"Palliative chemo"

[Laurelin]

I'm starting chemo tomorrow. I got mixed reviews. One oncologist told me it would help me live longer (talking months) and there's so much research that I should buy what time I can get in case there's a better treatment coming. The other 2 were much more negative. I decided to try it. I'd like advice for coping with chemo but PLEASE don't tell me how horrible your experience was but how it was worth it to save your life. That's not my prognosis. But if anyone has little tips for how to cope I'm all ears.
Thanks!

[Skittles]

1. I'd listen to the first doc

stick with positivity.....and someone is always here on DU for you

[Laurelin]

2. Thanks 😊

I'm listening to the first. Or trying to anyway. 😬

[Skittles]

45. happy to see you received some excellent replies

[Laurelin]

47. I know!

What a great resource with wonderful people.

[judesedit]

3. Try grounding

[Laurelin]

6. I had to Google grounding

It looks interesting. Thank you!

[Scrivener7]

4. I have no experience or advice but I wish you

a good experience and the speedy emergence of good treatments and comfort in the process.

All the best to you and good luck.

[Laurelin]

5. Thank you so much!

💖

[Scrivener7]

7. Tell us how it went when you are done.

[Laurelin]

8. No doubt i will be back to whine some more, because DU is awesome

❤️🤎💛💚💙💜

[Scrivener7]

12. It's not whining. This is a major life event. Whatever support

you can get, you should get it.

[Laurelin]

21. 💙

Thanks!

[gerryatwork]

9. Everyone reacts differently

You are going to have unfortunate symptoms.
You will be asked to”how are you doing” by friends, relatives, business associates. The standard response is “I’m fine”. Even though you probably will not be. But hopefully you will be. It’s OK probably better to let everybody know how you really feel.

[Delphinus]

11. Truthful

I am going through this myself - not palliative, but 'curative'. I am being as honest as I can with folks when they ask how I'm doing.

[niyad]

15. Sending vibes for best possible outcome. Your DU family is here

for you. Lean as hard as you need.

[Laurelin]

24. Thank you! 😺

My DU family is amazing!

[Laurelin]

23. Best wishes for your recovery!!

I'm not going to ask how you're doing because I'm tired of answering that question. But I will send you good wishes and prayers, and if you want to vent you know how to contact me. 😎

[Laurelin]

22. That's true

Thanks, I need to have a good answer for the questions.

[Irish_Dem]

10. You are doing the right thing to ask for help and support.

And I have read studies which indicate that people w/ cancer dx who fight, live longer.
You have to do what is right for you!

Good luck tomorrow. I am sending you good vibes and support!

[Laurelin]

25. Thank you!

💗

[xuplate]

13. Consider glutamine for mucositus. It really helped my husband--no sores.

[Laurelin]

28. Good to know

I'll get some. Thanks!

[niyad]

14. Sending vibes for best possible outcome. Your DU family is here

for you. Lean as hard as you need.

[Laurelin]

29. Thank you.

This is such a supportive group! And you are one of the supportive people.

[Dear_Prudence]

16. Rocky and Bullwinkle

For pain after my knee replacement, I watched Rocky and Bullwinkle on VCR. It helped so much that I bought the cd set years later. Watching a funny show associated with fond memories took my mind off the physical pain. With my bouts with cancer, telling my medical team about my mental distress caused them to provide additional support resources. Take care and, also, let others take care of you. Best wishes from me to you.

[Laurelin]

30. I hadn't thought about funny tv shows

I think that would be helpful. Thank you!

[Joinfortmill]

17. It seems worth trying. I wish you well with it.

I also prayed for you because it surely can't hurt.

[Laurelin]

31. Thank you

I believe in prayer. 🥰

[Joinfortmill]

34. Me too, my friend.

[Auggie]

18. Three little tips that worked for me:

Music from my childhood. Mostly what my parents listened to. Following a session I'd lie in bed and put the headphones on low. Soothing, sappy stuff. But it brought back nice memories and helped me get some sleep.

Recipes/cookbooks written specifically for chemo patients. I found one recipe -- a tomato/carrot bisque - that became my go-to. Easy to make, delicious, and didn't exacerbate side effects.

A distracting activity: Mine was work. But it could easily have been a hobby. I also started to go through "stuff" like photos, paperwork, estate planning, etc. It was a little like preemptive closure in case my prognosis were to turn.

[Laurelin]

32. Thank you for the advice!

I didn't know there were cookbooks for chemo but I'll go look. That sounds brilliant.

I hadn't considered listening to my parents' musical choices. La Boheme or Chopin? Actually I think it would be comforting to listen to the Chopin and Beethoven pieces my dad played on the piano when I was little. I used to fall asleep to him playing. That sounds really comforting, honestly

I'm already going through things. My prognosis is really bad. But it would be more fun to complete one or more of the hobby projects I'm in the middle of that I put aside to make time to toss things. My daughters told me to stop that and work on my bucket list instead. I may not make Venice or London but I can finish scanning their old photos.

Thank you!

[NewEnglandAutumn]

19. Tips

My husband started chemo in a last ditch effort to buy him some time and it extended his life by years. I think a lot of people do not understand that although chemo can be rough, the experience varies from person to person and the drug(s) being used.
-you don't always lose your hair
-one actually lightened his skin and turned his hair white so I got him UV shirts to protect him from the sun as he would burn VERY easily. I would say protecting your skin is a very good idea no matter what chemo you use.
-there are a LOT of meds to help with nausea if one does not work try something else. Zofran is common and comes in 2 forms the orally disintegrating one can be better but often costs more money
-eat whatever sounds good at the moment if the only thing you want to eat is a PBJ sandwich go for it! We ordered out a lot because we could get him whatever he was in the moof for
-even if you don't feel great drink enough water/juice/lemonade etc
-check with you Dr but Immodium can be helpful to keep on hand
-when you go in bring home some sick bags they make life easier and no you will not be sick all the time but it is super common and those sick bags with the attached ring are fantastic and you can always keep some nearby you can even buy some online
-Sleep when tired but take time to do stuff you love/enjoy
-At first appointment you have to do paperwork that includes side effects etc. and I found it stressful he just ignored it anyway a side effect of most chemo is cancer it was a bit scary but ultimately we laughed.
-ignore 'odds' everyone in unique

I hope this helps and best wishes

[Laurelin]

33. Thank you!

So much good information ( and some hope). 💕

[Maraya1969]

20. Medical Marijuana!

Once you get the right strain it can work wonders.

[Laurelin]

35. I need the right strain?

That's good to know. Thank you!

[Maraya1969]

36. In my dispensary there are 3, Sativa, Hybrid and Indica. I just ask for the one that is lowest

in THC because I am very sensitive to it and it can give me anxiety. So I get Indica, usually in a chocolate bar where I eat little pieces. A short while after I take one I fall asleep and so sleep through any uncomfortableness, (for me it is pain)

You might have to try different ones but make sure you ask questions at the dispensary. Those people know a lot!

Very best wishes for you!

[Laurelin]

37. Thanks, that's good to know.

A friend brought me gummies and chocolate and I have no clue what's what. I only tried a half a gummy so far. It sounds like I need to go ask questions.

[rampartd]

26. it may take a few rounds of chemo to get the drugs right

if the first round (maybe 8 weeks) is horrible (mine was) the next might be less so and the third may work much better.

i've been coming back clean for a few years now, and generally my oncologist and all his nurses were great.

my hair has grown back better than ever, but don't worry about that.

praying for you laurelin. this is a process, hang in.

[Laurelin]

39. Thank you for your advice

And prayers! I'm so glad to hear you've been clean for a while and hope you continue to have good health!

I'm getting my hair cut tonight. It's been waist length for 40 years, more because I'm cheap than any other reason. , and I'm surprised that I'm a bit sad that I'll be putting away my pretty hair clips. But better to cut it short now I think.

[rampartd]

42. mine came out, in clumps, in the shower

opportunity to try new looks.

[Laurelin]

43. Thanks

I'll get it cut very short to save the drain!

[Diamond_Dog]

27. Hi Laurelin,

I respect your decision and wish all the best for you.

I had 3 months’ worth of chemo about 15 years ago. It was not the most pleasant experience, but I made it through! And if I ever had to do it again I probably would.

My best advice is : Speak up to your health care providers about any side effects you may not be able to tolerate and they will give you something for it.

I hope you have someone to help you with daily care, cooking, cleaning, etc. as you might feel weak and sleepy a lot.

Good luck! I’ll be thinking about you and sending healing vibes.

[Laurelin]

40. Thank you for thoughts and vibes!

Im so happy that you're still well after 15 years! Keep up the good work.

I'm lucky that my husband has been very supportive and helpful. He's a good cook but a lousy housekeeper. I'm looking for a replacement 🤣he'll be thrilled

[mercuryblues]

38. Been there, done that.

My advice. Do everything you Dr. tells you.

Chemo affects everyone differently. For me, the 1st week was absolutely rough. There is medication for that.

Keep track of your labs.if something is out of wack, adjust your diet to help combat that. Eat what you can, when you can. If you want cheeese and crackers for dinner, have cheese and crackers.

Friends will give you offers of help. Use it. Don't be afraid to ask.

Now for a bit of practical advice.

You will be taking a lot of medication's and appointments to keep track of. I I found it easier to have a big dry erase board. I drew a weekly calendar on it and had medication's listed for morning mid afternoon, noon and evening. Because at one point, I was taking about 30 medication's a day plus all your chemo and doctors appointments and labs. That way you can erase the medications that they take you off from add more new medication's they put you on and keep track of your appointments.

My second piece of advice is to call your insurance company and get coordinated with them about pharmacies you can use. For me it was a lot easier to use the pharmacy where I had my chemo done, but my insurance company would not pay the full rate for that until I called and asked for permission .

[Laurelin]

41. Thank you!

The whiteboard sounds brilliant! I'll order one.

I'm lucky that I live in the NL. I hit my copayment in early January; since then I've only had to pay for Tylenol and parking at the hospital. I only get the choice of 2 pharmacies though: my local one or the hospital. But all the prescriptions have been covered. I admit I did not expect to die here but I'm really grateful that I won't leave my husband in debt.

[Scrivener7]

44. Wow. Bookmarking. If not for me, then for someone I care for.

[Laurelin]

46. I hope not for you!

But yeah, what a great community with great advice@