Severe muscle cramps in legs and hands.

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Severe muscle cramps in legs and hands.

by Jandy on Wed Sep 07, 2011 05:11 AM

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I'm a 61 year old female, diagnosed in Feb. 2010 with Stage IV NSCLC.  I have been an Oncology RN and Nursing Administrator for 30 years and suddenly found myself as the patient instead of the caregiver.  It's been a difficult transition!

I had begun having severe pain radiating down the back of the left thigh.  Being a nurse on my feet for all those years, the common train of thought is disc problems.  Treated as such and with x-rays not showing anything otherwise, it went on a month or so.  Finally with no reduction in pain, I went to another physician that did an MRI.  A mass was found surrounding my sciatic nerve.  It was removed and found malignant, the primary was found in my right lung. 

I had the initial chemo (yuck!) and things went well.  When Tarceva was approved as an ongoing treatment, I gladly went with it.

Sorry I went on but the gist of it is this.  I've been on Tarceva, 100mg a day for over a year (5ft 6in, 130 pounds).  I took the Tarceva for several months before I had my first eruption.  I occasionally break out with the facial rash which can extend over the chest and shoulders.  I just treat it gently, use the Clindamycin ointment on it,  and don't take the Tarceva for a day.  The rash will recede.  My doctor approves.  I've had severe problems with my fingernails but can live with that--just looks like I chew my nails.

My biggest problem is the severe muscle cramps in my feet and calves at night.  During the day occasionally,  my hands will cramp as well.  My scalp is also very reddened (no rash) and extremely itchy.  I tried the "no itch" shampoos and it felt like I was burning my head, so no more of that.  And, oddly enough, these leg cramps and head itching occurs at night.

Question:  My doctor says it is the Tarceva.  Obviously I value the treatment more than the side effects and am seeking some relief.  Does anyone out there have the same thing and if so, what are you doing that helps?  I had my regular appointment today, all labs are within normal limits. 

Thanks for any advice you might provide me!

Jandy

 

RE: Severe muscle cramps in legs and hands.

by shirllovesgod on Thu Sep 08, 2011 12:46 AM

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Please at least look int the Joanna Budwig protocol and the Budwig center.  It's cheap and non toxic, what have you got to loose!  Here are some links



http://www.whale.to/a/beckwith.html

Hope this helps, Shirley

RE: Severe muscle cramps in legs and hands.

by ginger1279 on Thu Sep 08, 2011 01:36 AM

Quote | Reply

On Sep 07, 2011 5:11 AM Jandy wrote:

I'm a 61 year old female, diagnosed in Feb. 2010 with Stage IV NSCLC.  I have been an Oncology RN and Nursing Administrator for 30 years and suddenly found myself as the patient instead of the caregiver.  It's been a difficult transition!

I had begun having severe pain radiating down the back of the left thigh.  Being a nurse on my feet for all those years, the common train of thought is disc problems.  Treated as such and with x-rays not showing anything otherwise, it went on a month or so.  Finally with no reduction in pain, I went to another physician that did an MRI.  A mass was found surrounding my sciatic nerve.  It was removed and found malignant, the primary was found in my right lung. 

I had the initial chemo (yuck!) and things went well.  When Tarceva was approved as an ongoing treatment, I gladly went with it.

Sorry I went on but the gist of it is this.  I've been on Tarceva, 100mg a day for over a year (5ft 6in, 130 pounds).  I took the Tarceva for several months before I had my first eruption.  I occasionally break out with the facial rash which can extend over the chest and shoulders.  I just treat it gently, use the Clindamycin ointment on it,  and don't take the Tarceva for a day.  The rash will recede.  My doctor approves.  I've had severe problems with my fingernails but can live with that--just looks like I chew my nails.

My biggest problem is the severe muscle cramps in my feet and calves at night.  During the day occasionally,  my hands will cramp as well.  My scalp is also very reddened (no rash) and extremely itchy.  I tried the "no itch" shampoos and it felt like I was burning my head, so no more of that.  And, oddly enough, these leg cramps and head itching occurs at night.

Question:  My doctor says it is the Tarceva.  Obviously I value the treatment more than the side effects and am seeking some relief.  Does anyone out there have the same thing and if so, what are you doing that helps?  I had my regular appointment today, all labs are within normal limits. 

Thanks for any advice you might provide me!

Jandy

 

Hello.  I am sorry for what you are going through.  This may sound reposterous but have you tried coconut oil on your hair and scalp?  Rub a generous amount on scalp and hair so that it is well covered.  You may want to wear an old towel around your shoulders becasue it may drip. Leave on for about 2 hours.  Blot up the escess with a towel or paper towels and wash hiar as normal.  the oild easily washes out. I would use organic coconut oil.  I would also take a tablespoon a day for its heatlh benefits.

Nearly 50 percent of the fat in coconut oil is of a type rarely found in nature called lauric acid, a "miracle" compound because of its unique health promoting properties. Your body converts lauric acid into monolaurin, which has anti-viral, anti-bacterial and anti-protozoa properties. (6)

Coconut oil is also nature's richest source of medium-chain fatty acids (MCFAs), also called medium-chain triglycerides or MCTs. By contrast, most common vegetable or seed oils are comprised of long chain fatty acids (LCFAs), also known as long-chain triglycerides or LCTs.

I hope this helps.

ginger1279

RE: Severe muscle cramps in legs and hands.

by Marysue on Thu Sep 08, 2011 02:16 AM

Quote | Reply

On Sep 08, 2011 12:46 AM shirllovesgod wrote:

Please at least look int the Joanna Budwig protocol and the Budwig center.  It's cheap and non toxic, what have you got to loose!  Here are some links



http://www.whale.to/a/beckwith.html "" target="_blank" rel="nofollow">http://www.whale.to/a/beckwith.html " target="_blank" rel="nofollow">http://www.whale.to/a/beckwith.html

Hope this helps, Shirley

Hi, I have been on 150mg. of tarceva daily for 5 yr. now. Yes I do get those leg cramps that I have to jump out of bed in the middle of the nights !! I am 5ft. tall and weigh 115lb. I've not experienced hand cramps, but my hair is kinky curly, and I"ve always had straight as a stick hair !! Tarceva comes with many side effects, but I am still here so I will tolerate it all for that !! Until I started taking tarceva my cancer was returning every two years, I was diagnosed in 2000, had 3 surgeries , chemo and radiation... For the last 5 years I have not had a reoccurance !!! So, tarceva is my friend !! I sure hope it goes that way for you !! Keep me updated and feel free to ask me anything !! I didnt know the leg cramps had anything to do with tarceva..... Stay positive !! Oh, by the way I am 62, lung cancer is genetic in my family, my mom died from it, as did my sister Sandy, also my sister Sheri has it.... All My Best, Sue

RE: Severe muscle cramps in legs and hands.

by ginger1279 on Thu Sep 08, 2011 02:44 AM

Quote | Reply

On Sep 07, 2011 5:11 AM Jandy wrote:

I'm a 61 year old female, diagnosed in Feb. 2010 with Stage IV NSCLC.  I have been an Oncology RN and Nursing Administrator for 30 years and suddenly found myself as the patient instead of the caregiver.  It's been a difficult transition!

I had begun having severe pain radiating down the back of the left thigh.  Being a nurse on my feet for all those years, the common train of thought is disc problems.  Treated as such and with x-rays not showing anything otherwise, it went on a month or so.  Finally with no reduction in pain, I went to another physician that did an MRI.  A mass was found surrounding my sciatic nerve.  It was removed and found malignant, the primary was found in my right lung. 

I had the initial chemo (yuck!) and things went well.  When Tarceva was approved as an ongoing treatment, I gladly went with it.

Sorry I went on but the gist of it is this.  I've been on Tarceva, 100mg a day for over a year (5ft 6in, 130 pounds).  I took the Tarceva for several months before I had my first eruption.  I occasionally break out with the facial rash which can extend over the chest and shoulders.  I just treat it gently, use the Clindamycin ointment on it,  and don't take the Tarceva for a day.  The rash will recede.  My doctor approves.  I've had severe problems with my fingernails but can live with that--just looks like I chew my nails.

My biggest problem is the severe muscle cramps in my feet and calves at night.  During the day occasionally,  my hands will cramp as well.  My scalp is also very reddened (no rash) and extremely itchy.  I tried the "no itch" shampoos and it felt like I was burning my head, so no more of that.  And, oddly enough, these leg cramps and head itching occurs at night.

Question:  My doctor says it is the Tarceva.  Obviously I value the treatment more than the side effects and am seeking some relief.  Does anyone out there have the same thing and if so, what are you doing that helps?  I had my regular appointment today, all labs are within normal limits. 

Thanks for any advice you might provide me!

Jandy

 

Hello.  Me again.

There is something else you may be interested in trying.   At first I thought it was nonsense.  It is called Oil Pulling.  Simple procedure.  You get a tablespoon of oil, such as sesame, and swish it around in your mouth.  I use coconut.  Do this for about 10 -30 minutes ( some people say 15, some say 30. ).  Do not swallow. Spit it out.  May I suggest you do a Google Scholar Search for oil pulling.  There are some interesting reports on the benefits of oil pulling, especially for oral hygene, and especially in Indian research.  There just maybe something to it.  Hope this helps.

ginger1279

RE: Severe muscle cramps in legs and hands.

by MargaretFT on Thu Sep 08, 2011 04:10 AM

Quote | Reply

Hi Jandy,

Congratulations on the successful removal of your malginant sciatic tumor! And being senstive to Tarceva is such a gift, in spite of all the side effects - I am grateful to advances in medicine every day.

I too have NSCLC stage 3A with surgery (right posterior lobectomy), chemo (as you write - yuck!) and now 2+ years very successfully on Tarceva, starting on 150 mgs. Has your oncologist considered trying on a lower dose? Every year after an annual PET scan my doctor drops the dose of Tarceva and 3 months later I have a CT scan to check that it is still enough. And I am now on 50 mgs/day. This is to decrease the side effects - she has found that patients who are sensitive to Tarceva are very sensistive to it, hence the dose-lowering. This lessens the side effects of course, as you have found by stopping the Tarceva for a day to lessen the effect of the rash.

I too get leg muscle cramps at night, but I also make sure I get enough salt and drink enough water, as I am very active, and I don't get them every night. Nor the head itching - have you tried a very mild gentle shampoo? - but as these symptoms are probably caused by the Tarceva, maybe you could try a lower dose as long as it continues to be enough.

Good luck!

Margaret 

RE: Severe muscle cramps in legs and hands.

by Margot807 on Thu Sep 08, 2011 07:12 PM

Quote | Reply

Jandy-

When I experienced cramps some time back, either as a result of chemo or other medication, nothing suggested by my doctors or my friends helped. Then I found the followiing from my acupuncturist and it provided immediate relief.

Ardisia16 by SevenForests. It's a combination of chinese herbs. I took far less than recommended dosage just before bedtime and it relieved my severe nightime cramps. Check with heath food stores or a local chinese herbalist. The distributor on the package is I.T.M. 2017 S.E. Hawthorne, Portland, OR 97214

Good Luck.

Margot

RE: Severe muscle cramps in legs and hands.

by pierluck on Thu Sep 08, 2011 09:26 PM

Quote | Reply

I too have leg and foot cramps.  Mine seem to happen in the early morning hours.  I have stage IV NSCLC and have been on Tarceva 150 for just over a year and the cramps just began a couple of months ago.  My doctor thought it might be the Lipitor I was taking, so I stopped that for 2 weeks.  The cramps lessened, but didn't go completely away.  After going through surgery to remove my right lower lobe and radiation and chemo (3 times - yuck! yuck! yuck!) these side effects are acceptable.  I will go back and tell my oncologist that there are others who have cramps from Tarceva.  Hang in there!

RE: Severe muscle cramps in legs and hands.

by Jandy on Thu Sep 08, 2011 10:30 PM

Quote | Reply

Thank all of you for your replies and suggestions!  There are several I'm wanting to try.  So many of you have had more difficult experiences than I that I feel almost petty for complaining about cramps caused by this wonderful medication.

The secondary lesion was removed by surgery on March 1, 2010.  I started 14 continuous rounds of radiation to that area within 2 weeks.  Chemo was started within one month.  I had the six rounds of intensive chemo.  Scans looked great-nothing showing on the hip and what was left in my lung was debatable.  Was it a scar or was it still a lesion?  Being a nurse that might make me a little more skeptical so I chose to wait and see if it decreased in size, stayed the same or disappeared.  Another scan time came and it was the same, no change.  This was encouraging, I was thinking scar.  I didn't want them going in and mucking around to release any possible satellites into the rest of my body.  Avastin was approved as an ongoing treatment and of course, I was on my Tarceva.  So, in addition to the Tarceva daily, I get Avastin infusions every two weeks.  Go in to the office, 30 minutes later I'm done and on my way to whatever I need to do.

I will have another scan in December.  This is my worst time, waiting for and then lying there for the scan.  It brings nightmares and horrible fears.  I guess I'll learn to live with it, but it doesn't seem like it's getting any easier.

Again, thanks to all, your kind words are more than appreciated.  If I can help anyone out there at all, please let me know, you're all wonderful and I know we're going to get through this together and better than we were!

RE: Severe muscle cramps in legs and hands.

by wanda40 on Thu Sep 08, 2011 11:26 PM

Quote | Reply

Try tonic water w/ quine. Fagos 99 cents a bottle. I take 4 oz. in a.m & 4oz. in evening. Works great for me. My  Oncologist told me to try it. I thought, he was nuts but it's working.

I have Multi- Myeloma w/ terrible sciatic problems & leg cramps.

Wanda

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