Cold Weather Tips For Peripheral Neuropathy

A few years ago, I lived with the hope that my chemotherapy-induced peripheral neuropathy (CIPN) would disappear over time. Since I'd had Taxol every week for six months, the CIPN side effect was not unexpected. The availability of cold socks/gloves/caps at that time was much less than it is now, and I only learned about those options after that treatment had ended. Still, those techniques are no guarantee CIPN won't set in and stick around.

Although I knew I was developing the condition and was careful to inform both my doctor and the nurses about how the tingling was developing, I am sure I downplayed the seriousness of the situation because the last thing I wanted was to end treatment before our previously agreed upon date.

So, now I live with CIPN and while I have had prescriptions for gabapentin issued, I have resisted this choice for personal reasons including the idea that it is more effective for painful neuropathy than the type I experience, which is numbness and tingling. It's hard living with CIPN that seems to be progressing overall, but that sometimes ebbs with factors I haven't been super successful at duplicating when I need them.

Cold weather, which can extend from November through March where I live, is especially brutal for those living with this side effect. Bottomline, commonsense steps can help maintain comfort during cold weather. I can't claim to have found the solution for CIPN for anyone else – or even myself – but I do know some good tips for cold-weather management:

Move. Although movement is not a cure for CIPN, it does help relieve stiff and numb hands and feet. I remember sitting in a cold truck with my brother-in-law, who had severe neuropathy, and watching him clench and unclench his hands. This movement can provide immediate help by warming hands (and toes, clench those as well) by getting circulation moving when it is not possible to take other steps. Full-body exercise also works to improve overall circulation, so include that as well if you are able.

Keep feet dry. One of the problems with CIPN is that it's hard to know what your fingers and feet are actually feeling. There have been times when I've kept on shoes after being outside only to find, after I finally notice that my feet are more uncomfortable than usual, that my socks are damp. I've learned to remove my shoes as soon as I come inside, even if my feet feel OK, and switch to a new pair of socks after checking to make sure my feet are not damp. It's a commonsense move that is easy to forget.

Gloves and socks. Even the warmest coverings aren't going to stop my CIPN from acting up in cold weather, but it is much worse if I decide to go without gloves, for instance, because that's what I could do before cancer. Just put on the warm gloves and socks (and keep them dry).

Wear a warm coat. If you have CIPN, you might have noticed that if you become cold by underdressing for the weather, the degree of pain or numbness in your peripheral areas becomes worse. That happens because circulation isn't being maintained and it can become more difficult to move your fingers (or toes). For CIPN in hands, it's particularly helpful to make sure even your forearms remain warm.

Walk safe. I've fallen enough times, both in cold weather and warm, to want to stay upright. Leave the heels or slippery flats at home or in your purse to switch into once inside. Instead, wear shoes or boots with traction that might help prevent you from sliding into a fall and keep hands out of pockets (wear gloves or mittens!), which not only gives you a chance to catch yourself if you start to fall, but can also help to prevent fingers from cramping or "freezing" into a bent position.

Use caution outdoors. While I used to love to sled for hours with my son, I know that cold can slow circulation to hands and feet, aggravate CIPN, and may cause additional nerve damage. I'm not going to give up the things that I enjoy, but I will do what I can to prevent further nerve damage. So, I try to keep an extra pair of socks and gloves with me when I go out to minimize the chance that I'll be in damp or cold clothing for too long and I take breaks indoors or in a warm car.

Pamper yourself. I've found that while it can sometimes hurt to have my feet touched, gently massaging lotion onto them (and my hands) does wonders. It increases circulation, gives me a chance to notice if I've hurt my feet anywhere, and also puts my hands to work. These moments of indulgence matter and are good for movement and warmth.

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Dom's AMAZING Week

This week has been full of surprises.

On Monday he complained to his Slidell Cancer Center doctor about his neuropathy acting up again.  It's slowly creeping up his leg.  Also the backs of his hands.

Dr. C. canceled his chemo and asked us to go to see Dr. Safah at the Tulane Cancer Center in NOLA.  (These 2 doctors work hand-in-hand, but Dr. Safah calls the shots.  We've elected to get treatments in Slidell out of convenience)

We happily got an appointment with Dr. Safah on Tuesday morning.

She was puzzled about the neuropathy, saying that Kyprolis RARELY causes neuropathy.  We told her that we didn't want him back in a wheelchair.  She understood that.

I said, "Doc-  his numbers are great.  The radiation shrunk the lesion (Plasmacytoma) to 20% of its original size.  Does he REALLY HAVE to have more chemo?"

She looked at his most recent numbers.  No M-Spike.  And much to our delight gave him the summer off of chemo.  She did another M-Spike test and wants us to have another in 3 months.  Just keeping an eye on it.

(The only reason that he was back on chemo was that solitary plasmacytoma on his left hip)

So, we're hopeful that it'll be another 8 years of remission and that no rogue cancer cells create problems for him.

That was our Christine's last day here.  She had been carting us around in her rental car.  We thought we'd go to one of our favorite joints, Crossroads Seafood and Grill, on the way home.

Dom had gotten a fried pork chop there about a year ago.  He said, oh wouldn't it be great if they had a pork chop lunch special?

We arrive.  We walk in.  LUNCH SPECIAL:  Fried Pork Chops!

We told the owner our wonderful news before being seated.

Had a delicious meal.  When we got the check, it was for ZERO.  The owner picked up the tab.  She's done that now THRICE.  What a doll!

So... it was a VERY GOOD DAY. 

That night, I found out that I had $100+ in unclaimed dividends sitting in Louisiana. WOW!

The stars were aligned!

Physical Therapy

Well, Dom started Physical Therapy on Monday.  Three days per week.  So far, so good.

He's still in a wheelchair, but they've got him strengthening his ankles and knees and walking with a walker.

His neuropathy is horrible.  He cannot feel his feet.

Our next appointment is with his Slidell oncologist in about 2 1/2 weeks.  Then Tulane Cancer Center the following week.

We're also back to weekly blood work.  He got a little "kooky/confused" on Wed., so we had blood work done today.  I pumped him full of salt Wed. afternoon, and he snapped out of his daze.

It's Been ROUGH Around Here

Dom's neuropathy has gotten so bad that he's now in a wheelchair.  He can't feel his feet.

A dear friend, Richard McM came over to build a wheelchair ramp for him.  Unfortunately, Dom is using my dad's old wheelchair-  probably 30 years old and HEAVY.  I can barely move it into my car.

On Wed., we had an appointment with Dr. Safah at Tulane.  She's going to arrange for a few weeks of physical therapy to get him walking again, then putting him back on a different chemo. She said that besides the neuropathy, his muscles have atrophied after a couple months of inactivity.

We came home very hopeful-  feeling positive- happy to be back with Dr. Safah.

We stopped to get some food to go on the way home.

Dom went to bed after eating.

I noticed that there was a message on the answering machine.

It was Dr. Safah's nurse telling us to get to an emergency room IMMEDIATELY.  His sodium was "critically low" at 120.  (Hyponatremia)

So... off we go to Our Lady of the Angels ER in Bogalusa, LA-  about 15 miles away.

The ER doctor told me to go home, as he would be admitted.

They finally put him in a private room at about 10 pm.  By that time, his sodium had dropped to 119.

They pumped him full of sodium and released him last night once he reached 130.

Got home around 7:30 pm.  He fell TWICE last night using a walker.  He cannot feel his feet or calves.

So, now I'm working on getting him a wheelchair.  Hoping that Tulane will do it.  He called our VA Rep this morning, and she said that if he got an appointment with the VA  (ha-ha), they'd pay for it.

I'm waiting to hear from Dr. Safah's folks to obtain a lightweight wheelchair that I can lift for him.

So-  kinda "gloom and doom" here.

Thanks for your continued prayers.

Dom is a Hurtin' Little Cowboy

Well, gang-  This Velcade/Revlimid treatment has really clobbered him.

Over the course of 8 days, he was admitted to 2 separate hospitals overnight.

His neuropathy started traveling up his legs, just below the knees.

He gets extremely dizzy and almost falls down.

Blood Pressure is either very low or slightly elevated.

He's seeing flashes of light.

He's now walking with a walker.

His hands are starting to go numb.

You get the idea-  he's a MESS.

So, his Slidell Oncologist took him off of Chemo.

We'll be heading to Tulane Cancer Center soon.  We have an appointment for the 31st, but they'll probably want him in there sooner.

(Thalidomide was like a walk in the park compared to this treatment!)

Reinventing Vietnam War History AGENT ORANGE KILLS

On August 10, 1961, America began spraying Agent Orange in Vietnam, Cambodia and Laos. Operation Ranch Hand waged herbicidal warfare for 10 years.

Around 20,000 sorties were flown. Other spraying was done from boats, trucks, or soldiers mounted with backpacks.

Over five million acres were contaminated. About 20% of South Vietnam was sprayed at least once.

Millions of gallons of dioxin-containing defoliant were used across vast areas. Concentrations were 50 times greater than for other defoliation purposes.

Horrific consequences followed.

Dioxin is one of nature’s most deadly substances. It’s both natural and man-made. It’s a potent carcinogenic human immune system suppressant. Minute amounts cause serious health problems and death.

Agent Orange kills! It accumulates in adipose tissue and the liver. It alters living cell genetic structures.

Exposure results in congenital disorders and birth defects. It causes cancer, type two diabetes, and numerous other diseases.

In 2009, the US Institute of Medicine reported evidence linking Agent Orange to soft-tissue sarcoma, non-Hodgkin’s lymphoma, chronic lymphocytic leukemia (including hairy-cell leukemia), Hodgkin’s disease, and chloracne.

It’s associated with prostate cancer, multiple myeloma, amyloidosis (abnormal protein deposits), Parkinson’s disease, porphyria cutanea tarda (a blood and skin disorder), ischemic heart disease, hypertension, type 2 diabetes, peripheral neuropathy, cancer of the larynx, lung, bronchea and trachea, as well as spina bifida in offspring of exposed parents.

Vietnam’s Red Cross links it to liver cancer; lipid metabolism disorder; reproductive abnormalities; development disabilities; paralysis; and congenital deformities like cleft lip, cleft palate, club foot, hydrocephalus, neural tube defects, fused digits, and muscle malformations.

Dioxin remains toxic for decades. It’s not water soluble. Nor easily degradable. It contaminates soil, foliage, air and water.

It can be inhaled, absorbed through skin, or gain bodily entry through eyes, ears, or other cavity passages. It enters the food chain. Crops, plants, animals, and sea life are poisoned.

Its effects killed millions of Southeast Asians. Many others were disabled and/or suffer from chronic illnesses. Future generations are affected like earlier ones.

Around three million US servicemen and women were harmed. So were many American civilians. Many died. Living victims suffer from diseases, birth defects, and other ill effects.

Agent Orange use was always controversial. Studies confirmed its enormous harm. Ecocide and genocide best describe it. Human studies provided damning evidence.

In the early 1970s, Vietnam veterans reported skin rashes, cancer, psychological symptoms, birth defects, and other health problems.
Victims perish to this day.

Entire Piece Here