New member

rozaroo

Hi there I have been lurking for a bit & decided to finally join in. I am seven weeks post
radiation & chemotherapy for stage 4 cancer of the tonsil. I must add that I have never
felt fatigue quite like this plus all of the other extra's that came along with this
illness. I truly enjoy the positive attitude of all of the members here as you have all
helped me to keep a positive attitude also. Plus not to mention answering many questions
that needed to be answered. I would like to thank all of you for that. At times I felt so
totally alone, then I would come on this site & feel much better. I have a question I had
35 radiation treatment's & 3 cisplatin. I am now having tremors in my fingertips & cramping
of my hands. Is anyone else familiar with this? My fingertip's feel numb at times. Plus
holding a glass of water is quite a challenge. Any help would be appreciated. Thank You!

soccerfreaks

Welcome
Sorry to find that you are a member (for the obvious reasons), but glad that you found the site.

Others will have far better answers than me, but the first culprit I would suspect is dehydration. Both chemotherapy and radiation can result in dehydration, as can altered eating habits, and I can say from personal experience that dehydration can lead to numbness in the fingers along with cramping in not just the fingertips but elsewhere: I have had painful neck cramps, for example, in the past, and I attribute them largely to dehydration.

But I could be wrong .

Again, welcome.

Hope and Humor!

Take care,

Joe

rozaroo

soccerfreaks said:

Welcome
Sorry to find that you are a member (for the obvious reasons), but glad that you found the site.

Others will have far better answers than me, but the first culprit I would suspect is dehydration. Both chemotherapy and radiation can result in dehydration, as can altered eating habits, and I can say from personal experience that dehydration can lead to numbness in the fingers along with cramping in not just the fingertips but elsewhere: I have had painful neck cramps, for example, in the past, and I attribute them largely to dehydration.

But I could be wrong .

Again, welcome.

Hope and Humor!

Take care,

Joe

New Member

Thank you for your reply Joe. I am on the feeding tube & have only lost 8 lb's total since
my journey started. However, I am sure I could manage to drink more water etc. I was just
wondering if anyone else had experienced this. Thank you for the warm wellcome Joe.

delnative

rozaroo said:

New Member

Thank you for your reply Joe. I am on the feeding tube & have only lost 8 lb's total since
my journey started. However, I am sure I could manage to drink more water etc. I was just
wondering if anyone else had experienced this. Thank you for the warm wellcome Joe.

Welcome, Rozaroo
The numbness in the fingertips is a common side effect of Cisplatin. (I don't know about other chemos, because Cisplatin is what I had.)
Now, almost 18 months out of treatment, I still have numbness in my fingertips. My fingers work fine -- being a reporter, I type for a living -- but the numbness is there. I notice it some times more than others.
But hey, if numb fingers is the worst you take away from this ordeal, you're truly blessed.

--Jim in Delaware

Hondo

Hi rozaroo

It could be any combinations of things that will cause tremor & numbness, one like Joe said dehydration, the other like Jim said the affects of Chemo, and the other depends on where you had your radiation. Radiation can affect and damage the nerve, if it keeps up suggest calling your doctor, maybe some type therapy can help ease the tension.

All the best to you and welcome to CSN

Kent Cass

delnative said:

Welcome, Rozaroo
The numbness in the fingertips is a common side effect of Cisplatin. (I don't know about other chemos, because Cisplatin is what I had.)
Now, almost 18 months out of treatment, I still have numbness in my fingertips. My fingers work fine -- being a reporter, I type for a living -- but the numbness is there. I notice it some times more than others.
But hey, if numb fingers is the worst you take away from this ordeal, you're truly blessed.

--Jim in Delaware

Welcome
Around 10-months, post-treatment, I started with what has gradually gotten more extreme- a lack of control, and at the same time a major tingling of what must be nerve endings on my entire upper-right side- shoulder and below, all the way up the right-side of my neck. I was aggressive Cisplatin, and have wondered if such is the cause. Jim, Joe, Hondo, and many others have more experience than I, as well as knowledge.

Rozaroo- welcome. Always good to welcome another post-treatment Survivor of H&N. We would all like to hear about you and your battle with the Big C. All such testimony is welcome, along with the very positive fact that you are one of us= a Survivor.

kcass

soccerfreaks

rozaroo said:

New Member

Thank you for your reply Joe. I am on the feeding tube & have only lost 8 lb's total since
my journey started. However, I am sure I could manage to drink more water etc. I was just
wondering if anyone else had experienced this. Thank you for the warm wellcome Joe.

!
Good for you! The fact you have lost little weight is excellent news. I would advise that you not let your guard down in that regard, but also that you not put on weight simply to have weight: exercise, even if it is 'only' a walk in the neighborhood, is a great thing to do for both physical and emotional reasons.

As others have begun to offer some other reasons for your numbness, also consider neuropathy as a culprit. Ask your docs about it. They will not be surprised by the question as it is another side-effect of chemotherapy.

In that regard, you may find that your doctors are not giving you all of the facts all of the time. I have found that they have reasons for this: they do not want to fill your head with pre-conceived notions. In my case, I was not advised about the potential for so-called 'anticipation nausea' with respect to chemo until I had, um, upchucked in OncoMan's sink one time while waiting to go in to the bowels of the ChemoDrome. I still think he was wrong in my case, but when he brought it up, explaining that he had never brought it up prior because he didn't want me to ANTICIPATE anticipation nausea, I had to laugh.

It makes sense, though: self-fulfilling prophecy, wish-fulfillment, that sort of thing, our doctors want us to avoid.

But, I ramble. Ask about neuropathy. I'm not sure what can be done for it, but if it is that, at least you will know.

Take care,

Joe

soccerfreaks

delnative said:

Welcome, Rozaroo
The numbness in the fingertips is a common side effect of Cisplatin. (I don't know about other chemos, because Cisplatin is what I had.)
Now, almost 18 months out of treatment, I still have numbness in my fingertips. My fingers work fine -- being a reporter, I type for a living -- but the numbness is there. I notice it some times more than others.
But hey, if numb fingers is the worst you take away from this ordeal, you're truly blessed.

--Jim in Delaware

hmmm
I did not know that about Cisplatin, Jim. I am four years out from Cisplatin (although only two from Carboplatin and Taxol) and still have numbness.

As a reporter once myself, longtime writer, and computer programmer since the dawn of civilization as we now know it (1980), I have recently considered the idea that all of the pounding on plastic keys might be suspect.

The benefit has been less time with the TV remote in hand, although it must be clear that I am still pounding on the language piano for better or for worse.

Your confession (:)) explains the dapper fedora.

Take care,

Joe

CajunEagle

rozaroo said:

New Member

Thank you for your reply Joe. I am on the feeding tube & have only lost 8 lb's total since
my journey started. However, I am sure I could manage to drink more water etc. I was just
wondering if anyone else had experienced this. Thank you for the warm wellcome Joe.

Numbness........boooooo
Good grief, I can't seem to get rid of the tingling/numbness in both my feet and hands. Treatment stopped on June 6th, 09 of 36 rads....8 cisplatin...2 taxtera.....and 2 rounds of the lovely 5FU. I have the hardest time buttoning a shirt or tying anything. Fine motor skills are shot for right now. The scary part is that I got a pretty bad sore on the bottom of my heel due to having a small rock in my shoe that I didn't realize was there. Life is really bad when they are biting like crazy, and you can't tie your hook on monofiliment within 15 minutes. But hey...........I'm a happy guy.

Skiffin16

Neuropathy
First welcome to this site....

I also had Tonsil Cancer STG III, Cisplaten was one of my chemo drugs along with Taxotere, and 5FU (three cycles of all three), then seven weeks of Carboplaten and 35 rounds of radiation.

Like Joe said, de-hydration could be adding to the fatigue (but chemo and radiation will add to fatigue as well) and cramping. But one thing that I would definitely ask about would be neuropathy. I was advised several times to be on the look out for any numbing of the fingers or toes. I was asked about it after each dose of chemo. From my understanding it can become nasty and if not addressed could become lasting.

During chemo treatment it's my understanding that they can adjust dosages of chemo to help relieve the effects. So I would at least mention it to your medical professionals and tell them of your symptoms....

John

Scambuster

Skiffin16 said:

Neuropathy
First welcome to this site....

I also had Tonsil Cancer STG III, Cisplaten was one of my chemo drugs along with Taxotere, and 5FU (three cycles of all three), then seven weeks of Carboplaten and 35 rounds of radiation.

Like Joe said, de-hydration could be adding to the fatigue (but chemo and radiation will add to fatigue as well) and cramping. But one thing that I would definitely ask about would be neuropathy. I was advised several times to be on the look out for any numbing of the fingers or toes. I was asked about it after each dose of chemo. From my understanding it can become nasty and if not addressed could become lasting.

During chemo treatment it's my understanding that they can adjust dosages of chemo to help relieve the effects. So I would at least mention it to your medical professionals and tell them of your symptoms....

John

Funny you all mention....
I also have been experiencing a weird sensation, more like a tingling all down my back from the head to the top of my butt. This happens only when I bend my head right down forward. It only last a second after doing this (I can hear one of saying " So don't bend your head down..")

My gut feeling is that it may be more as a result of the Rads. It hasn't got any worse since about Christmas. Treatment was over early October. Maybe just another unexplained mystery.

Cheers
Scam

rozaroo

Scambuster said:

Funny you all mention....
I also have been experiencing a weird sensation, more like a tingling all down my back from the head to the top of my butt. This happens only when I bend my head right down forward. It only last a second after doing this (I can hear one of saying " So don't bend your head down..")

My gut feeling is that it may be more as a result of the Rads. It hasn't got any worse since about Christmas. Treatment was over early October. Maybe just another unexplained mystery.

Cheers
Scam

New Member

Thank you all for your valuable input. I will be calling my cancer centre today & hopefully
will get some answers or an appointment with my Chemo Dr. I simpy would like to rule out
anything serious & best to be safe than sorry. The hand tremor's can be nasty also.
I thought I was doing pretty good until this. I am having thrush issues from dry mouth,
salicary glads got damaged. However, I am still here to complain about it & to me that is a
good thing lol! Thank you all for the warm wellcome. I so appeciate it as I was nervous to
post as my typing skill's are lacking. I look foward to sharing our latest adventure's with
all of you.

Kimba1505

New too: front end of treatment
Congratulations on getting through treatment. I cannot offer any feedback about the tingling fingers; but can say being on these boards at the jump has been EXTREMELY helpful in building a knowledge base and being prepared for what we are told by doctors and what is to come treatment/side effects-wise. My partner, also diagnosed with stage 4 tonsil is about to begin with a 3 stage surgery and then 5-7 weeks rad. with 3 big doses of cisplatin (beginning, middle, and end). So I am VERY interested in what that was like for you. I know everyone is different, but I like to hear the stories so I can hope for the best and prepare for the worst.
Kim

Skiffin16

Scambuster said:

Funny you all mention....
I also have been experiencing a weird sensation, more like a tingling all down my back from the head to the top of my butt. This happens only when I bend my head right down forward. It only last a second after doing this (I can hear one of saying " So don't bend your head down..")

My gut feeling is that it may be more as a result of the Rads. It hasn't got any worse since about Christmas. Treatment was over early October. Maybe just another unexplained mystery.

Cheers
Scam

Scambuster
Scam,

DelNative knows the answer to your sensation. I can't remember it at the moment, but it is very common to patients (like us) that have had H&N radiation. It is actually similar to a disease, but in our case it just somewhat mimics that sensation....I'll see if I can find his post on it unless he chimes back in soon.

I get that same sensation when I bend my head forward. I feel it all the way to my toes. It's like a tingling sensation, it is more intense the first few times I do it, then kind of is less intense. Nothing that bothers me at all, it's just there. One of our little hidden jewels of treatment. Along with, turkey, dry mouth, lack of taste, etc....LOL.

I found it, it's called Lhermitte's Symptom or Sign...

John

Scambuster

Skiffin16 said:

Scambuster
Scam,

DelNative knows the answer to your sensation. I can't remember it at the moment, but it is very common to patients (like us) that have had H&N radiation. It is actually similar to a disease, but in our case it just somewhat mimics that sensation....I'll see if I can find his post on it unless he chimes back in soon.

I get that same sensation when I bend my head forward. I feel it all the way to my toes. It's like a tingling sensation, it is more intense the first few times I do it, then kind of is less intense. Nothing that bothers me at all, it's just there. One of our little hidden jewels of treatment. Along with, turkey, dry mouth, lack of taste, etc....LOL.

I found it, it's called Lhermitte's Symptom or Sign...

John

Numb A**
Hey John,

Tx for the quick feedback. It is actually a relief to hear I am not the only one getting the numb a** thing going on. I first thought "Oh No ! MS ..." or something else horrible as I had a friend of my brothers pass away last year at 43 with a nasty Motor Neuron degenerative disease. You know how when you're going through treatment and recovery, you think every little senstation is bound to anohter cancer or something bad. Whew! I will await you or big Jim the Sniffer's reply with further news.

Have a good weekend.

Cheers John.
Scambuster

Skiffin16

Scambuster said:

Numb A**
Hey John,

Tx for the quick feedback. It is actually a relief to hear I am not the only one getting the numb a** thing going on. I first thought "Oh No ! MS ..." or something else horrible as I had a friend of my brothers pass away last year at 43 with a nasty Motor Neuron degenerative disease. You know how when you're going through treatment and recovery, you think every little senstation is bound to anohter cancer or something bad. Whew! I will await you or big Jim the Sniffer's reply with further news.

Have a good weekend.

Cheers John.
Scambuster

Lhermitte's Symptom or Sign...
Scam,

I found it, it's called Lhermitte's Symptom or Sign...

John

Landranger25

Kimba1505 said:

New too: front end of treatment
Congratulations on getting through treatment. I cannot offer any feedback about the tingling fingers; but can say being on these boards at the jump has been EXTREMELY helpful in building a knowledge base and being prepared for what we are told by doctors and what is to come treatment/side effects-wise. My partner, also diagnosed with stage 4 tonsil is about to begin with a 3 stage surgery and then 5-7 weeks rad. with 3 big doses of cisplatin (beginning, middle, and end). So I am VERY interested in what that was like for you. I know everyone is different, but I like to hear the stories so I can hope for the best and prepare for the worst.
Kim

I too have the tingling
I too have the tingling sensation down my spine to my toes if I bend my head forward too far. In a recent post I mentioned that I was having some weakness in my shoulders and arms and I thought it was from the radiation. About 5 or 6 years ago I was having trouble with a crushed disc in my cervical spine area and ended up having a C-5,6 fusion. No amount of physical therapy or muscle strengthening would aleviate my discomfort and pain. Things have been great for me since the fusion. After thinking about what I was experiencing in my shoulders and arms this past week I thought perhaps because of my weakened physical condition from my treatment that I was haveing disc trouble again. I went to the chiroprater this week and now feel much better although not as well as before. I am hoping a few more days of rest and a followup visit next week will get me back to normal. I will also ask regarding the Lhermitte's symptom. Thanks all.

Mike

rozaroo

Kimba1505 said:

New too: front end of treatment
Congratulations on getting through treatment. I cannot offer any feedback about the tingling fingers; but can say being on these boards at the jump has been EXTREMELY helpful in building a knowledge base and being prepared for what we are told by doctors and what is to come treatment/side effects-wise. My partner, also diagnosed with stage 4 tonsil is about to begin with a 3 stage surgery and then 5-7 weeks rad. with 3 big doses of cisplatin (beginning, middle, and end). So I am VERY interested in what that was like for you. I know everyone is different, but I like to hear the stories so I can hope for the best and prepare for the worst.
Kim

New Member
Thank you all for your helpfullness. Kimba mine started with a lump a few years back so I
promptly made a dental appointment. The dental surgeon said it was nothing but a bacterial
infection & my troubles wold be over after removing my lower teeth. I forgot about it for
a bit my stupidity! Well as we know it ended up being stage 4 cancer. I had no surgery but
did have 35 radiation teatment's & 3 rounds of cisplatin. Started out okay was eating for
50.
It was like my body was in the know.I a not a big woman but I gained quite a bit of weight.
That was a good thing. Radiation was fine for the first bit even first bout of Chemo I was
still eatingby mouth. Even though the feeding tube was in place. A week aftr that all hell
broke loose. If it was not for my hubby I still think i would not have made it. My appetite
was done. I could not sleep no energy. plus sick to my stomach every morning. Next bout of
chemo the second I was very ill diarreah & vomiting, hubby was trying to keep me hydrated
by the feeding tube. He kept a journal of my feeding times & how many cans at that feeding
time i would consume also my meds etc. The Dr's were impressed if they asked a question the
answer was in the Journal. He gave up quite a bit to look after me. I know I could not have
made it without him. Plus the feeding tube is a must. I found the last two weeks of
treatment to be my worste. The chemo Dr was going to cancel my last session of cisplatin.
however, we went ahead with a milder dose. I was still ill but not as bad. At this point my
neck was quite red even after using aloe vera constantly. I was prescribed a great burn
cream.
The name was flamazine & also a prescription for Hyderm as my radiologist was away & another
Dr prescribed it.my neck is now 100%. I use galaxal base on it nightly to keep it soft.I am
7 weeks post teatment. Dry mouth issues plus fatigue but alive!

delnative

Skiffin16 said:

Lhermitte's Symptom or Sign...
Scam,

I found it, it's called Lhermitte's Symptom or Sign...

John

Yup, that's it
I just touched my chin to my chest and got a momentary L'hermitte's Sign buzz up my spine.
Gee, 40 years ago I'd probably have paid good money to get a sensation like that.
Funny how times change ...

--Jim in Delaware (who at this very moment is listening to the 1973 Who Quadrophenia concert in Philly that did more harm to his hearing than Cisplatin)

Kent Cass

rozaroo said:

New Member
Thank you all for your helpfullness. Kimba mine started with a lump a few years back so I
promptly made a dental appointment. The dental surgeon said it was nothing but a bacterial
infection & my troubles wold be over after removing my lower teeth. I forgot about it for
a bit my stupidity! Well as we know it ended up being stage 4 cancer. I had no surgery but
did have 35 radiation teatment's & 3 rounds of cisplatin. Started out okay was eating for
50.
It was like my body was in the know.I a not a big woman but I gained quite a bit of weight.
That was a good thing. Radiation was fine for the first bit even first bout of Chemo I was
still eatingby mouth. Even though the feeding tube was in place. A week aftr that all hell
broke loose. If it was not for my hubby I still think i would not have made it. My appetite
was done. I could not sleep no energy. plus sick to my stomach every morning. Next bout of
chemo the second I was very ill diarreah & vomiting, hubby was trying to keep me hydrated
by the feeding tube. He kept a journal of my feeding times & how many cans at that feeding
time i would consume also my meds etc. The Dr's were impressed if they asked a question the
answer was in the Journal. He gave up quite a bit to look after me. I know I could not have
made it without him. Plus the feeding tube is a must. I found the last two weeks of
treatment to be my worste. The chemo Dr was going to cancel my last session of cisplatin.
however, we went ahead with a milder dose. I was still ill but not as bad. At this point my
neck was quite red even after using aloe vera constantly. I was prescribed a great burn
cream.
The name was flamazine & also a prescription for Hyderm as my radiologist was away & another
Dr prescribed it.my neck is now 100%. I use galaxal base on it nightly to keep it soft.I am
7 weeks post teatment. Dry mouth issues plus fatigue but alive!

thank you
-for your history, rozaroo. Very good to hear of your pro-PEG testimony. 7-weeks, now, and your future will be months, then years...

Believe

kcass

rozaroo

Kent Cass said:

thank you
-for your history, rozaroo. Very good to hear of your pro-PEG testimony. 7-weeks, now, and your future will be months, then years...

Believe

kcass

New member

Thank you for your positive outlook & kind words Kent!