nellswell and Oregan star

kathydaly

I am just writing to see how both of you are doing after your first chemo, last Thursday?This is the 5th day after so maybe you are both still not feeling so great, just remember.....You are both in our prayers and good wishes until we hear from you again..(((Huggs))) Kathy

OregonSeaStar

Hi Kathy - what a sweetheart you are to remember about our first chemo day! I'm actually doing better than I expected. I have a mild to moderate (depending on time of day) underlying nausea most of the time, but I can deal with it. The worst time of day for me seems to be evenings - I get unbelievably cold and nothing seems to warm me up until I go to bed. I haven't heard of this being a reaction to chemo, though. I take my temperature each evening (because of feeling so cold and wimpy) and it's always normal. Do you happen to know if this is an 'expected' side effect?

On Friday I had my Neulasta shot. The nurse took some time to warn me that I may have some bone pain beginning on the 4th day which would be tomorrow. My oncologist gave me pain meds for this, but I'd rather try other means to deal with it. Do you or anyone else reading this have suggestions on how to minimize the pain.

Thanks so much for remembering . . . and asking about how chemo went. It really is helpful to read everyone's posts and get encouragement and advise from those who have gone through this before.
-shelley

krkath

OregonSeaStar said:

Hi Kathy - what a sweetheart you are to remember about our first chemo day! I'm actually doing better than I expected. I have a mild to moderate (depending on time of day) underlying nausea most of the time, but I can deal with it. The worst time of day for me seems to be evenings - I get unbelievably cold and nothing seems to warm me up until I go to bed. I haven't heard of this being a reaction to chemo, though. I take my temperature each evening (because of feeling so cold and wimpy) and it's always normal. Do you happen to know if this is an 'expected' side effect?

On Friday I had my Neulasta shot. The nurse took some time to warn me that I may have some bone pain beginning on the 4th day which would be tomorrow. My oncologist gave me pain meds for this, but I'd rather try other means to deal with it. Do you or anyone else reading this have suggestions on how to minimize the pain.

Thanks so much for remembering . . . and asking about how chemo went. It really is helpful to read everyone's posts and get encouragement and advise from those who have gone through this before.
-shelley

Hi Shelley,
You are one of the few who have the "new" treatment "Elixirs". Taxotere combined with Adriamycin and Cytoxin at each sitting, if I'm not mistaken.
When I started the first 3 sessions weren't bad, it became accumulative. The last 3, I was on the couch most of the time.
First, I was always COLD also. And the Nuelasta shot would kick in and for me it was pretty bad. Not to scare you really! It was manageable, but I did start taking the Pain Medication. I also found that having a heating pad under my neck, while lying on the couch, helped keep me warm through most of last winter.
I couldn't stay in bed, because I don't know...I just felt like I was waiting for the side effects. I know it's wierd. I just tried to say, 1 down, 5 to go and keep focused as best I could.
I did have these moments the day after chemo, I was needing to e-mail and was actually hyper. So a lot of time on the computer at 2 AM.
Hang in there. Let me know how the Nuelasta felt for you. And the heating pad really did help.
Lots of encouragement and HUGS!!!
Kathy R

kathydaly

OregonSeaStar said:

Hi Kathy - what a sweetheart you are to remember about our first chemo day! I'm actually doing better than I expected. I have a mild to moderate (depending on time of day) underlying nausea most of the time, but I can deal with it. The worst time of day for me seems to be evenings - I get unbelievably cold and nothing seems to warm me up until I go to bed. I haven't heard of this being a reaction to chemo, though. I take my temperature each evening (because of feeling so cold and wimpy) and it's always normal. Do you happen to know if this is an 'expected' side effect?

On Friday I had my Neulasta shot. The nurse took some time to warn me that I may have some bone pain beginning on the 4th day which would be tomorrow. My oncologist gave me pain meds for this, but I'd rather try other means to deal with it. Do you or anyone else reading this have suggestions on how to minimize the pain.

Thanks so much for remembering . . . and asking about how chemo went. It really is helpful to read everyone's posts and get encouragement and advise from those who have gone through this before.
-shelley

Hi Shelley-
I am so happy you are also one of the group who did better than you expected. I really believe the old days of constant retching and heaving after treatment is mostly over. We are really fortunate to at least have all these newer drugs that really do control so many uncomfortable side effects.


And, it really isn't hard to remember, when you've been through the fear of it yourself, and the trepidation that went w/it. I had nausea as you describe, and the doctor I think, still made that better for me the second time around with a pill, for the life of me I can't remember, lol.

It is so very interesting, I completely forgot about being cold all the time. My 1st treatment was in July, and the 2nd in Aug. -- hot mos., no? I went to the pool club we belonged to w/ the 3 kids those days and would be wearing a sweatshirt or borrowing one from a gf. And, I kept denying it,(being cold) lol. I didn't want to bring attention to myself, but my gf Maura would just go and get me a hot tea and it felt so good to even just hold it. So, yes I absolutely had that same side effect. And yes, it was worse in the evening for sure.

You know, I believe what you all are calling the Neulasta shot, is what brings your wbc back up again, was what I had, but they didn't even have a name for it yet(16 yrs ago now), it was just GCSF to me, and very expensive per shot--$200--or so. I was never warned of any pain w/it, and while it could have been occuring, it was just part and parcel for the road I was on. I had to take it, and that was that, and they taught me to do it myself, but luckily I had 2 neighbors who were nurses and one or the other always injected me. Do you have young children? Mine were always the bearers of infection for me, and even w/the GCSF, I ended up in the hospital several times due to infection and had to be put on IV drip antibiotics. So, really do wash those hands endlessly and ask visitors to do the same. It is so important, so you can stay on track w/your chemo cycle. Despite what happened to me , I never missed one.


Well, I am so happy to have heard from you and now all we need is for nellswell to answer us, hope she isn't feeeling so crummy she isn't up to it, we will pray. For now, more huggs and laughter coming atcha, Kathy

Susan956

OregonSeaStar said:

Hi Kathy - what a sweetheart you are to remember about our first chemo day! I'm actually doing better than I expected. I have a mild to moderate (depending on time of day) underlying nausea most of the time, but I can deal with it. The worst time of day for me seems to be evenings - I get unbelievably cold and nothing seems to warm me up until I go to bed. I haven't heard of this being a reaction to chemo, though. I take my temperature each evening (because of feeling so cold and wimpy) and it's always normal. Do you happen to know if this is an 'expected' side effect?

On Friday I had my Neulasta shot. The nurse took some time to warn me that I may have some bone pain beginning on the 4th day which would be tomorrow. My oncologist gave me pain meds for this, but I'd rather try other means to deal with it. Do you or anyone else reading this have suggestions on how to minimize the pain.

Thanks so much for remembering . . . and asking about how chemo went. It really is helpful to read everyone's posts and get encouragement and advise from those who have gone through this before.
-shelley

Shelley,
I am glad that you are doing well. Many of us find that the fear of Chemo was really worse than the reality. not that it's not bad... just not as bad as we had envisioned it.

About the Neulasta pain. If it gets to be too hard to manage ask your Onc about Neupogen. It is similar to Neulasta, except that it is a shot that is given each day for 10 days rather than Neulasta which is given in one shot. The benefits for me, was that it really helped keep by WBC up much better (the Neulasta wasn't working well for me) and the pain level was almost unnoticeable where as with Neulasta for 1-2 days of each cycle I was in significant but managable pain (could not sleep). Hope you won't have any pain issues, but if it becomes difficult, you might try the Neupogene.

Take Care... and hope you have a speedy count down to the sleighing of the beast.

((((( Hugs)))))

Susan

OregonSeaStar

Susan956 said:

Shelley,
I am glad that you are doing well. Many of us find that the fear of Chemo was really worse than the reality. not that it's not bad... just not as bad as we had envisioned it.

About the Neulasta pain. If it gets to be too hard to manage ask your Onc about Neupogen. It is similar to Neulasta, except that it is a shot that is given each day for 10 days rather than Neulasta which is given in one shot. The benefits for me, was that it really helped keep by WBC up much better (the Neulasta wasn't working well for me) and the pain level was almost unnoticeable where as with Neulasta for 1-2 days of each cycle I was in significant but managable pain (could not sleep). Hope you won't have any pain issues, but if it becomes difficult, you might try the Neupogene.

Take Care... and hope you have a speedy count down to the sleighing of the beast.

((((( Hugs)))))

Susan

You gals are the greatest! Kathy R., I'm just on A/C w/o the Taxotere. And what a great idea the heating pad is! As soon as I read your post, I dug through all my closests until I found mine (been YEARS since I've even thought of using it!). So now it's plugged in next to the sofa ready to be used at the first chill this evening - thanks! Also, I found it interesting that you were sleepless the night after chemo - me, too!! I tried reading, playing a soothing CD, internet surfing - nothing worked and I was awake all night.

Kathy - It certainly sounds like you had the same cold feelings, too. You must have been a sight going to the pool with your children dressed in a sweatshirt in the middle of the summer! Also, I asked about giving myself either Neulasta/Neupogen shots myself, but no one is going for it. See, I'm a long-time diabetic and used to giving myself several daily injections. Also, getting the shot from my onc. means staying an extra night in the town where the cancer clinic is - 165 miles from home! Maybe I'll bring it up again to my doc . . . . . .

Susan - the suggestion about using Neupogen instead of Neulasta is a good one if the Neulasta is too hard for me. So far, (knocking on wood!) I'm doing ok. My daughter, during her fight with ovarian cancer, took Neupogen many, many times. It worked pretty well for her in the beginning, but there did come a time when even that wasn't enough help.

Thank you, all three of you, for your suggestions and your stories which are helping me so much!
-shelley

24242

Wow all the stories of side effects and how we all have different crosses to bear. My coldness was due to the hot flash I just had which started at age 37 and could go on into my 70's like my own mother. Now that HOT, then COLD is enough to drive one crazy especially in the winter for those hot flashes never stop for me.
Neuprogen was new when I was fighting the fight and it had a side effect of bone pain yet it could be controlled since that ment the bone marrow was working and I could stop taking it. I went on this drug after having a raging staph infection upon the second treatment. Likely it came from surgery and was dorment until White count dropped out of sight.
I am so grateful for those who don't seem to be so sensative cause it is hard for me knowing so many suffer even more than I had to and I find it unacceptable all most. Like Kathy I found night my worst and was turning a heating pad on and off regularly for the back pain. I spent most of my Cancer Life on the couch nauseated and for many years afterwards, nothing like waking each day feeling like CRAP!
I hope that you find something that will help you to be able to cope better and remember if in pain it can be harder on the body pretty much than the cancer we are fighting. TRAUMA is the result and that has ever lasting affects on these bodies of ours often resulting in diseases we must bear for the rest of our lives.
Tara