Switching meds ... again

[mellie4]

Some of you know I've been pretty run down since late spring.  I was diagnosed through my primary care doctor with CLL (chronic lymphocytic leukemia.)  At first I was pretty nervous but after researching it, it seems to be more chronic than acute.  Could be worse.

In the meantime, my hand pain is still very bad.  I have tapered off a bunch of medications.  At one point when I was having a lot of trouble keeping food down, they switched me to morphine.  Problem is the morphine gives me headaches.  Last time I was at the pain clinic I mentioned I'd like to switch to something else but she said just stick with this for now.  Well, since I can't take ibuprofen any more because of my stomach, the headaches are really getting to me.  They're not awful, like migraines, more of a deep, dull headache but I get it with every dose I take.  I've left her an email and am going to call tomorrow but I think she's going to want to keep me on this.  It's making me miserable.

I've had a lot of med changes and not much works for the nerve pain.  The best relief I've got is from the oxycodone.  THe only thing I don't like with that is that, for me, anyway, it doesn't last long.  The morphine I have to say does last a long time.

I'm just sort of venting and looking for ideas of a pain med that has the lasting ability of the morphine but works as well as the oxycodone.  And I'd prefer to not go on any long-lasting medications if possible.

[marycarmel]

It's Mellie4 under a new screen name.  Something happened and I was locked out of my account and couldn't get in despite trying to get them to resend the password.  Not sure what the problem is.  So I wound up getting a new screen name.

Tuck, thanks for the replies, and everyone else as well.  I am up and down on the CLL diagnosis, though all things seem to indicate that for most people it's more of a chronic issue.  My primary care wants me to see the head of hem/onc at one of Boston's big cancer hospitals.  I had asked about seeing a hem/onc my mom had seen and my dad continues to see.  She had said that would be okay, but she would prefer me to see the one at the bigger hospital only because I'm a little young for this diagnosis, that it usually hits men and men in their sixties, though of course there are exceptions.

She is aware I can't get in until 12/5 but she feels that my counts at the moment are okay and we are monitoring them every week or two.  I am trying to get stronger, though it is a long road.  I didn't realize how weak I had become since being hospitalized.  I have got one or two infections that are hard to shake.  But my numbers, while definitely not normal, are not too bad.  From all I can gather, I would be considered a Stage 0.

There are days I get pretty worried, mostly in the context of my kids and what would happen if anything happened to me, but most of the time I can remain level-headed.  It could certainly be something far worse.

My dad also has a bone-marrow failure disorder, myelodysplastic syndrome.  He's had it now over 12 years, and on diagnosis was told 6 months to 6 years.  Nothing has changed in his blood levels in that time.  They just monitor it, as they will with the CLL.  His was likely brought on by some kind of toxin exposure.  It seems with CLL there are no risk factors.

But I am doing better with the new pain medication regimine.  It's not great for the pain relief, but it's taking the edge of and I'm not having any stomach issues so I can keep it down.  And it is a huge relief to not be getting the headaches I got from the morphine.

My plan is to try to take one day at a time, and I'm contacting the gym I used to go to and see if I can work with a trainer to rebuild my strength.  I thought I was getting stronger, but last weekend went to my daughter's homecoming weekend at her university ... an eye opener.  All the walking and hills nearly did me in.  I know she was nervous because I was so slow and that's just not me.  But with time, I hope to get stronger every day.

Thanks for the prayers!!!  They are very appreciated.

[Tuckamore]

Hi Mellie,

As you may know I've been very busy the last several weeks preparing our home for close up for eight-nine months, packing and traveling to our destination.... but have at last arrived and am settling in. That's a long explanation to ask you to excuse my tardy response to your post.

I don't know how I missed the fact that you have Chronic Lymphocytic Leukemia (CLL). Forgive me for missing that diagnosis. I am so very sorry to hear that you have that hanging over you head in addition to all the hand pain you have had to endure. My heart truly goes out to you!! Do you know the stage of your CLL?

December seems like a very long time to wait for a consult with an oncologist.  Is there anyway you can speed that appointment up .... or see another oncologist?

Fentanyl lollipops are a possibility but they are not long acting.... and usually saved for end-stage pain or ppl with difficultly swallowing but that is not always true and they may be effective for you.

You know me well enough to know that I am not comfortable suggesting specific medications on the board. I will send you a PM.

Please let us know how you are doing... and feel free to post whenever you want to... even if it's just to vent. You'll be in my prayers. Please keep us updated.

((HUGS))
~Tuck

[femmy29]

Hi mellie,

I think that is a great plan.  I know the side effects of the neurontin can be harsh.  I had the worst sore throat and a cough for a month and complained constantly about it until the head pharmacist threaten to take each med away one at a time until we found which one was causing it. :-|
The neurontin combined with my other meds were helping so much with my pain, I gave up and stopped complaining.  LOL!  I am so glad the sore throat and cough went away as I was worried something else was going on.

I really hope the neurontin helps with the neuropathy after you finish the titration up.  Neuropathy pain is very difficult to tolerate.  You are a very strong woman that listens to her body to determine the optimal medications and dosages and that is so important!  

The morphine can be very hard to tolerate.  I still have breakthrough pain on a consistent basis twice everyday as the morphine doesn't cover it.  But I am DONE titrating the Morphine!  I take 30 mg twice a day and that is enough for me! LOL!  I tolerate the percocet very well and I wish they had a long acting form of oxycodone that wasn't so expensive.  I have also been interested in fentanyl patches as I am so tired of taking so many pills every day.  

Definitely ask about the fentanyl lollipops and they also have dissolvable strips of short acting fentanyl too (it is called Fentora).  I have heard they work at lightning speed to relieve breakthrough pain.  And it is nice because you only have to use as much as you need and you can put the lollipop away for later when needed.  It sounds like you have a great team of physicians that listen to you and want to help in any way possible.  

I will be praying for you when you go to Boston for a positive outcome from your treatments there.  At this precise time in history, we have fantastic physicians that use state of the art technology and medicine.  I am very hopeful that a breakthrough treatment is just around the corner.  Remember that you have so many friends here that are with you in spirit and are holding your hand through it all.  You are going to make it!!!

Sending more hugs,

femmy  :)

[mellie4]

Thanks for the response!  I actually am just starting on Neurontin for the second time.  Lyrica gave me rapid weight gain in a short amount of time so it wasn't for me.  The first time I was on Neurontin I had some trouble with side effects.  I was working from home and was having a hard time with it.  They said the side effects would subside but I was just having too many memory problems to work effectively.

Now I'm not working so I can wait out any side effects.  I'm still on a fairly low dose, and we're tapering it up slowly.  I seem to be pretty sensitive to a lot of medications so it's okay with me to go slow.  I'm back on a low dose of the oxycodone with the Neurontin and the past few days have been pretty good.

I'm trying to stay away from the long-acting stuff right now.  At one point I was on so much medication and at such high doses and it wasn't really helping much.  I'm trying to use as little as possible and see exactly where my pain is.  It's been hard, and I think I probably will go back to something long-acting at some point, but for now, I feel like I need a medication holiday, or at least sort of one.

The CLL was a bit of a shock, but I'm told it's more chronic than anything else.  I'll be seeing a top oncologist in Boston on 12/5 so they can't be that worried about it.  Until then I have my blood checked every couple of weeks.  It's been a bit up and down, but that's sort of expected.

I'm definitely feeling better off the morphine; the headaches were just too much.  It wasn't that they were terrible headaches, like a migraine or anything, it was just that they were constant.  There's a trade off with just about everything I guess.

I'll have to ask about the Fentanyl lollipops.  My doctor has tried or mentioned most medications but has never mentioned that.  I've been open to everything from procedures and topical creams to different meds, though I did say no to the methadone when it was suggested, only because after researching it quite a bit, I didn't think it was for me.

[femmy29]

Hi Mellie,

You have been such a great help to so many of us here and I am deeply saddened to hear of your illness.  I pray that you will be cured of this cancer soon.  

Have they tried neuronin or lyrica for the nerve pain?  I take Morphine ER and it gave me horrible headaches for the first three months or so and then they went away.  I am not sure how long you have been taking the morphine.  I also take oxycodone for breakthrough pain and you are right, it doesn't last very long.  As for something that is as potent (probably more potent) and short-acting, you could talk to your physician about Actiq.  They are fentanyl lolipops that work much faster than the standard short acting opioid formulations.  You could also ask about hydromorphone or oxymorphone.  I know oxymorphone is the ingredient in Opana, which is a long acting medication.  Not sure if they have a short acting form of this medication and the same goes for the hydromorphone.  I think dilaudid is the short acting form of hydromorphone???  But both the hydromorphone and oxymorphone are stronger than oxycodone and could provide significant relief and when combined with the actiq lolipops, you could be well covered for both your baseline pain level and any breakthrough pain that occurs.  

Stay positive!  You will beat this and we are here always for support.  You are always welcome to send me a personal note whenever you like.  I am online on weekends, holidays, and when I take vacations only so I will respond, it just may be a few days.  I know you are a fighter and I have faith that you will make it through this!  Thanks for always giving to others through your support here, we appreciate very much the great advice and support you have given and I want to do the same in return.  

Sending hugs,

femmy