Neuropathy

[potatoe]

Mom diagnosed with Ovarain Cancer (stage 4) last summer.  Successful surgery and chemo (7 rounds) with no spread of disease.  Was hospitalized Christmas Day with severe neuropathy in legs and fever.  Is being treated with Dulaudid, Toradol, Tylenol for fever and Ativan for anxiety.  Has a history of depression, fibromyalgia and arthirits.  Has become worse instead of better.  They have isolated the bacteria (strep) and are treating with antibiotics.  She has become unable to form a sentence and nothing seems to relieve her pain for more than an hour.  I had them switch her from Dulaudid to Morphine based on last summer's surgery when the morning after she was lucid and pain free on morphine.  I think the Dulaudid really messes with her mind.  The Dr.'s seem to think she's getting plenty of pain meds and believe her anxiety has sent her into a state of semi-hysteria and inability to judge pain.  Is always either in excruciating pain or no pain.  They thought they would give her something to ease her mind tonight.  Has anyone ever experienced uncontrollable pain with neuropathy or do you think the medicines have made her unable to effectively judge what's going on?  

[john4321]

Learn About Reducing Pain Caused by Ovarian Cancer
Step 1:
Know that pain can be managed. Pain is an uncomfortable side effect of the disease and treatment but there are options available to reduce it.

Step 2:
Learn to identify the different types of pain. Acute pain is sharp pain that only lasts for a brief period, whereas chronic pain can be moderate or severe and lasts for an extended period of time. 'Breakthrough' pain refers to pain that can 'break through' the barrier of medication.

Step 3:
Ask your oncologist about the different pain medications and their side effects to determine which ones are most effective for you. Finding the right pain management technique is a process. Don't be afraid to try new medications or therapies to find the right combination.

Step 4:
Be sure that both you and your caretaker(s) understand how to manage your pain relief if you are an outpatient.
Determine the Methods That Work to Reduce Pain Cause By Ovarian Cancer

Step 1:
Let people know about your pain. The most important aspect of pain management is communication. Letting your doctors and nurses know about your pain as soon as you experience it is one of the best ways to make sure it is reduced.

Step 2:
Anticipate pain so that pain medication and relief is available before you experience extreme pain.

Step 3:
Be sure that you follow instruction labels on pain medication to ensure that the medication works the way it is supposed to. Don't take too much or too little, which may change the intended effects.

Tips & Warnings

Know that as a cancer patient, you have the right to have pain relief.
Be sure to ask your doctor to prescribe a new medication if you feel that your current medication is no longer working or if you think it is ineffective. Don't forget that you are the one who makes decisions about your treatment.
In addition to pain, other side effects can include depression and anxiety. There are medications to deal with the mental health symptoms that accompany ovarian cancer treatment. You might also benefit from joining a support group.

Anti-inflammatory drugs and corticosteroids (for example, prednisone or dexamethasone).

Corticosteroids used to treat cancer and cancer pain are not the same as steroids used by body builders.

Narcotic painkillers, such as hydrocodone (for example, Vicodin), oxycodone (for example, Percocet), morphine, methadone, and fentanyl.

Bisphosphonates, such as pamidronate and zoledronic acid. These are used to treat bone pain. Cancer cells that have spread to the bone upset the normal activity of your bone cells. These drugs slow the bone changes related to cancer. This relieves pain and helps keep your bones from breaking.

Calcitonin may help with certain types of pain, such as phantom pain.

Antidepressants, to relieve pain and help you sleep.

Anticonvulsants, to help control nerve pain like burning and tingling.

Skin creams, such as capsaicin cream or lidocaine, to help relieve pain in the skin and surrounding tissues.
Chemotherapy, to shrink the cancer that is causing pain. The type of chemotherapy that you receive depends on your cancer diagnosis, the area of your body affected, and your previous use of chemotherapy drugs.

[Beachwalker33]

I found while at City Of Hope with my Mom that I had do research as to the best medications,treatment options ,etc.I did research on Google and read at the medical library at the hospital.It didn't make me happy ,when I kept hearing that's a great idea,from het doctors.These people had my Mom's life in there hands.Don't be afraid to make suggestions,I also would take notes as to what they said or tape record.It's much better to make informed decisions.Take Care,Jen

[potatoe]

Jen,

Thanks so much for your reply.  As of today, my mom needs the morphine less often.  Has gone 5 hours in between.  I neglected to mention she is already on a 50 mg fentanyl patch as well.  They are giving Ativan, as I mentioned, but also Respridol.  The Respridol is supposed to be a mood stabilizer.  It seems to have worked but she is in  la la land.  She knows who we are but doesn't know where she is.  Thinks she can do things  that she can't ie; get up and take a bath.  I have become so inundated with medication info. and changes to meds that I'm finding it hard to keep it straight.  I also have an 85 year old father who is at the hospital every day and trying to maintain a house etc.  He's actually doing okay but is very tired.  Why can't the Dr.'s figure out what works and what doesn't?  It's been 10 days.  I feel like I'm the one trying to figure out the puzzle without the benefit of medical training.  I'm at a loss as what to do next.  

Thanks for replying to me.

[Beachwalker33]

Morphine is a good choice for pain because it also has anti-anxiety properties.Ativan in my opinion, doesn't work very well,it didn't work very well for my mom.If she can swallow pills request xanax,it works much better then ativan.Anxiety will also increase pain.I'm so sorry for i've been in your place.Ask about a fentanyl patch or in between the morphine percoset for breakthrough pain.If I can help in anyway in supporting you in this tough time just let me know.Nothings worse then seeing your mom in pain and not knowing what to do.Calling the american cancer society for med suggestions is also a good idea 1-800-acs-2345,I did this several times.God bless you and your Mom.LOL,Jen

[potatoe]

Hi Janet,

My name is Beth.  Thanks for your reply.  My mother's name is Janet as well.  Would you tell me what the neurologist has recommended for you when your pain is at it's worst?  I am assuming you are able to be at home and function (a relative term I know)with this treatment?  Currently, my mom is on morphine every 2 hours which barely seems to hold her.  She is also taking Lyrica for fibromyalgia and Requip for wrestless legs.  Both are conditions she has endured the past 10-15 years.  Based on your recommendation I'm going to suggest a neurologist as the next step.  But it would be good to know what gets you through the tough times.  They have done every kind of scan I can think of with no evidence of cancer spread.  They have done an EEG as well with clean results.  Any advice you can give me would be much appreciated.  

Thanks so much,
Beth (potatoe)

[Janet535]

Hi there,

I'm so sorry you and your Mother are having to deal with this on top of every thing else she is going through.

Many people get neuropathy from being on chemo. It can vary in it's degree of discomfort or pain. Most say it's at its worst in the toes and pads of their feet and some also get it in the tips of their fingers. The tingling/burning sensations generally come and go.

I have no trouble believing the pain your Mother says she is experiencing is real. I have constant neuropathy. It's 24/7. It never stops. My feet and fingers are effected by it. Generally on a scale from 1 - 10, mine is never lower than a 3 - 4 but when it "flares" up it can go to a pain level of 7 - 8. And it can last for hours and it really is the worst feeling to try and describe. But I will say there are times when I think taking a knife and hacking my feet or fingers off couldn't possibly be as painful to deal with....

My point being, your Mothers pain should be taken seriously and dealt with accordingly. My Oncologist sent me to a Neurologist and after doing tests, they liased and came up with a treatment plan. One that wouldn't interfer with my chemo but would give me some relief when I needed it.

If your Mothers oncologist isn't taking her health care seriously enough, perhaps you should look at seeing another oncologist or insisting he/she makes an appointments to see a Neurologist so they can manage her pain with appropriate medications.

I hope you can get this sorted for her if she is unable to advocate for herself. I wish you both the very best and hope your Mother gets relief soon.

Kind regards...Janet  

[dian07]

I am so sorry your mom is going through this......I really feel bad for her.  I know it must be awful having to watch her not being able to help.
I don't think a doctor can say for certain that her anxiety is confusing her mind making it difficult for her to recognize pain.......that doesn't seem right.  I know pain can confuse the mind, however.   If she says she is in pain, I would believe her ..... why do they have to wait until tonight to give her something to ease her mind.... why not now?  I hope you are able to advocate for her with her medical team.....nobody should suffer like you are saying she is.....nobody.   That is just not acceptable.
Good luck and , again, I am so sorry you and your mom are going through this.
Peace.
dian