Had acupuncture on Monday & Folfiri yesterday

lisa42

I'm losing it (my kids tell me that regularly!), but I don't remember if I already commented on another thread about the acupuncture I had since Monday- forgive me if I'm repeating myself! It went well and it was the first time I had acupuncture. Since I wasn't having any chemo side effects at the time, we focused on my neck, lower back, and joint pain I've been having. Interesting... I woke up that day with lots of joint pain & it continued into the evening, but by Tuesday morning the pain was gone! I don't know for sure if it's a coincidence or if the acupuncture really worked. I'm going back for more next week Monday and Thursday & we can then treat any chemo side effects I might be experiencing.
The needles going in didn't hurt at all. Strangely, they kind of felt good. I know that sounds weird, but I kind of felt an "aahh" sensation as each needle was tapped then put in. I think I had about 10 needles in me from my ankles up my legs, back, and neck. They then put soft music on and had me lay there like that about 20 min. I had to turn my head to see if there were really needles sticking out of me, cause I couldn't feel them. While laying there, I felt very relaxed.
This is so great that the new cancer center I go to offers this! I had actually scheduled a free massage for next week, but I cancelled it for now because I scheduled two more acupuncture sessions for next week. I have to leave my kids every time I go in for something like this- maybe I'll get the massages in after my kids are back in school next month.

I went in yesterday for the 4 hours of Folfiri infusion (premeds, leucovorin, the 5FU push, and then a 1/2 hr of Avastin). I came home with the 5FU pump hooked up to me & I go back in tomorrow to get unhooked. That's really the biggest drag- not being able to take a full shower and feeling like I don't want to leave the house with it on me. I know I shouldn't worry so much about that, I just don't like drawing attention to myself. It can be hidden easier in cooler weather, but it' too hot now to wear bulkier clothing or sweatshirts.
Other than feeling tired and having laryngitis, I feel okay. *Do any of you get laryngitis from chemo? I got it back when I was on Folfox and also when I took irinotecan before. Never just while I was getting Avastin and Xeloda though. Weird! I mentioned this to the PA in the oncology office and he said no one has ever mentioned to him about getting larygitis from the chemo.

The weirdest thought for me now is that I don't have a "count down to being finished". I may be on this for the long haul until my body "can't tolerate it or no longer benefits from it", as my onc said. I still cling to the hope of a miracle, though! In the meantime, I'm grateful and glad that there's something that can be still done and that my body seems to respond to the irinotecan (it was when I went off of it in April that we believe "stuff" started growing in me again).

Take care everyone!
Lisa

PhillieG

Fantastic
Lisa, I'm real happy to hear about your very positive experience with the acupuncture. I'm thinking of looking into it more. I know that SK offers a lot of things. I generally just want to get home but if I can get pampered a bit I may just change my mind. You realize that the Chinese have been "hip" to acupuncture for thousands of years. I think they know about it's benefits. It seems that the western world is slower to catch on to these type of things. we want everything in a pill form it seems.

When I had the pump hooked up, I had a very small fanny pack (my own fanny was much wider) that fit the pump nicely. I used to take it kayaking with me too. I wasn't crazy about having to bathe instead of showering but it was only for a day or two so it was manageable. I've had mild throat issues but never laryngitis from it. We all get many different things, why not that.

I know how you must feel about the countdown. I went through a few countdowns until I realized that it just was NOT going away anytime soon if at all. Most people do not want to think of that as a possible outcome, especially if the are new at this, but it is something that does sometimes happen. But you know what, it beats being dead. It gets to be like a chronic illness which again isn't all bad IMO. The way I look at it is that it's keeping me going until they find the right meds to cure me. Or who knows, maybe I won't be cured. The main thing is to be alive and live life. If you're NED and miserable what good is that? None at all. Just know Lisa that you are not alone in this and the point is to live your life. Those people who were at that gym in PA the other night didn't think they would not be home again. You really just never know so live life day to day and be happy you have this chance to suck in all the greatness there is out there with nature, your kids and family, anything and everything you enjoy.

I can't wait to read about more experiences you have with the supplemental treatments. You're an inspiration Lisa and always a pleasure to talk with.

A very beautiful new picture of you too,
peace
-phil

lesvanb

acupuncture
I'm glad to hear that you enjoyed your acupuncture session. I'd been receiving acupuncture before my diagnosis about once a month, and afterwards had it twice a week for most of the year's worth of treatments. I still continue with it and feel it makes a huge difference in me physically and emotionally. I hope it continues to work for you.

Leslie

lisa42

Thanks Phil and Leslie
Thanks Phil and Leslie, for the comments. Yes, I believe the Asian world has "been in the know" for many, many years on certain practices that promote physical wellness. We're just finlly starting to catch on!

As you said, Phil, I'm dealing with this now as a chronic illness that needs to be managed. I can deal with that, at this point. You've been dealing with it about three years longer than I have now, so I know I can do this too!

Have a great day-
Lisa

Shayenne

lisa42 said:

Thanks Phil and Leslie
Thanks Phil and Leslie, for the comments. Yes, I believe the Asian world has "been in the know" for many, many years on certain practices that promote physical wellness. We're just finlly starting to catch on!

As you said, Phil, I'm dealing with this now as a chronic illness that needs to be managed. I can deal with that, at this point. You've been dealing with it about three years longer than I have now, so I know I can do this too!

Have a great day-
Lisa

Acupuncture...
...seems interesting, but, wow, I'm scared of those long needles! they don't hurt at all??

So, Lisa, are you on the last thing that is offered in a treatment? I'm on Folfiri also with Avastin as well, but they took away the Leukoverin when I started getting mouth sores, and the bolus as well, but I still take the 5fu in a fanny pack home. Phil's right too, that is a really nice pic of you.

Hugsss!!
~Donna

lisa42

Shayenne said:

Acupuncture...
...seems interesting, but, wow, I'm scared of those long needles! they don't hurt at all??

So, Lisa, are you on the last thing that is offered in a treatment? I'm on Folfiri also with Avastin as well, but they took away the Leukoverin when I started getting mouth sores, and the bolus as well, but I still take the 5fu in a fanny pack home. Phil's right too, that is a really nice pic of you.

Hugsss!!
~Donna

Donna
Donna,

Yes, I've basically "used up" the other approved treatments for colorectal cancer. Since I already had Folfox and had an allergic reaction to the oxalyplatin and I've tested positive for the k-ras mutation, so I can't have Erbitux, the irinotecan from the Folfiri is pretty much it. It did keep the cancer away while I was on it before, I guess we just now know that I can't go off it. The Avastin and Xeloda combined alone didn't do the trick- my lungs and liver now show activity again on my most recent PET. So, as I said above, I'm on the "long haul". When I saw my onc, I talked to him about other possible treatments, clinical studies of newer things, etc. He said and I agreed that as long as the irinotecan works for me, I should be on that. It won't be until and unless it stops working that we'll look for clinical studies w/ other treatments.

I'm curious, Donna, how come your Dr. put you on Folfiri instead of Folfox for your 1st treatment. I think Folfox (with that nasty oxalyplatin) is usually standard course for frontline/firstline treatment. Just curious. Maybe they're starting to use either one at the beginning now.

Thanks for the picture comment. It did feel good to actually take a decent picture- most of my pics have been awful in the past few months. I think I've been looking better again since I went off the irinotecan in April. Since I just started it all up again, that may change in the near future!

And, no, the needles from the acupuncture really didn't hurt! You should try it sometime- really! They can supposedly treat colon and digestive system problems with it as well as numerous other ailments.

Lisa

Fight for my love

lisa42 said:

Thanks Phil and Leslie
Thanks Phil and Leslie, for the comments. Yes, I believe the Asian world has "been in the know" for many, many years on certain practices that promote physical wellness. We're just finlly starting to catch on!

As you said, Phil, I'm dealing with this now as a chronic illness that needs to be managed. I can deal with that, at this point. You've been dealing with it about three years longer than I have now, so I know I can do this too!

Have a great day-
Lisa

Hi Lisa,I like the
Hi Lisa,I like the picture,is that you?You look so pretty.I am happy that your acupuncture goes well.Acupuncture has been using in China for thousands of years,it always works,so please enjoy it.Take care.

jenalynet

Voice
Hi Lisa,
I am on Folfri, Avastin and take the faithful pump home for 2 days also..My oncologist and I ae trying to maintain a good quality of life for me and I will be on this as long as it is working on the tumors. My scan on June 24th did show good things, the liver tumor around my main vein has stayed as it was and the lung tumors have shrunk some..I am greatful for this. As far as my voice goes, I lose the strength of mine and sounds like I am at a noisy whisper at times but then corrects itself after a while. Happy that the acupuncture worked for you, I don't have pain since the liver tumor shrunk with radiation so no troubles there. I just read your page and I know what you are going through. Hugs to you, Audrey.

Shayenne

jenalynet said:

Voice
Hi Lisa,
I am on Folfri, Avastin and take the faithful pump home for 2 days also..My oncologist and I ae trying to maintain a good quality of life for me and I will be on this as long as it is working on the tumors. My scan on June 24th did show good things, the liver tumor around my main vein has stayed as it was and the lung tumors have shrunk some..I am greatful for this. As far as my voice goes, I lose the strength of mine and sounds like I am at a noisy whisper at times but then corrects itself after a while. Happy that the acupuncture worked for you, I don't have pain since the liver tumor shrunk with radiation so no troubles there. I just read your page and I know what you are going through. Hugs to you, Audrey.

Hi Lisa
My onc started mr on the Folfiri bacause she said she had good results with it, and wasn't crazy about Folfox, and the harsh effects it had on people, it was during the winter, and she didn't want me going through the cold sensitivity she said oxy gave, so she started me on Folfiri with Avastin, which worked, it killed most of the cancer, I'm sure she would have put me on Folfox if the Folfiri didn't work. She wanted something that be more tolerable for me. I'm kind of glad she started me on that and not the oxy, I hope this cocktail does work for you though Lisa.

Hugsss~
Donna

Kathleen808

Hi Lisa,
Hi Lisa,
What a beautiful lady you are, great pic!

Thanks for writing about the acupuncture. **** just finished #11 Folfox 6 and he will have #12 on Aug. 18th. # 10 and 11 have been harder. We were talking today about him having acupuncture when he is all done. He'll have a year after chemo is done before he goes back to work so he wants to do good things for his body.

I hope you enjoy the rest of the summer with your kids. So glad the joint pain is better.
Aloha,
Kathleen

kristasplace

Hi Lisa!
Drat! I keep forgetting to call that cancer center!! How wonderful that you got the acupuncture. I've never had it, but let me tell you, my aging cat had inflammatory bowel disease and was throwing up constantly for years. After i took her to two acupuncture treatments, she never threw up again! It was uncomfortable for her, but she was such a sweetie, she put up with it, and just cried a little. Man, i'd go through any pain right now if it would stop the pain i'm currently having. I have to call them tomorrow!

I knew that you were having to take the 5fu pump home, but i don't know why they're giving you that? You mentioned also that you're on folfiri? When are they going to start the big gun ironitecan? I really feel for you having to do the pump thing again. I hated that thing. It was mostly the bathing and sleeping that bothered me the most, but i found if i used the fanny pack portion of the pouch, most people didn't even notice it. Those that did usually asked about it. They would think it was a pain pump.

I'm glad you're going to take advantage of the cancer centers massage program. I just can't believe that cancer center! Pain management is one of the biggest issues in health care right now. They should ALL be doing it!!

You may have already said, and it wouldn't surprise me if i missed it somewhere, but when do you start the ironetecan. Oh, also, have you heard from Dr. F? Did he have any suggestions for you?

Many hugs,
Krista

menright

laryngitis
Lisa:

I am intrigued by your comments about chemo caused laryngitis. I have been taking the same mix of chemo (5fu/avastin/leucovorin/premeds) and I too have a raspy voice (laryngitis). I have asked several of my caregivers and no one has heard of chemo related laryngitis.

I am eager to know if it will go away after chemo. I was beginning to think that there was something else going on. Your story is evidence that it might well be the chemo. Let me know if you hear anymore on this side-effect.

Good Luck.

Mike

Shayenne

menright said:

laryngitis
Lisa:

I am intrigued by your comments about chemo caused laryngitis. I have been taking the same mix of chemo (5fu/avastin/leucovorin/premeds) and I too have a raspy voice (laryngitis). I have asked several of my caregivers and no one has heard of chemo related laryngitis.

I am eager to know if it will go away after chemo. I was beginning to think that there was something else going on. Your story is evidence that it might well be the chemo. Let me know if you hear anymore on this side-effect.

Good Luck.

Mike

Oh Yeah....
I also have gotten that husky voice when I'm on chemo, my hubby actually likes it, he thinks it sounds sorta sexy LOL

lisa42

answers to questions & weird reactions
Krista,
Yeah- I started the Folfiri (which included the "big gun" irinotecan, as you put it this past Wednesday. I now have the 5FU pack when I go home because we decided to change to the 5FU from the Xeloda pills. My onc and I talked about how we think I might have some absorption issues and are worried that I may not have been absorping all the Xeloda, so we are going to try this (as much as I hated to go on the pump again!) Re. you forgetting to contact the San Diego Cancer Center- you really should- they're great!!

Mike,
Yes, I really think the husky voice/laryngitis is from the chemo. I got it again this time and it lasted about a day and a half. I also used to get it when I was on Folfox- it lasted longer then, maybe 3-4 days. I also get some other "weird" effects that my onc and PA kind of laughed and said they hadn't heard about these... each time I get irinotecan, I get "the sneezes" the next day, then it goes away after a day. Also, if I look down quickly the day after irinotecan, I get kind of weird twinge or snap in my neck- kind of like a rubber band being snapped in my neck. I can avoid that sensation if I just remember to look down slowly. That lasts a day or two and it definitely happened again this last time.

I got the more "typical" reaction to the irinotecan this time too, though- diarhhea. Not terrible, but predicatably at about the same time each day (2-3'oclock ish-weird) & it comes on from nowhere. I'll feel completely normal, then bam! I feel shaky, sweaty, and sick like I'm going to faint, throw up, and have the runs all at the same time. Yesterday it happened when I was out doing errands with my hubby and kids- had to find a bathroom quick- the poor people at Jack in the Box- lol (we actually stopped at a second Jack in the Box a few miles away when it struck again!- just coincidence that it was at Jack in the Box both times!) Glad it wasn't in my own neighborhood where I might have run into people I knew! :~

I had acupuncture today for the second time. Last week, I had it before chemo & we focused on my back, neck, and foot pain. I really think it worked- the pain was gone the next morning! Today, we focused on the pain again (it slowly started creeping back a little yesterday), and we also focused this time on the gastrointestinal upset and nausea. It's supposed to help- we'll see how I do in that department today and tomorrow.
I go back for more again on Thursday. I'm loving this free service my center offers!!

Cheers,
Lisa

VickiCO

Acupuncture
Hi Lisa!

I am currently undergoing acupuncture for the hip pain I've been left with after radiation and chemo. I am allergic to any drugs that will help the pain. I was skeptical, but it appears to be working. I was feeling pretty well, then I went on a 10 day vacation and missed appointments. Suddenly the pain is all back and I can hardly walk again. I go tomorrow for a treatment, and I can't wait.

Donna, I rarely feel the needles, unless she hits right on a nerve (only happened once, and did I let her know! LOL!)

Good luck to you....many hugs, Vicki

sfmarie

Hi Lisa
Thank you for sharing. I read your profile as well and must say, you are such an inspiration. My sister was recently dx with stage 4 cc. She too had the pump to take home and could not wait to take a shower once it was unhooked. She also did acupuncture, and meditation; whatever helps.
I do belive in miracles and I do believe that this is more like a chronic disease and it is great that you have embraced that notion. Never give up hope! I have found this board to be much comfort and inspiration reading what others have gone through. And your story like so many others has inspired me and given me hope.
Yes, you have a great picture!

lisa42

to sfmarie
Thanks!!

donnare

lisa42 said:

to sfmarie
Thanks!!

Hi Lisa
Just wanted to say love your picture - how pretty you are - and thank you for your compassionate posts to me and to others. I read your profile and I am sorry you have been through so much Lisa. All of your posts have helped me in some way, and in one where you talked to Donna/Shayenne about your liver being riddled with cancer, you gave me hope for my husband. His liver is riddled too - over 11 mets - and they are hoping systemic chemo will shrink them and make him a candidate for liver resection.

I also enjoyed your posts on the religion/spirituality thread. I am keeping you in my prayers and wish you the best.

Donna

P.S. was just talking to my husband about how disappointed I was that his cancer center doesn't offer any alternative therapies like acupuncture, etc. Glad you liked it - I have wanted him to try it.

lisa42

donnare said:

Hi Lisa
Just wanted to say love your picture - how pretty you are - and thank you for your compassionate posts to me and to others. I read your profile and I am sorry you have been through so much Lisa. All of your posts have helped me in some way, and in one where you talked to Donna/Shayenne about your liver being riddled with cancer, you gave me hope for my husband. His liver is riddled too - over 11 mets - and they are hoping systemic chemo will shrink them and make him a candidate for liver resection.

I also enjoyed your posts on the religion/spirituality thread. I am keeping you in my prayers and wish you the best.

Donna

P.S. was just talking to my husband about how disappointed I was that his cancer center doesn't offer any alternative therapies like acupuncture, etc. Glad you liked it - I have wanted him to try it.

alternative treatments
Donna,

Thanks again for your kind words & glad my experiences could be of help to you and your husband also. Re. your husband's cancer center not offering alternative treatments, well- before I changed in June to this new center I'm going to, I hadn't heard of anywhere offering such services & I went for 2 yrs not doing anything like this.
I have heard of others on this board mentioning that their cancer center does offer such services also. So- there are some out there, apparently. Maybe you could ask around, google alternative treatments for cancer patients (my center refers to them as "integrative services"). Some centers also allow other cancer patients to use their services for free as well, even if they're not actually patients there. Mine does this, although priority is given to their own patients, of course. I know of someone else who has utilized the services at my center even though they receive their chemo/actual treatment elsewhere.

Take care-
Lisa

lesvanb

donnare said:

Hi Lisa
Just wanted to say love your picture - how pretty you are - and thank you for your compassionate posts to me and to others. I read your profile and I am sorry you have been through so much Lisa. All of your posts have helped me in some way, and in one where you talked to Donna/Shayenne about your liver being riddled with cancer, you gave me hope for my husband. His liver is riddled too - over 11 mets - and they are hoping systemic chemo will shrink them and make him a candidate for liver resection.

I also enjoyed your posts on the religion/spirituality thread. I am keeping you in my prayers and wish you the best.

Donna

P.S. was just talking to my husband about how disappointed I was that his cancer center doesn't offer any alternative therapies like acupuncture, etc. Glad you liked it - I have wanted him to try it.

to donnare
My health insurance covers the cost of acupuncture treatments so I go to a local acupuncturist. The Dx needs to be for pain. I know not all insurance covers it but maybe yours does.

Leslie

donnare

lesvanb said:

to donnare
My health insurance covers the cost of acupuncture treatments so I go to a local acupuncturist. The Dx needs to be for pain. I know not all insurance covers it but maybe yours does.

Leslie

Thanks Lisa and Leslie
I'm going to check with my insurance and also see what I can find in our area. I know there is a wellness center nearby that offers all kinds of treatments that would be complementary.

Thanks and be well,
Donna