Leslee has Question

[SimplyStar]

Just talked with Leslee she wants me to ask you what is the best pain medication, for mild to moderate pain, not all the time, just mainly pain wakes her up middle of the night, legs mostly, no abdominal pain, doctors tell her chemo does not affect the bones, she is wondering if it is a type of Arthritis. They just put her on Tramadol, and she was told by the pharmacist that it is very habit forming. she needs something stronger than Tylenol arthritis , any one have a good idea.

[crecco]

Thank you, I have seen Glucosamine before but never tried it. I will now. I am currently taking Feldene for arthritis in my neck and right shoulder.  Chris

[Lynn63]

I'm sorry to hear that Leslee is in pain.  There is an over the counter medication that is amazing for my arthritis in my shoulder as well as degenerative disc in my neck.  The one I use is Glucosamine with Chondroitin, but Glucosamine can be found by itself or with other ingredients.  I once was prescribed muscle relaxers and anti-inflammatories for my neck pain, but when I tried this I was amazed to find out that it worked better and I prefer taking it to muscle relaxers.  Just a thought for those who may be suffering from arthritis.  You do need to take it daily and it may take a couple days to starte helping.  It does something to lubricate the joints or something like that from what I read about it.

[crecco]

Thank you, I will bring that up to my onc and see what he has to say. (I have written it down, so that I won't forget!) I have had 2 Radiofrequency Ablations done to my liver and both were successful, but it just keeps coming back. Maybe something like this will help to keep it gone for a little longer . LOL Chris

[RdgTeacher]

My cancer was in my liver as well and that is why they originally didn't do the IP but my gyn. oncologist ordered a "distribution study".  It was a CAT scan where they injected some kind of dye into my IP port to see if it would reach my liver and it did!  So I got two treatments of IP.  My doctor said any IP treatments help your chances so he was thrilled I was able to get them.

[RdgTeacher]

I had 7 rounds of IV Carbo/Taxol and 2 rounds of IP Cisplatin.  I had a coworker a couple of months ahead of me (diagnosis and treatment).  She warned me of bone pain caused by the chemo - she had it pretty severe and took hydrocodone and oxycotin for it.  I got mild bone pain occassionally and tried the hydrocodone I had left from surgery but it still woke me up.  I tried Tylenol PM and that's what did the trick for me!

[crecco]

I have talked to my onc about IP treatment and was told that since the cancer is also in my liver that it would not work for me. I guess it has to be mainly in tha abdominal cavity.

[freshair]

I believe Leslie is talking about Gemzar. It works with some women. It is very harsh on the blood. Sorry to hear she has to switch over to another drug. And the 5FU is with Oxaliplatin. The IP chemo is really for first users of chemo. When you've had a number of other chemos it is not as successful.

Yes darvocet is good. That is what I took after the morphine with the hysterectomy. It worked just as good as those pricey new painkillers. (for me that is).

I wish those lesions disappeared but it is very good that there are no new lesions so Doxil did work. Now let's hope for a good next drug. Have Leslie take the Epsom Salt bath and then lay on the couch with her legs up. Most likely she does that.  Best wishes Helen

[SimplyStar]

Just talked to her about her results, white count low  at 3  , lesions unchanged, no report on CA125,  they are talking about changing drugs to something she called  gemacide??/ don't know if she wrote this down or is just guessing from what she heard,  I told her about the epson salt baths and the Darvocet, the pain clinic, which she says she will contact,  she says she feels like **** this morning, I did a little research and found that white counts go up and down during the day with adults, low in the AM and higher in the PM,  going to ask her if this could affect  her readings.  she has developed a bone spur on the heel and they said they could give her a cortisone shot for that. Will delay this chemo 1 week now, till the 27th. Give her a slight break.  I think she is ready to go back to Mayo and ask for a progress report and see if there is anything better in the offering.  Her doctor this morning said he had just returned from a conference and was "excited" about this drug he suggested.  He did not want to talk to her about IP, had all kinds of negative things to say about it, doesn't reach where it is supposed to,  too many infections, not proven.  So it was not a good report today and neither was it a bad one.  I hate this damn disease.  The more I read about the combo of Cisplatin and 5FU for repeated chemo users and highly platinum resistent,  the more interested I am.  I was so hoping for a good report before I leave.  Marty

[Lafnatitall]

I have the same bone aches (like the flu almost) after they give me the Neulasta shot at chemo. Feels like I can feel the outline of each long bone with some sharp pains in the larger joints. The doc said that it was the building up of the bone marrow that caused the pain.  Best thing I found was a "warming throw"...not a blanket...it's made of fleece and is like a GIANT heating pad.  I wrap up in that, plug it in, take my sleep med, and life is good.  Darvocet was such a wonder drug...sigh.

[vegas2cr]

Have her try darvocet.   It is mild yet effective for joint pain and you can take it forever without fear of dependency... It is an old drug... probably 50 years but it helps me.  I have horrendous diabetic neuropathy made worse by chemo.... NOTHING including morphine patches or lolipops helps with that... I do take 1 xanax at night to sleep with a glass of red wine... doctors orders,,, just my .02. Hugs to you both... Ronni

[freshair]

I agree with the epsom salt baths. I do that and it helps with achiness. My thighs have been giving me pain lately. I am not on my feet working all day like leslie so I feel for her. I just started taking magnesium so I'll see if that works. I walk up the stairs and my thighs and calves hurt. It is not happening all the time but last night I was uncomfortable due to thigh pain. My nurse mentioned magnesium and that it is not checked routinely on the blood tests. It kind of makes sense to me since I am not eating the large amounts of greens out of the garden now. Swiss chard and spinach are good. Then I take the calcium and D to balance it out.

Alan - it's great to see you on the forum!

[msjazz]

i have take percocet !/2 tanblets off and on since first chemo. it doesn t nauseate me like hydrocodone ,however legally it is a schedule 2 narcotic and has to be hand written. we are in medical equipment business and hydrocodone is considered very habit forming. i know 3 drs here who lost their license for for getting themselves on it. all drugs effect people different, just like the chemos affect us different. some people can take different things and get addicted or be able to take something as needed and not ever want it again. did they do ultrasound to be sure not blood clots? i saw a lady at chemo yesterday on doxil and her leg was red and swollen and she was going to get ultrasound. my fil had a dr. pharmacy and i worked for him yrs ago when he had a drugstore. he would tell people he wouldn t take medicine their dr had prescribed, and i felt he sometimes overstepped his role with the dr and patient, tramadol is a schedule 3, not as strong as percocet, to me not as strong as hydro. i have some of both, but tramadol seems weaker than hydro. good luck.

[crecco]

Marty, My onc has been prescribing me Vicoden since I was dx. he has dropped the dosage some but they still work pretty good for me. I have a lot of problems with pain in my lower back and when it starts acting up he will write me a new prescription. You mentioned arthritis, I have been curious about that. About a year after dx, my neck was begining to hurt all of the time and my right shoulder was so bad I could barely tuck in my shirt. I had an MRI done because he was afraid it might be nerve damage from the chemo. But it ended up being arthritis. So I have been on Feldene ever since. Is it possible that the chemo had something to do with that?  Chris

[alanpvegas]

Vegas is cooooooold right now...well, cold for us :)

[SimplyStar]

Welcome back   We all have missed you so much.  Will pass this on to Leslee tomorrow.  thanks   I am heading for AZ Tuesday   we may be driving to either Vegas or Laughlin while I am there. Got some spare change to get rid of.  

Deandra , will tell her about the acupuncture also.   Thanks

[alanpvegas]

fentanyl patches may work or just something as simple as dosage changes for current or other medications do the trick.  would strongly suggest a referral to a pain specialist...oncologists, despite their experience, are *not* pain specialists.  sorry to hear leslee is in pain :(

[Brownie3321]

Hi  Marty. Has Leslee tried acupuncture? Although I am not a fan of needles, they are small and i think it has worked wonders for my pain and neuropathy. The man who does it only works with cancer patients and I found him through my cancer center. I live in Boulder, so the cancer center has an integrative health floor as well ;) of course...   Also, if Leslee or you wants to talk about IP treatment, you can email me any questions you have as I am on the IP treatment now. Hope you are well, with love, DEandra

[SimplyStar]

Have researched the natural things for pain , but most sound like a bunch of hooky to me.  she is on her feet almost all day at work, floor is cement, she sits at her desk maybe 3 10 minute periods and at lunch for 45 minutes, but then she is usually feeding 2 people then, up and down to the micro. has definitly gotten worse with the onset of this cold weather.  When I went into see her this AM at work , she was trying to help 2 people in wheel chairs get comfortable, had 2 waiting for her to take them to the BR, and this was early in the morning.  I am going to the management tomorrow , I worked there myself for 20 years, and ask them to give her a break from that area,  or I may just go in after I get back and volunteer back in her area and let her rest more.  She loves her work  and won't quit, she says they need her too much.  Dang it I wish I had raised a lazy daughter.  thanks all of you for your helpful hints.  Think it might also be her weight, she has gained so much on the chemo and it just doesn't seem to want to come off.

[hatgal]

Tramadol can be habit forming however they have not classified it yet as a certain class of narcotics.  I actually have some on the shelf and don't like it; it makes me very dizzy.  I also have been trying to get off the hydro as I've been on it since my neck surgery in June and for the "back" pain for which I'm supposed to have surgery.  I was almost off of it when all of this pain started a couple months ago.  As Angie said above, Lorazapam is good, but it's basically valium that just knocks you out - the pain may wake her up.  It's a hard call; what works for some doesn't for others.  My father-in-law swears by Excedrin but that has aspriin, right?  And she probaby can't take aspirin.  Has she tried a pain clinic at the hospital?  They have combinations that the docs don't even know about I think.  Sorry, but that's all the information I have, but I hope she gets some relief soon.  Not sleeping is unacceptable.  Best.......... Elizabeth

[SimplyStar]

She was on the hydrocodone since surgery, wanted off of it, told her I didn't think it was Arthritis,   don't think it is RLS either, beginning to wonder if she should be tested for Diabetus , my Mother and I both had/have it  and that is a comman side affect of it.  It is the shooting pain type, but she is having a lot of trouble also still with the healing of her feet, they are getting better slowly.  They keep telling her it is not connected to the chemo but she had no problem before that  . Doing so much research on this I am getting brain dead.  lol  They are still without elect  out there, They had so many beautiful old trees around their place, most all are down down or shattered, she compares their place to a war zone. She also told me tonight if she has to go off Doxil she is going back to Mayo and ask for IP directly into the abdomen. She talked to a lady today that had it after recurring 4 times, and it brought her CA125 down to 45 and free scans.  I told her while I was gone to get on here and get acquainted with you all.

[Jan214]

I know Leslee was doing well and I am sorry to hear this is waking her up.  Is the leg pain bone crunching, lighting bolts or is it like RLS with just nervous twitchy legs.  My onc said a lot of chemo people develop RLS and for those of us who already had it it is worse.  I took Requip and now Mirapex.  I stick with the hydros for pain, mostly because I am allergice to morphine and codeine.  I can take dilaudid, but just try getting that out of a dr.  i am still hoarding a few from last year.
I have heard good things about the Lyrica for fibromyalgia so it could help.  

[Angie_Lou]

I can't relate to Arthritis, except for the "old" age kind.  And, I don't know what medication Leslee has been prescribed, but one of two types of medication my doctor prescribed for nausea really knocked me out at night; Lorazepam, 1mg tablets.

If she has been given Lorazepam and this doesn't help her sleep at night, then I really don't have any other suggestions.  I did NOT take them frequently, only when I couldn't get to sleep or just wanted a good night sleep.  I keep them on my shelf just for those times, but have not needed them.

The pain medication that was prescribed for me was Hydrocodone/APAP (5mg/325mg), but I only took those in the week after my surgery as prescribed or just when needed.  They just sit on the shelf right now.

I'm not much on popping pills and any narcotic can be habit forming if taken in excess.

I'm truly a believer in Epsom salt baths.  They are relaxing and soothing and the Walgreen brand sells Epsom with lavender.  If she is allowed to bathe, Leslee may want try this periodically.  It certainly is not habit forming in the bad sense.

I do hope she finds what helps her, though.  Angie.

[rmarie]

Marty
Is it peripheral neuropathy? it has stabbing pains, arthritis does not usually wake you up at night, it is there all the time.  She should ask her primary care physician, about it.  They are using anti convulsants (at low doses) for some types of pain that wake people up at night.  If it is neuropathy Lyrica might help, it has been reported as working well.  My primary care physician has stayed in the loop as he refers to it, to monitor my medical problems. I don't know if this helps or not.  Give my best to Leslee, sorry she is having pains.
Mare