.com/vw/forum/viewtopic.php?t=256592&highlight=
June 1973 Pumpkin Orange Thing aka Othing L30H
https://www.thesamba.com/vw/forum/viewtopic.php?t=711775&highlight=
1960 Paprika Red Karmann Ghia Convertible aka Schatze L452 built 5/20/60
https://www.thesamba.com/vw/forum/viewtopic.php?t=...highlight=
March 1956 Beetle convertible L41 Black

[jspbtown]

I am hoping "the man above" can do with one less pain in the ass (me) for a while longer.

13 liters of ascites drained so far. Liver MRI this week. Liver biopsy in another week. Although I do think things are a wee bit better. I have all the bad things that many alcoholics suffer from without even being any sort of drinker (Mich Ultra was it for me).

Good news is brain tumor remains "dormant". Walked almost 3 miles today and spent 4 hours keeping my 30+ year old lawn tractor going yesterday.

So not today for me....not today.

[jspbtown]

And again...I am sorry for your loss. I think death is harder for the loved ones that are alive. She is at peace. I hope you can be as well soon.

[viiking]

My 70 y.o. wife has Polycythaemia Rubra Vera. It is a form of blood cancer where she over produces excess red blood cells. This has led to blood clots in her brain when her platelets get too high.

She has had this now for nearly 15 years and has been treated with Hydroxyurea (Hydrea). Originally she only took medication 3 or 4 times a week but now she is taking it daily. This has resulted in her suffering significant nausea constantly and the concomitant effect on appetite. Essentially she has been on a form of chemotherapy for 15 years with no break.

She has been given all sorts of medicines to alleviate it with no appreciable effect. Ondansetron (Zofran) she does not tolerate well so that is of no use.

I've heard of the medical cannabis route but is it worth trying? It is legally available here in Australia but her Haematologist is a bit anti in trying it.
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1968 1500 RHD Lotus White Beetle since birth. In the hospital for major surgery
1966 Lancia Flavia Pininfarina Coupe - in the waiting room
Discharged: 1983 Vanagon, 1974 1800 Microbus,1968 Low Light,1968 Type 3

[Abscate]

Tell her Haematologist if she has concerns, she shouldn’t use it.



Let the patient make the call, it’s about quality of life as well as medical intervention. Only she can judge what the right balance is.
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[jspbtown]

It absolutely is her call. However, in the US you would be hard pressed to find a doctor who would prescribe a medication that would harm the patient.

I am NOT saying it would harm her but you said her hematologist was against it.

Maybe a 2nd (or 3rd) opinion?

But asI said, its ultimately her call. I made the decision to hit my GBH REAL hard and it looks like that call might have made me damage my liver. I am fine with that. I knew the risks and I made the decision in consultation with several highly qualified Oncologists. I am at peace with it and I have enjoyed the 2+ extra years I have squeezed out.

Good luck in your journey.

[jspbtown]

Keeping promises can sometimes be harder than it sounds......
And today was one of those "harder" days.

Started at the crack of dawn with a liver biopsy....trans jugular no less

For this they run a thin tube into your neck, around your heart and into the liver and take out a couple of nibbles for testing. I was awake, but mildly sedated for all of it. Not horrendous but not exactly like laying on the beach. Then the doc suggested I get some more ascites drained while I was there. Sure! Why not? That was another 4 liters of fluid drained. We are up to 27 liters in the past month or so. I think my stomach wall is getting a little angry as, even though it was Lidocained, it still stung like a banshee. I feel like I have gone a few rounds in the ring. Got home to a text from my son..."Hey Dad. How did it go?" which made me smile. "Just fine, no issues. Love you" I responded. Got home for a 5 hour nap. And sent my wife out to play some cards with the ladies. She needed a break. She worked from 7pm to 1 am so she could drive me to the appointment. She is a good wife.

This post made me feel better. I am a lucky man. Sorry for taking up space here.

[viiking]

Please do keep taking up the space.

We want to hear from you.
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1968 1500 RHD Lotus White Beetle since birth. In the hospital for major surgery
1966 Lancia Flavia Pininfarina Coupe - in the waiting room
Discharged: 1983 Vanagon, 1974 1800 Microbus,1968 Low Light,1968 Type 3

[Abscate]

[LAGrunthaner]

jspbtown, you are a huge inspiration to all of us. I am so very proud of you and grateful for each and every post you send. Your strength and fortitude to power through your tests, your treatments and your outlook makes a big difference in how we all turn the pages in our own lives. You have made helping friends and family through their crappy situations a little bit easier through understanding. You are a professor of sorts teaching us all a new language we have never heard or spoken. This is your space jspbtown.
Linda

[jspbtown]

You are all too kind. Thank you.

[jspbtown]

Well yesterday was the first "bad news day" in a while.

It seems the drug that I am taking to out my brain tumor into hibernation (and is doing a great job still, is also "causing small vessel disease" in my liver. Such the quandary :! Stop the drug thats keeping my brain tumor from growing or keep taking it and kill my liver. Choices choices.

Getting my MGH team together to discuss. Hopefully we can think of something to keep me kicking. I still have some fight left in me yet! Definitely need to think out of the box.