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Posted

My mom was recently diagnosed with NSCLC at age 58 and her first symptoms were swelling of the feet and pain as well as clubbing of the fingers. Of course she didn't go in for a year, until she became so dehydrated and sick that she had to be brought in by ambulance. Anyway, I now know that the pain and swelling is due to HPOA, not because of the doctors...they never could explain it...but because of the internet! Anyway, has anyone else had a loved one deal with this and how can we make the pain better? They have tried tylenol, darvocet, oxycontin and now lortab with little results. I have read that the tumor needs to shrink to help the pain but radiation doesn't seem to be doing the job and she is too weak for chemo. Any insight or ideas? This is really affecting the quality of life for her.

Posted

Hi.

I have known about this affliction but your Mom is the first person that I have known about it. The lung specialists have checked my fingers closely without saying a word, but I knew what they were looking for.

Maybe there is someone else who has this arthropy, but I don't know about them. come out! come out!

Could a rheumatologist be of any help to you?

Cindi o'h

Posted

My husband (46 years old) was diagnosed with HPOA in Nov. 05. He started with swollen feet and ankles in June 05. He only weighs about 140 lbs on a wet day, so to see him with swollen limbs we knew something was very wrong. The swelling moved up his legs, into his hands and wrists. Dr. treated him with diuretics most of the summer. Took him to OR on 10/31 because he could hardly walk. They tested for lymes and RA, sent us to a rheumatologist. He listed to symptoms, etc. Sent him for a chest CT on a hunch. Jim also had clubbed fingers. CT came back showing 4 cm tumor right upper lobe. Dr. explained it was HPOA. Went to see oncologist and surgeon, had right upper lobe and tumor removed 5 days before x-mas. Swelling and pain were almost instantly gone. He is going through chemo now, but has had no signs of HPOA since surgery. He did take some darvaset during that time for the pain. We were told that HPOA is a very rare syndrom that occurs with lung cancer. The tumor sends out hormones to the joints which causes the sweling. Hope your mom can find some relief from the pain if surgery is not an option. The rheumotologist did give Jim a shot of something in his knees to help with the pain early on, but that wore off.

Posted

Any suggestion made by the doctors

about *pamidronate* to help her?

The NSCLC bring on the HPOA in only

a few patients and usually it goes

away with the cancer treatments.

Sorry but that is all I know.

Hope your mother gets some relief

for the pain.

Jackie

Posted

Hi there,

I can't help you with your moms diagnosis but I just want to say welcome here.

I pray they find something that could help her pain. That has to be the first thing.

I am not sure but I think they can radiate a spot where the pain is without needing to do chemo.

Maybe some can elaborate ont that for you here.

I am sorry for your mom and you. This has to be so hard to watch you mom in all this pain.

I am praying they find somwthing that will work for her.

Maryanne

Posted

Barbara- your husband was fortunate that the rheumo doc caught the symptoms. I think what happened with my mom is that she had the symptoms, looked it up on the internet and realized what she had and didn't go in because she was scared. Anyway, I am so glad that it went away for him....

Posted

Info On Pamidronate Meds Recommended By Jackie J.C.

Your doctor has ordered pamidronate to help treat your illness. The medication will be added to an intravenous fluid that will drip through a needle or catheter into your vein. You will receive your dose of pamidronate as an infusion (slow injection) that may last 2–24 hours. You may receive an infusion of pamidronate once every 3–4 weeks, once a day for 3 days in a row, or as a single dose that may be repeated after 1 week or longer. The treatment schedule depends on your condition.

Pamidronate is used to treat high levels of calcium in the blood that may be caused by certain types of cancer. Pamidronate is also used along with cancer chemotherapy to treat bone damage caused by multiple myeloma (cancer that begins in the plasma cells [white blood cells that produce substances needed to fight infection]) or by cancer that began in another part of the body but has spread to the bones. Pamidronate is also used to treat Paget's disease (a condition in which healthy bones are broken down and replaced by abnormally thick but weak bones). Pamidronate helps prevent bone breakdown and bone fractures. This medication is sometimes prescribed for other uses; ask your doctor or pharmacist for more information.

Your health care provider (doctor, nurse, or pharmacist) may measure the effectiveness and side effects of your treatment using laboratory tests and physical examinations. It is important to keep all appointments with your doctor. The length of treatment depends on your condition and on how you respond to the medication.

PrecautionsReturn to top

Before administering pamidronate,

tell your doctor and pharmacist if you are allergic to pamidronate, alendronate (Fosamax), etidronate (Didronel), risedronate (Actonel), tiludronate (Skelid), zoledronic acid (Zometa), any other medications, or any of the ingredients in pamidronate infusion. Ask your health care provider for a list of the ingredients.

tell your doctor and pharmacist what prescription and nonprescription medications, vitamins, nutritional supplements and herbal products you are taking or plan to take. Be sure to mention any of the following: amphotericin B (Fungizone); antibiotics such as amikacin (Amikin),bacitracin; dapsone (Avlosulfon);foscarnet (Foscavir); ganciclovir (Cytovene); gentamicin (Garamycin), kanamaycin (Kantrex),methicillin (Staphcillin);neomycin (Neo-Rx, Neo-Fradin), netilmycin (Netromycin), paramomycin (Humatin), pentamidine (NebuPent); polymyxin (Aerosporin);rifampin (Rifadin, Rimactane);sulfonamides such as sulfamethoxazole and trimethoprim (Bactrim);streptomycin, tobramycin (Tobi, Nebcin),and valganciclovir (Valcyte); aspirin and other nonsteroidal anti-inflammatory medications such as ibuprofen (Advil, Motrin), and naproxen (Aleve, Naprosyn); aurothioglucose (Solganal); auranofin (Ridaura); cancer chemotherapy medications captopril (Capoten); cyclophosphamide (Cytoxan, Neosar); cyclosporine (Neoral, Sandimmune); gold sodium thiomalate (Myochrysine); lidocaine (Xylocaine, others); certain medications to treat or prevent malaria; nitrates; oral steroids such as dexamethasone (Decadron, Dexone), methylprednisolone (Medrol), and prednisone (Deltasone); penicillamine (Cuprimine, Depen); salicylate pain relievers;and tacrolimus (Prograf).

tell your doctor if you have or have ever had an infection of the mouth or bones, gum disease or other problems with your teeth or mouth, or kidney or liver disease.

tell your doctor if you are pregnant or are breast-feeding. Use a reliable method of birth control during your treatment with pamidronate. If you become pregnant while using pamidronate, call your doctor. Pamidronate may harm the fetus. Also talk to your doctor if you plan to become pregnant at any time in the future because pamidronate may remain in your body for years after you stop using it.

if you are having surgery, tell the doctor that you are using pamidronate.

you should know that pamidronate may cause serious problems with your jaw, especially if you have dental surgery or treatment while you are using the medication. A dentist should examine your teeth and perform any needed treatments before you start to use pamidronate. Be sure to brush your teeth and clean your mouth properly while you are using pamidronate. Talk to your doctor before having any dental treatments while you are using this medication.Call your doctor if you have any of the following symptoms: jaw pain; pain, swelling, or infection of the gums; sores or cuts on the gums that do not heal; loosening of teeth; numbness or a feeling of heaviness in the jaw; drainage of fluid from the gum or jaw; or seeing any exposed bone in your mouth.

You should make sure your diet contains enough calcium and vitamins. You should discuss this with your health care provider.

Administering your medicationReturn to top

Before you administer pamidronate, look at the solution closely. It should be clear and free of floating material. Gently squeeze the bag or observe the solution container to make sure there are no leaks. Do not use the solution if it is discolored or if it contains particles. Use a new solution, but show the damaged one to your health care provider.

It is important that you use your medication exactly as directed. Do not stop your therapy on your own for any reason. Do not administer it more often or for longer periods than your doctor tells you. Do not change your dosing schedule without talking to your health care provider. Your health care provider may tell you to stop your infusion if you have a mechanical problem (such as blockage in the tubing, needle, or catheter); if you have to stop an infusion, call your health care provider immediately so your therapy can continue.

Side effectsReturn to top

Although side effects from pamidronate are not common, they can occur. Tell your doctor if any of these symptoms are severe or do not go away:

bone, joint, or muscle pain

slight fever

loss of appetite

upset stomach

vomiting

stomach pain

constipation

heartburn

weakness

dizziness

headache

increased sweating

If you experience any of the following symptoms, or those mentioned in the PRECAUTIONS section, call your health care provider immediately:

seizures

eye pain, swelling, itching, or redness

blurred vision or changes in vision

sensitivity to light

fast or irregular heartbeat

fainting

sore throat, high fever, chills, cough, or other signs of infection

unusual bruising or bleeding

black and tarry stools

red blood in stools

bloody vomit

vomiting material that looks like coffee grounds

shortness of breath or fast breathing

chest pain

numbness or tingling in the arms, legs, lips, tongue, or the area around the mouth

muscle cramps, spasms, or sudden muscle tightening

depression

personality changes

difficult, frequent, or painful urination

swelling of the face, throat, tongue, lips, eyes, hands, feet, ankles, or lower legs

difficulty swallowing

hoarseness

hives

rash

itching

Posted

Also May want to ask about this treatment Ketorolac

Pain associated with hypertrophic pulmonary osteoarthropathy (HPOA) may be extremely disabling and resistant to treatment. The successful use of ketorolac, a new non-steroidal anti-inflammatory drug, given by subcutaneous infusion is reported in two patients with uncontrolled pain caused by HPOA.

, a new non-steroidal anti-inflammatory drug, given by subcutaneous infusion is reported in two patients with uncontrolled pain caused by HPOA.

Ketorolac Info;

ketorolac

Brand name(s):

Toradol, Toradol IM, Toradol IV/IM

What is the most important information I should know about ketorolac?

Ketorolac is intended for short-term use only, usually up to 5 days. Do not use ketorolac for longer or in larger doses than is prescribed by your doctor. Larger doses or longer treatment may not provide increased pain relief, and may increase the risk of serious side effects.

Your healthcare provider may recommend taking oral ketorolac with food or milk to lessen stomach upset. Follow your doctor's instructions.

If you drink more than three alcoholic beverages a day, ketorolac may increase the risk of stomach bleeding. Talk to your doctor before taking ketorolac if you drink more than 3 alcoholic beverages a day.

What is ketorolac?

Ketorolac is in a class of drugs called nonsteroidal anti-inflammatory drugs (NSAIDs). Ketorolac works by reducing chemicals that cause inflammation and pain in the body.

Ketorolac is used to treat moderate pain.

Ketorolac may also be used for purposes other than those listed in this medication guide.

What should I discuss with my healthcare provider before taking ketorolac?

Do not take ketorolac without first talking to your doctor if you

You may not be able to take ketorolac, or you may require a dosage adjustment or special monitoring during treatment if you have any of the conditions listed above.

Ketorolac is in the FDA pregnancy category C. This means that it is not known whether ketorolac will be harmful to an unborn baby. However, ketorolac should not be taken during the last 3 months of pregnancy (the third trimester) because a similar drug is known to affect the baby's heart. Do not take ketorolac without first talking to your doctor if you are pregnant or could become pregnant during treatment.

Ketorolac passes into breast milk and may affect a nursing baby. Do not take this medicine without first talking to your doctor if you are breast-feeding a baby.

If you are over 65 years of age, you may be more likely to experience side effects from ketorolac. Your doctor may prescribe a lower dose of the medication.

How should I take ketorolac?

Take ketorolac exactly as directed by your doctor. If you do not understand these instructions, ask your pharmacist, nurse, or doctor to explain them to you.

Ketorolac is available as pills for administration by mouth and as a solution for injection into the muscle (intramuscular) or vein (intravenous). If you are using injectable ketorolac at home, your healthcare provider will give you detailed instructions regarding preparation, administration, and storage of the medication.

Take each oral dose with a full glass of water.

Your healthcare provider may recommend taking oral ketorolac with food or milk to lessen stomach upset. Follow your doctor's instructions.

Ketorolac is intended for short-term use only, usually up to 5 days. Do not use ketorolac for longer or in larger doses than is prescribed by your doctor. Larger doses or longer treatment may not provide increased pain relief, and may increase the risk of serious side effects.

Do not share this medication with others. Keep it out of the reach of children. Throw away any unused medication. Ketorolac may be harmful if used by someone for whom it was not prescribed.

Store ketorolac at room temperature away from moisture and heat.

What happens if I miss a dose?

Posted

I hope and pray they find some relief for your mom soon. Glad to hear she is feeling a little better. My husband was very fortunate the HPOA disappeared with surgery. He's not out of the woods yet, going through chemo now. But, he is pain free and has very little chemo side effects. Take care of mom. Barbara

Posted

My husband leg was also swelling, it was so big all the way to his knees. Orhtopedic surgeion diagnosed it as bakers cyst. He wanted to do a knee replacement on him and guess what? On the surgery prep, xrays - mass on the chest showed up. We ended up with lung cancer from a knee problem. After the lung surgery, his knees has been fine .. knock on wood. So yes, the swelling could definitely be a symptom to LC.

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