Nausea

[RolloMay]

Do most of you experience nausea at dinner time? I do quite often.

[WayCas Patient]

Rollo,Wayne again. You are experiencing may of things I did in the beginning.

Found nausea was part of it. I lost 40 lbs.

Things that helped: Smaller meals throughout the day, don't smell food cooking, avoid red meats and of course Zofran. Hope these ideas help.

Wayne

[Iggy08713287 Patient in reply to WayCas]

hi Wayne, I have communicated with you before. I see that you said you had certain side effects early on in your treatment. Are you saying that some went away after a while? How many different side effects have you experienced.

I have lost some taste. Have gum sores and everything taste spicy and my tongue is very sensitive . Fatigue. High blood pressure and ended up in the emergency room. It is now regulated. Brain fog. Weakness in my hands. I am a bit off balance and Short of breath. Feel full when I eat a small meal. Some chest pain similar to acid reflex. Hoping that’s it for now.

Victoria

[WayCas Patient in reply to Iggy08713287]

Victoria, Glad to hear from you.

Many of the symptoms you are experiencing are some that I have had and others I still experience.

First, I will say. The human body is amazing. Over time it adapts. Proper treatment helps.

The heartburn was terrible until I was prescribed Protonix. Blood pressure became manageable with BP medication and Beta blocker. Also, help portal vein. For, the mouth and taste. I avoid spicy foods and lots of liquids. Once off Nexavar and just Opdivo saw more improvement.

Well for other problems, one of my doctors said it is a consequence of liver disease and cancer. Brain fog can be hepatic encephalopathy and have tests with treatment.

Weakness, shortness of breath and fatigue are the hardest for me. I rest regularly and see a good Cardiologist. But, still wish I could do more.

I hope these comments help and let you know you are not along.

Best wishes and Blessings.

Wayne

[Iggy08713287 Patient in reply to WayCas]

thank you so much Wayne. I am glad to hear about how our bodies adapt. It is true, things I worried about change. Once one seems under control another one shows up. But I am able to live with them.

I think I am just in a time when all of it is hitting me. Not knowing what’s to come. My options keep getting less and less. And I don’t think the overall picture has hit me like this before. I am an emotional mess. I realize I am grieving. It is time for that. My body needs the release. I am holding so much from this up hill battle. But I am very strong. A warrior actually but even a warrior has to fall sometimes. So glad you are doing so well!

[WayCas Patient in reply to Iggy08713287]

You are so right. I tell people I have handled the cancer. It is the collateral damage and pop up events that never end. Even friends and family don't understand Cancer never ends. It is just the beginning. So, now I just say, "What next, God." I know He has a reason and is there.Take care,

Wayne

[RolloMay Patient in reply to WayCas]

Wayne just read the second half of your email, so true.

[RolloMay Patient in reply to WayCas]

you are so right about not smelling meat.

[RolloMay Patient in reply to WayCas]

Hi Way. RE: nausea, you state "to avoid red meat and to avoid Zofran". (Is this correct?).

Why avoid zofran?

Rollo May

[WayCas Patient in reply to RolloMay]

Sorry, I meant of course use Zofran as needed. Much success.

[AndreaWilson_Founder Partner Editor Caregiver]

Hello RolloMay ,

While I cannot give medical advice, the only thing that ever worked for my sister's nausea was Marinol (the medicinal and synthetic form of marijuana). It was a lifesaver. A true miracle. According to her doctor at the time (over 20 years ago), about 50% of people do not respond to the synthetic version. However, times have changed! There are so many options now with CBD & THC gummies widely available. My sister's doctor recommended that if she didn't respond to the pill, that she smoke it (much to my parental horror).

Zofran, Zantac, everything else we tried was useless. Truly useless. If your doctor does not support/prescribe Marinol, I would look at Exhale Wellness. Personally speaking, I've tried many of their products for my insomnia and they help determine which product is best for you based on your needs. However, they are expensive.

~Andrea

[e-mail]

[RolloMay Patient in reply to AndreaWilson_Founder]

Hi. I was recently prescribed Drabinol. Is this the same thing? Also, trouble with sleep and given Zyprexa 2.5 mg at bedtime. (Seems to work 50 % of the time). Any thoughts?

Also. Overall, I admit it. At times I am scared. I've tried to accept this, but I don't want to die. Any idea of a way to look at this in a more productive way?

[AndreaWilson_Founder Partner Editor Caregiver in reply to RolloMay]

Hello RolloMay , I looked it up, and yes, Drabinol is synthetic marijuana (THC). If it's not working (it should help with sleep, too), many doctors recommend the natural version though some are reluctant to admit it. No health provider likes to suggest that their patients smoke marijuana, but often, the most natural version works best.

I'm not familiar with Zyprexa. It's an antipsychotic medication, but I suspect at that low dose, its off-label use is to help with sleep. However, again, THC should be helping with sleep.

Our liver processes everything, and when it is burdened by cancer, it can be much more difficult. My personal--not professional or medical--is to keep everything as natural as possible when possible. Take as few medications as possible when possible. Take medication in a form that is easier for our bodies to process with less burden on our digestive organs. Know what I mean?

I don't think anyone wants to die, but we all do. Depression is often about the past, and anxiety is often about the future. It may sound trite but live in the present. Focus on what you have now. When you wake up in the morning, what would you like your day to be like? What would you like to do? Do you have any daily rituals to assist you with your fears? For example, every day, I meditate (only for four minutes), chant (it's my way of praying), keep a gratitude journal (I use a simple app), and read (my favorite thing to do).

I don't know if this talk will help, but it might: youtu.be/tZof4Ou4DBQ(Not working as expected?)

Also, DancingEyes63 may have some thoughts. She and her husband lived each day to its fullest. From renewing their vows to attending concerts, they enjoyed their lives together in the best way possible.

Love, Andrea

[RolloMay Patient in reply to AndreaWilson_Founder]

Thanks Andrea. I am so grateful for this website. I have read over and over and the term gratitude always comes up. Thank you.

[DancingEyes63 Moderator Caregiver in reply to RolloMay]

Don't know if this will help but Jimmy always said that yes he was dying but he didn't plan on doing it every day. What he meant was that we knew he was, he was prepared as far as being right with God and we had to talk and deal with issues like funeral, realities, legalities, etc. We talked and made sure all of that was decided and wrote down as to his wishes because after it was done, we were through talking about dying, instead we talked about LIVING. Every morning we'd get up, drink our coffee, listen to music and talk. Talk about good memories of our past or just what we wanted to do that day. Might just be planning what needed to be done in the garden or what we wanted to do for supper. We tried to find joy in every day and happiness in the small things that we take for granted. And pictures....I took lots of pictures so I'd have them after he was gone. We learned to be grateful for every Blessing and take advantage of every moment God gave us. We downsized and cut back and slowed down so we could take the time to really experience things. Probably sounds silly but even just sitting in the garden and visiting with friends or family that stopped by. And they always left with a bag of goodies from the garden because God Blessed us with an abundant crop so we paid that Blessing forward. Jimmy didn't believe in pity parties so he always tried to be positive and grateful. Everyone says you could feel the love between us and the happiness that we had been given one more day. While I miss him so very much every second, I'm also grateful that I was Blessed to love and be loved like that.So I know it may be hard but try to enjoy the time you have, have fun and LIVE. ❤️