TheSamba.com :: View topic - My friend's side effects of chemotherapy....tips?

Thu Dec 14, 2023 4:01 am

Being positive works. My dear friend is home now and things are under control. Chemo is scheduled for every 3 weeks. Hopefully the next round will be better than the last.

I do believe in the power of positive energy. Thank you all for your inspiration and positive energy. Every pain and suffering free day is a gift.

Thu Aug 22, 2024 12:43 am

OP, how's your friend? Hope everything is alright.

Does your friend have the Bard PowerPort? A word of caution: be careful with that. Read here that there are lawsuits filed against the manufacturer because some ports may be faulty and cause big health problems.

Thu Aug 22, 2024 5:37 am

Thanks arteKKK03 for the info on the Bard PowerPort. I see the lawsuits on line but not sure which port my friend has. I look back on this thread and it's been 9 months already when I had learned of how chemo has been on my friends health. Just 2 months before I started this thread I had lost my dear cousin to the same, stage 4 pancreatic cancer and the shock still hasn't left me. I alway think they have more time based on another friend's mom surviving 5 years. I have learned the hard way that every day is a gift and we must always remember that. Don't wait to see, text, snail mail or phone call someone you love.

As of this week my friend is back in the hospital again because the experimental chemo wasn't working as hoped for. I snail mailed fun reading materials out yesterday (what a coincidence) as I know the distraction is helpful being we have reached 9 months of hope.

barteKKK03 wrote: OP, how's your friend? Hope everything is alright.

Does your friend have the Bard PowerPort? A word of caution: be careful with that. Read that there are lawsuits filed against the manufacturer because some ports may be faulty and cause big health problems.

Mon Aug 26, 2024 2:05 pm

Well...lets see. Chemo's effects on the body suck. And they are so personal that its hard to make universal suggestions. But let me share some of what I have experienced. First let me say I have been very lucky. My decline from my Glioblastoma (Stage 4..terminal..brain cancer) has thankfully been slow but steady. I have had radiation, which for me was a walk in the park. Then I had my first chemo, which did nothing, but my body tolerated it well. Much of my blood work actually improved on that chemo. The 2 mile walks each day were critical. I always felt worse right after the walk, but after a short nap I felt much better. Sadly that chemo failed to stop the progression. So I started another type of chemo with an anti-angiogenic) therapy. The chemo is only 2 pills once every 6 weeks. Its so weird...on the chemotherapy prescription bottle it says to not touch the pills with your bare hands...but I guess swallowing them is OK? You can have up to 10, six week cycles although most people drop it after 6 weeks due to side effects. This one has been a bit of a struggle for me. I've lost about 50 lbs (which is partly OK since I was FAT :D . But the food aversion has been tough. I describe it as someone putting a can of wet cat food on a plate and you have to smell it and eat it. NOT appealing at all. Proteins are tough so I take 30mg protein shakes 3x per day. I also force myself to eat. I made a promise to my family I would do everything to live and that includes eating. I can go all day on a bagel but I set my watch and eat regularly because I am not hungry, Each bite is WORK! I try small meals. Stop before I am full. And DO MY WALKS!

There is not much that can be done. Its mind over matter and its exhausting but your friend needs to find a reason to keep going. To keep eating. To keep getting poked and scanned and feeling like crap every day. I wake up each morning feeling hung over. Its tough to get out of bed. But I do...every day and I shower and make my breakfast and find something to do. Whether its mowing the lawn, or replacing some brakes on a car, or doing some other sort of repair I do SOMETHING.

I have 8 out of the possible 10 rounds of this chemo. My tumor will never go away. It will kill me. But right now it is "asleep" according to my scans, and I have paused my chemo to allow my body to heal so I am ready for when it awakens. I only have 2 more rounds of chemo that can be prescribed so thats 12 weeks of life in my pocket. I am holding those final doses in my back pocket as long as I can. The majority of people with my condition live 12-18 months. In Sept it will be 30 months. My oncologists says 2% live 60 .months...so who knows. Maybe I have a little more time...but when it wakes up, it wakes up angrily and my time on this sphere will be short.

I didn't quite follow the Power Port question but if your friend has a port that is implanted and he gets his chemo infusion ask him if he is using Emla cream. You put it on the port 1-2 hours before access and it numbs it so he will feel nothing when its accessed or de-accessed. I get blood draws weekly, NPlate shot weekly and an infusion every two weeks into my port implanted near my collar bone. That cream makes it painless. Every little bit helps.

So my best advice....find something to live for. Remind yourself of it daily. Say everything, leave nothing on the table, and thank those who have helped you in life, no matter how insignificant that help might have been. when people ask me for help, and I feel tired, I always think that when I am gone I want people to say hello to my son and have them say "I knew your father. He was a good man". Thats what drives me.

Individual results may vary :lol:

Tue Oct 01, 2024 8:13 am

jspbtown wrote:
So my best advice....find something to live for. Remind yourself of it daily. Say everything, leave nothing on the table, and thank those who have helped you in life, no matter how insignificant that help might have been. when people ask me for help, and I feel tired, I always think that when I am gone I want people to say hello to my son and have them say "I knew your father. He was a good man". Thats what drives me.

Individual results may vary :lol:

JSBP I cannot imagine how difficult it must be for you to write this. It is inspiring beyond belief.
You are a shining example of peaceful grace while fighting as hard as you can.

I am in awe.

Blessed peace to you.

Tue Oct 01, 2024 10:21 am

Tell you about an aging friend of the family...

She's been a smoker as long as I can remember. Up until recently I had a pretty good memory. Smoking dramatically increases your cancer risk. Sure enough, she lost a breast to cancer about ten years ago. Went through the full course of radiation and chemo. She beat it into remission.

She kept smoking.

At nearly 90 years old her cancer came back. This time she decided quality of life is more important than quantity. She made it to 90. She's still going.

I would be the last guy to suggest "medical marijuana". Still, XITE THC gummies are the "high priced spread" without the actual high price. Most consistent product. Best price. Approved by every 90 year old cancer survivor I know and some of her friends.

.
.

Tue Oct 01, 2024 1:28 pm

Dusty1 wrote: Tell you about an aging friend of the family...

She's been a smoker as long as I can remember. Up until recently I had a pretty good memory. Smoking dramatically increases your cancer risk. Sure enough, she lost a breast to cancer about ten years ago. Went through the full course of radiation and chemo. She beat it into remission.

She kept smoking.

At nearly 90 years old her cancer came back. This time she decided quality of life is more important than quantity. She made it to 90. She's still going.

I would be the last guy to suggest "medical marijuana". Still, XITE THC gummies are the "high priced spread" without the actual high price. Most consistent product. Best price. Approved by every 90 year old cancer survivor I know and some of her friends.

.
.

Quality of like is basically 'it'.
After what I watched my dad and monster-in-law go through... I'd rather die fast and happy than drawn out and miserable, honestly. It would depend on which cancer and what sort of odds for me.

But one of the upsides of medical MJ is the munchies, so there is that. They use it for cancer treatment in Israel.

By the way- today is the 100th b'day of a guy who beat brain cancer 9 years ago. Happy Birthday, Jimmy. God bless you.

You just never know the hand you are going to get in the card game of life

Wed Oct 02, 2024 3:15 am

jspbtown, thank you for your post, advice and strength. I'm sorry I haven't been able to reply to your post until now. You are so very inspirational to all of us and I pray for your strength.

We visited a few months ago and will be visiting this weekend. I continue to power through with upbeat messages, funny cat cartoons and anything to enjoy about life. My partner has mailed her old vintage postcards every few days to keep the mail coming and adding lots of funny comments as we know she loves that. Everyday is a gift.

jspbtown, keep up powering through, I'm so grateful for your suggestions and your kindness.
Linda

jspbtown wrote:
So my best advice....find something to live for. Remind yourself of it daily. Say everything, leave nothing on the table, and thank those who have helped you in life, no matter how insignificant that help might have been. when people ask me for help, and I feel tired, I always think that when I am gone I want people to say hello to my son and have them say "I knew your father. He was a good man". Thats what drives me.

Individual results may vary :lol:

Thu Oct 03, 2024 12:43 pm

I don't think medical anything is good! Try eating better, change your diet, surround yourself with positive ness. Enjoy your family and keep them close. For some reason, it's always a friend! where is their family? Most of the good and the bad stuff comes into our body via our mouths No cannabis in the world can cure you! It's never been proven!! I don't take antihistamines just because I hate the numb feeling it gives me, i can't fathom being high!

Fri Nov 08, 2024 4:35 pm

Thought I would pop in and say (Hi! I am still kicking!")

My GBM remains "dormant" as far as I know. Its been 10 weeks since my last MRI and I go for another one on 11/16 so if everyone can keep their fingers crossed I would appreciate it :lol: I have a bad feeling that being off the chemo for about 18 weeks might have allowed some activity (ie: growth). I will read the MRI on the 17th and consult with my Neuro-Oncologist on the 18th.

My appetite continues to be variable at best. Nothing is appealing and literally everything (candy, ice cream, and protein) takes WORK to get into my system. As a result I am down about 70lbs....which is not as bad as it sounds since I was probably 80lbs overweight before this all started. I am still active...I just finished a 4 wheel brake job (pad & rotors) on mt Cadillac CTS coupe. It took me several days to get it done versus several hours like it took in the past. But I did it...and it felt good. I am still getting out for my 3 mile walk most days.

Got a text from my therapist who asked if I would mind speaking to a couple whose husband was recently diagnosed with a GBM. She said they could "use some hope". Of course I said yes. I am sure it will be emotionally challenging, and my wife suggested I maybe not do it, but I want to leave a mark. If I can help someone I want to.

Just as a reminder, my wife's father dies of a GBM 25 years or so ago at the same age as I am so my entire family is aware of how this disease progresses and what the outcome will be. I really don;t want to sugar coat it so its going to take some thought as to how I go about speaking with this couple. My approach has been transparency, and "optimistic, but realistic". The transparency has gotten me SO much support from friends, relatives, and strangers. It has been beautiful and heartwarming. But that approach isn't for everyone.

So wish me luck with that. I am not exactly sure what to say to a couple who will, without question, lose their loved one.

Time to go watch some college hoop with my son. Live is short...but damn its still good!

Fri Nov 08, 2024 7:40 pm

Enjoy hoops, and thanks for inspiring us to seize the day

Sat Nov 09, 2024 7:06 am

jspbtown, I'm glad to hear it's still dormant and praying for good update news on the 18th. Maybe they need to develop foods that are tolerable for this. My spouse used a drug from Merck and it helped her to hold food down during chemo. I'll track down the name and post.

As for the brake job on your Cadillac CTS coupe, congratulations for getting it completed. Glad to also hear you are still powering through your 3 mile walks that's great.

Enjoy the game with your son and please know how much the samba community has your back :vw: 8)

jspbtown wrote: Thought I would pop in and say (Hi! I am still kicking!")

My GBM remains "dormant" as far as I know. Its been 10 weeks since my last MRI and I go for another one on 11/16 so if everyone can keep their fingers crossed I would appreciate it :lol: I have a bad feeling that being off the chemo for about 18 weeks might have allowed some activity (ie: growth). I will read the MRI on the 17th and consult with my Neuro-Oncologist on the 18th.

My appetite continues to be variable at best. Nothing is appealing and literally everything (candy, ice cream, and protein) takes WORK to get into my system. As a result I am down about 70lbs....which is not as bad as it sounds since I was probably 80lbs overweight before this all started. I am still active...I just finished a 4 wheel brake job (pad & rotors) on mt Cadillac CTS coupe. It took me several days to get it done versus several hours like it took in the past. But I did it...and it felt good. I am still getting out for my 3 mile walk most days.

Got a text from my therapist who asked if I would mind speaking to a couple whose husband was recently diagnosed with a GBM. She said they could "use some hope". Of course I said yes. I am sure it will be emotionally challenging, and my wife suggested I maybe not do it, but I want to leave a mark. If I can help someone I want to.

Just as a reminder, my wife's father dies of a GBM 25 years or so ago at the same age as I am so my entire family is aware of how this disease progresses and what the outcome will be. I really don;t want to sugar coat it so its going to take some thought as to how I go about speaking with this couple. My approach has been transparency, and "optimistic, but realistic". The transparency has gotten me SO much support from friends, relatives, and strangers. It has been beautiful and heartwarming. But that approach isn't for everyone.

So wish me luck with that. I am not exactly sure what to say to a couple who will, without question, lose their loved one.

Time to go watch some college hoop with my son. Live is short...but damn its still good!

Sat Nov 09, 2024 5:29 pm

"please know how much the samba community has your back."

Thank you. The support I have received is overwhelming.

I really have not had a single time where I have puked since my first seizure and hospitalization. Like I have said..I have been blessed.

Food just does not appeal to me and the dry mouth I suffer from has cracked my tongue making even ketchup to "spicey". I made a promise to my wife that I would control what I could control...and eating now is a mental exercise. Last night I had 2 cheeseburg sliders (I need protein) and while I was chocking the last bit down, my wife must have seen my wincing and she said "Don't finish if you don't want to"...

All I could think was "No way is this gonna beat me" and I ate the last bite.

Like I said...its all good. And thank you everyone for not flaming my whining! :lol:

Fri Nov 15, 2024 7:11 pm

Sitting in the infusion chair today (the infusion suite has individual "rooms" separated by curtains so if you talk at a normal volume your business is heard by everyone).

Anyways, there seemed to be, what at least sounded like, a woman on the younger side in one of the chairs next to me.Ttankfully many people there are older. Its sad even when they older but when I see women in their late 20's there its really sad)....so, the woman and her nurse were talking about maybe getting a port implanted and she was just getting flooded with info. Apparently they stuck her 11 times just today trying to get a good vein for her infusion. She said she wanted to think about the port it which is entirely reasonable.

So I thought back to when I was deciding if I wanted a port place and how apprehensive I was....until, while I was visiting friends and family in Florida and was introduced to a guy in his late 20s who had cancer and had a port placed for a while. We chatted and he showed me what it looked like, talked about accessing it, and a lot of stuff that I never thought of.

So, when my nurse came back to check on me I asked him that, if it would help the young lady, I would be more than happy to share my experiences that I have had with the port process with her. The nurse thought that would be great but the young woman was there alone, probably a bit scared, and she declined my offer. It still felt good being able to offer something.

Still trying to offer this world something. :lol:

Sat Nov 16, 2024 4:18 am

that was a good offer and a shame the young woman turned it down. my recent experience of hospitals and health care with my parents made me realise that, even the best staff, could often lose sight of what it's like coming into that unfamiliar environment and having to cope with info and emotions etc

keep on being you

Sat Nov 16, 2024 8:39 pm

I have found that the vast majority of my treatment providers are
exceptional sans one.....who I just see because he is local and just signs off on orders given by my Neuro-oncologist in Boston.

I have also found that little, random acts of kindness go a LONG way to getting extra effort from them. The poor infusion people have tough days stabbing people and pumping them full of poison day after day. Watching the old or young tear up in pain wears on them.

As my wife is a nurse...she let me in a little secret.....food! Nurses are always hungry :lol:

I can't tell you how many dozens of chocolate covered Oreos my wife has made that I bring to the nurses, the docs and the even the receptionists.

Now I always have a warm blanket waiting for me when I go for an infusion. I have nurses handling insurance issues for me. I needed my port accessed and was told by the scheduling person there were no openings. When my wife told one of my infusion nurses of this issue she simply said "Tell the scheduling person to double book me and I will access you between patients". So nice. All for some cookiess, a compliment ("Great job today"), and a "thank you" every time I see them. It really goes a long way in improving your experiences. Nurses are people too. They have bad days sometimes. Some goodwill and recognition for a job well done is a good thing.

Wed Nov 20, 2024 2:38 pm

11/20/24...."Stable" MRI. No growth. Next MRI in 12 weeks. Looks like I should make it through the holidays, which is SUCH a weight lifted off my shoulders! Whoo hoo!
=D> \:D/

Wed Nov 20, 2024 7:36 pm

Glad to read that!

Thu Nov 21, 2024 1:51 am

jspbtown wrote: 11/20/24...."Stable" MRI. No growth. Next MRI in 12 weeks. Looks like I should make it through the holidays, which is SUCH a weight lifted off my shoulders! Whoo hoo!
=D> \:D/

Hearts….

From all of us

Thu Nov 21, 2024 3:17 am

jspbtown, I'm so happy to read this.
I love your tips and tricks. You are an inspiration to us all! Keep up the good work.
=D> =D> =D>

jspbtown wrote: 11/20/24...."Stable" MRI. No growth. Next MRI in 12 weeks. Looks like I should make it through the holidays, which is SUCH a weight lifted off my shoulders! Whoo hoo!
=D> \:D/