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

[LAGrunthaner]

How can I calm down a guy, JR with loads of FEAR prior to the second diagnosis of cancer? JR is so stressed out because he is getting the complete runaround with doctors rescheduling appointments for weeks now. He is over 2K miles from me, a disabled veteran and the VA is shuffling him like a deck of cards.

I fly out to help when I can but I work full time. It is difficult for me to get the timing just right to meet with these doctors who change appointments constantly.

I was there 2 months ago and now I have all the notarized docs to talk to doctors but I think I need help getting JR to focus just to get the doctors names and numbers as he is so stressed out. I'm not sure if the VA understands as I know they have their hands full but this is a very serious situation and time is running out.

Links, phone numbers, VA support centers or cancer support centers to talk to a human in Nevada needed.
Thank you all in advance.
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[LAGrunthaner]

Brian rogers, thank you for all the lessons as it does help to pass it along to those struggling with pain, sleep and trying to function working on a project. I started this thread for a friend and now another. I'm saddened of your diagnosis's and hopeful for your recovery & comfort. Keep working and sharing for all of us.

[jspbtown]

My advice to you is if ANYONE questions how you deal with your pain/eating/cancer treatments to walk up to then, knee them squarely in the nuts and tell them to "F off!"

Sorry....but I just think thats such a personal choice that you don't have to justify it to anyone. Let them walk 10 feet in your shoes first.

Good luck in your journey. The people here are VERY supportive.

[brian rogers]

A little back ground from me and my situation.
I worked as a mechanic in public transit for just over 45 years, exposed to who knows what. In ‘18 I was told I needed a new liver. Being a rare blood type made it more difficult. I accepted a compromised liver, the victim had Hep C. It was under medication when he passed. Things were fine until about a year ago. I started building fluid in my lungs and surrounding organs. Got taped for this twice during my stay in the hospital. Come to find out I have cancer in the bone marrow. This can be quite painfull as the white cells in the bone marrow and blocked the red cells trying get into the normal blood stream. This causes pain in the major structures of the bone marrow. The bones react in pain for the victims. Only thing that touches the pain is morphine that I use sparingly. It’s not and everyday thing. One tends to use it frequently the more diminishing effects making one to use more with less effect on the pain.
Enter chemo, this makes it even more stressful and weakens me even more. Cannibus helps in this for pain, appetite, and as a sleep aid. Part of my chemo regimen is a steroid name of Dexamethazone (sp?). You’ve heard of roid rage. It affects sleep quality that helps heal the body from its hurts. There are 2 varieties of cannibus. Indica helps one to relax and sleep. The other is sativa for pain relief but one is not drowsy but allows one to focus on the task at hand. Mine being working with my hands on a lathe and mill. I build a few VW engines here and there. It can be done using Sativa. Oh by the way, due to my live being over sized instead of the Mercedes triangle scar my belly was cut to the right hip. This cut nerves in the abbs on m right side. This has affected my breathing as there is no control of the abbs and diaphragm on the right side. Effectively I only have one functioning lung. I can’t smoke it. Edibles are my choice to use. Don’t be afraid in using cannibus. But use it with judgement and wisdom of the medical community.

[LAGrunthaner]

jspbtown, we are all here and listening intently. They must be able to balance things out somehow. I will speak for all who are reading that our positive energy continues toward you and we will always be here for you jspbtown. Don't be discouraged, continue to troubleshoot.

[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.

[jspbtown]

You are all too kind. Thank you.

[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

[Abscate]

[viiking]

Please do keep taking up the space.

We want to hear from you.
_________________
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

[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.

[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.

[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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[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.
_________________
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

[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.

[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.

[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.
_________________
July 1959 Mango Standard Bus aka Obus https://www.thesamba.com/vw/forum/viewtopic.php?t=256592&highlight=
June 1973 Pumpkin Orange Thing aka Othing
https://www.thesamba.com/vw/forum/viewtopic.php?t=711775&highlight=
1960 Paprika Red Karmann Ghia Convertible aka Schatze built 5/20/60
https://www.thesamba.com/vw/forum/viewtopic.php?t=...highlight=
March 1956 Beetle convertible https://www.thesamba.com/vw/forum/viewtopic.php?p=10419731&highlight=#10419731

[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.

[Abscate]

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

Hang in with grace.
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[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