Now What...?

Options
idlehunters
idlehunters Member Posts: 1,787 Member
I have been having areas of my body go numb. strange areas.... Like the tip of my left shoulder blade....my hands tingle and feel like they are asleep as do my feet when I sit on the toilet. I have noticed a weakness in my elbows....so much so that it is noticeable when I hold a drink in my hands. Last night I noticed the same thing is happening in my knees and today my left knee is so weak it is causing difficulty in walking. It don't hurt it just feels swollen and numb but it is not swollen. What the heck? I am on Vectibix only. Never been on no Oxy so numbing not from that. Anyone else get these numbing feelings in your joints?

Jennie
«1

Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Options
    Dear Jennie
    I have no experience with this type of problem, but think you have more than enough reason to contact your doctor.

    Hopefully there will be a quick and easy fix...like drinking more water or eating more chocolate!

    Hugs,

    Marie who loves kitties
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    Options

    Dear Jennie
    I have no experience with this type of problem, but think you have more than enough reason to contact your doctor.

    Hopefully there will be a quick and easy fix...like drinking more water or eating more chocolate!

    Hugs,

    Marie who loves kitties

    LoL....oh Marie
    I just love you! Eat more chocolate.... Oh my gosh I loved that....if life could just be that easy it would be awesome. Thanks for the laugh. I am thinking maybe it's a bursitis of sorts. I am not a very active person. But yesterday spent many hours walking at the mall and now today my knee is messed up? Maybe a connection? But that don't answer questions about my elbows or other numb areas...... I am going to speak to my doc just to see what he thinks. Thanks Marie

    Jennie
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Options
    Jennie
    Cancer and the associated fallout from the treatments, "is the gift that keeps on givin' - the whole year 'round."

    Now, maybe I can walk with you without being at the tail end of the group, now that you're slowing down:)

    Don't know, Jennie...what might be the problem. I wouldn't overrule or underestimate the side effects from the Vectibix "that you think" has just been easey-peasey.

    You know better than that, darlin' - anything we take or do has the old science theories apply..."For every reaction - there is an opposite and equal reaction."

    The problem that you're discovering, that I have known for many years, is that we just don't get better with treatments...whatever we gain - something else is lost...like "6 one way - 1/2 dozen the other."

    I've had breakdows upon breakdowns - though have been able to mostly hold it all together and remain functional and of mild benefit to society, by being able to hold on to my career and be productive....but it comes at such a high price.

    It's harder and harder each morning to do TODAY what I did just YESTERDAY.

    Obviously, this sounds like some type of nerve disorder or nerve problem. It could be your new drug, or it might just be cumulative catch-up for all that you've done to date. No way to really tell - unless you drop the Vecitibix and see if you improve.

    And really, Jennie - just staying with a drug "in the hopes" that something won't come back up? You know that really doesn't work, don't you? While it's been relatively easy on you, you must also recognize "That in order to get this - you have to pay That."

    At some point, the bill always comes due....which is why when I'm off the drugs, I'm off...no maintenance, no mop-up or any of those false terms. The truth is you would probably get about the same amount of time with or without 'the maintenance.'

    Only you would feel better - and while Vectibix has not hurt you to date (that you know of), the worm may be turning and your body starting to act out on you.

    That's the best I can come up with today, honey - and if you and I were sippin' on a refreshing beverage, I would tell you the exact same thing.

    I would run it by your onc of course...and it might be interesting to back off and see whether this symptom subsides - stays the same - or intensifies.

    This might answer a good many things.

    "Now What?"

    Well, with you, I'm always guessin' LOL!

    The answer must come from "Roseanne Roseannadanna..."

    Roseannadanna's response would be, "Well, Jennie, it just goes to show you, it's always something--if it ain't one thing, it's another."


    -Craig
  • steveandnat
    steveandnat Member Posts: 886
    Options
    craig makes good sense
    All this crap that we are putting into our bodies has to be something crazy. I think our nerves are slowly being wiped out. I can feel it in my own body. Praying that it is only temporary. Jeff
  • Lifeisajourney
    Lifeisajourney Member Posts: 216
    Options
    May 09 took last chemo #7 folfox
    was put in hospital for allergic reaction -10 days told to go home and recover. Have tingling feeling in hands/feet-very few shoes can be worn and a very tight feeling in abdominal area -adhesions? Was 3B. 3/11 mets to liver-resection at cancer hospital.not able to complete.-liver was not viable due to be being fatty and loaded with toxic areas thought to be from chemo....onc would not recommend chemo before surgery as normal. So I decided no more chemo. Surgery was 6/1/11...still don't feel like I did before chemo but I am alive. I firmly believe chemo would have killed me or at least made my time left very miserable. So I went for for quality vs quantity. Don't know if right for anyone else, but I am ok with it. My point is that chemo is probably good for quantity not so great for quality. Keep my port in just in case I change my mind. Don't want to be a downer, but I do believe there is a trade off to live longer which we all have to address....good luck with your journey...Pat
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    Options
    Sundanceh said:

    Jennie
    Cancer and the associated fallout from the treatments, "is the gift that keeps on givin' - the whole year 'round."

    Now, maybe I can walk with you without being at the tail end of the group, now that you're slowing down:)

    Don't know, Jennie...what might be the problem. I wouldn't overrule or underestimate the side effects from the Vectibix "that you think" has just been easey-peasey.

    You know better than that, darlin' - anything we take or do has the old science theories apply..."For every reaction - there is an opposite and equal reaction."

    The problem that you're discovering, that I have known for many years, is that we just don't get better with treatments...whatever we gain - something else is lost...like "6 one way - 1/2 dozen the other."

    I've had breakdows upon breakdowns - though have been able to mostly hold it all together and remain functional and of mild benefit to society, by being able to hold on to my career and be productive....but it comes at such a high price.

    It's harder and harder each morning to do TODAY what I did just YESTERDAY.

    Obviously, this sounds like some type of nerve disorder or nerve problem. It could be your new drug, or it might just be cumulative catch-up for all that you've done to date. No way to really tell - unless you drop the Vecitibix and see if you improve.

    And really, Jennie - just staying with a drug "in the hopes" that something won't come back up? You know that really doesn't work, don't you? While it's been relatively easy on you, you must also recognize "That in order to get this - you have to pay That."

    At some point, the bill always comes due....which is why when I'm off the drugs, I'm off...no maintenance, no mop-up or any of those false terms. The truth is you would probably get about the same amount of time with or without 'the maintenance.'

    Only you would feel better - and while Vectibix has not hurt you to date (that you know of), the worm may be turning and your body starting to act out on you.

    That's the best I can come up with today, honey - and if you and I were sippin' on a refreshing beverage, I would tell you the exact same thing.

    I would run it by your onc of course...and it might be interesting to back off and see whether this symptom subsides - stays the same - or intensifies.

    This might answer a good many things.

    "Now What?"

    Well, with you, I'm always guessin' LOL!

    The answer must come from "Roseanne Roseannadanna..."

    Roseannadanna's response would be, "Well, Jennie, it just goes to show you, it's always something--if it ain't one thing, it's another."


    -Craig

    Hey craiger....
    No...I didn't say Vectibix was Easey- peasey..... I said it was the easiest ON ME of everything I have done thus far. And SO FAR....it has been.....now what is going on now MAY be related to Vectibix....MAY be from one of the other things I have done....who the heck knows. Like you said...sooner or later it will come time to pay the piper. Well, that SOB is one overcharging piece of feces!!!

    I do know I will be talking to all docs in the coming days and it is time for me to make a major decision on my path. Stay tuned....

    Jen
  • dorookie
    dorookie Member Posts: 1,731 Member
    Options

    LoL....oh Marie
    I just love you! Eat more chocolate.... Oh my gosh I loved that....if life could just be that easy it would be awesome. Thanks for the laugh. I am thinking maybe it's a bursitis of sorts. I am not a very active person. But yesterday spent many hours walking at the mall and now today my knee is messed up? Maybe a connection? But that don't answer questions about my elbows or other numb areas...... I am going to speak to my doc just to see what he thinks. Thanks Marie

    Jennie

    OH NO
    it keeps you from holding a DRINK in your hand, you best be getting to the doctor Girl, vuz me knows you and if you cant have a drink in your hand, you will not be fit to live with...LMAO..

    But seriously, have you called your DR? might be some kind of a weird side effect...Let us know..

    Love you
    HUGS
    Beth
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Options

    Hey craiger....
    No...I didn't say Vectibix was Easey- peasey..... I said it was the easiest ON ME of everything I have done thus far. And SO FAR....it has been.....now what is going on now MAY be related to Vectibix....MAY be from one of the other things I have done....who the heck knows. Like you said...sooner or later it will come time to pay the piper. Well, that SOB is one overcharging piece of feces!!!

    I do know I will be talking to all docs in the coming days and it is time for me to make a major decision on my path. Stay tuned....

    Jen

    J:)
    I don't know why I used that phrase - I don't even like those two words.

    I know it has been going pretty good for you...I'm along the lines of backing off for a cycle, maybe two and see what happens.

    There is usually "cause and effect." The introduction of this drug with the new issues can lead one to believe this might be the cause - you already know the effect.

    I can't see it being from the cyberknife or anything like that. It would be easy for the onc to dismiss the claims - temporarily stopping might yield the answer to this quiz.

    I hope you don't have to stay on this too long...
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    Options

    Hey craiger....
    No...I didn't say Vectibix was Easey- peasey..... I said it was the easiest ON ME of everything I have done thus far. And SO FAR....it has been.....now what is going on now MAY be related to Vectibix....MAY be from one of the other things I have done....who the heck knows. Like you said...sooner or later it will come time to pay the piper. Well, that SOB is one overcharging piece of feces!!!

    I do know I will be talking to all docs in the coming days and it is time for me to make a major decision on my path. Stay tuned....

    Jen

    ????
    Hey Jen,
    It's hard to keep everybody's running plays and score card accurately in the forebrain. An update on treatment history in My CSN Space might help us comment more intelligently. Hope you can work a few things out with the onc, $$$ and sense.
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    Options
    dorookie said:

    OH NO
    it keeps you from holding a DRINK in your hand, you best be getting to the doctor Girl, vuz me knows you and if you cant have a drink in your hand, you will not be fit to live with...LMAO..

    But seriously, have you called your DR? might be some kind of a weird side effect...Let us know..

    Love you
    HUGS
    Beth

    Hey Beth...
    You DO know me toooooo good girl! Yep, I gotta get this prob under control and fast! You take care

    Jennie
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    Options

    May 09 took last chemo #7 folfox
    was put in hospital for allergic reaction -10 days told to go home and recover. Have tingling feeling in hands/feet-very few shoes can be worn and a very tight feeling in abdominal area -adhesions? Was 3B. 3/11 mets to liver-resection at cancer hospital.not able to complete.-liver was not viable due to be being fatty and loaded with toxic areas thought to be from chemo....onc would not recommend chemo before surgery as normal. So I decided no more chemo. Surgery was 6/1/11...still don't feel like I did before chemo but I am alive. I firmly believe chemo would have killed me or at least made my time left very miserable. So I went for for quality vs quantity. Don't know if right for anyone else, but I am ok with it. My point is that chemo is probably good for quantity not so great for quality. Keep my port in just in case I change my mind. Don't want to be a downer, but I do believe there is a trade off to live longer which we all have to address....good luck with your journey...Pat

    Onc busy....
    I called Onc this morning to report side effects and request an appointment. I was told to take NSAIDs for joint pain and he can't see me till April 10th. WHAT???? I didn't even get to tell the nurse ALL the side effects I was having. She just kept trying to get me off the phone like I was bothering her. I told her about the joint pain and blurred vision. She said I see in your records that you have seen a neurologist in the past....yes..so?..... Well maybe you are having a brain issue that is causing the blurred vision you should call that doctor..... Are you friggin serious????? She said you haven't had a treatment in 3 weeks...it CANT be the Vectibix....again, are you friggin serious? Do you not know what the word cumulative means? Are YOU a doctor.NOOOOOO. So, she said she would pass on my half info to Onc....thanks but no thanks. I will be seeking a new Onc. She also said to come in for my treatment Friday. Why the heck would I want more of what is possibly giving me all these problems? Why would they want me to continue treatment before even addressing a possible problem? That makes no sense to me. So NO I am not going for no more treatment until I get some answers and NO I will not wait until April 10th for medical assistance. TIME is not my friend....or anyone's friend with stage IV cancer. Calling my TCM doc next. Guess we will see what he has to offer.

    Jennie
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    Options
    tanstaafl said:

    ????
    Hey Jen,
    It's hard to keep everybody's running plays and score card accurately in the forebrain. An update on treatment history in My CSN Space might help us comment more intelligently. Hope you can work a few things out with the onc, $$$ and sense.

    Hey Tans...
    Yes, I agree. I need to update my CSN page. Need one of those "roundtoits" thanks tans

    Jennie
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    Options

    Onc busy....
    I called Onc this morning to report side effects and request an appointment. I was told to take NSAIDs for joint pain and he can't see me till April 10th. WHAT???? I didn't even get to tell the nurse ALL the side effects I was having. She just kept trying to get me off the phone like I was bothering her. I told her about the joint pain and blurred vision. She said I see in your records that you have seen a neurologist in the past....yes..so?..... Well maybe you are having a brain issue that is causing the blurred vision you should call that doctor..... Are you friggin serious????? She said you haven't had a treatment in 3 weeks...it CANT be the Vectibix....again, are you friggin serious? Do you not know what the word cumulative means? Are YOU a doctor.NOOOOOO. So, she said she would pass on my half info to Onc....thanks but no thanks. I will be seeking a new Onc. She also said to come in for my treatment Friday. Why the heck would I want more of what is possibly giving me all these problems? Why would they want me to continue treatment before even addressing a possible problem? That makes no sense to me. So NO I am not going for no more treatment until I get some answers and NO I will not wait until April 10th for medical assistance. TIME is not my friend....or anyone's friend with stage IV cancer. Calling my TCM doc next. Guess we will see what he has to offer.

    Jennie

    i hope you get real good health, real fast
    I don't doAspirin due its liver impact, see my blog.
    But I would get help ASAP, 10th April is what I would expect from busy Onc's, I wished all Onc's would care for us, even a quickie consult like 15 min would put your mind at ease, I would insist, going on waiting list, and just turn up at once office with chocolates, dark sunglasses, tcm tea and vegetable juice, sit in a conspicous place. Start meditating with dummies on, keep the chatting to low volume. It works everytime for me. If you are worried, I am worried. Your brain is working pretty well, listen to it.
    Don't expect tcm to fix chemo ills. It may help but I think you will have to chase down this issue yourself, in the period of time you have before your offers an effective solution. You deserve the very best care, don't be robbed off, you are not haggling over a new pair off shoes, our health is all we got, look after it and keep us posted.

    Hugs,
    Pete
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    Options

    Onc busy....
    I called Onc this morning to report side effects and request an appointment. I was told to take NSAIDs for joint pain and he can't see me till April 10th. WHAT???? I didn't even get to tell the nurse ALL the side effects I was having. She just kept trying to get me off the phone like I was bothering her. I told her about the joint pain and blurred vision. She said I see in your records that you have seen a neurologist in the past....yes..so?..... Well maybe you are having a brain issue that is causing the blurred vision you should call that doctor..... Are you friggin serious????? She said you haven't had a treatment in 3 weeks...it CANT be the Vectibix....again, are you friggin serious? Do you not know what the word cumulative means? Are YOU a doctor.NOOOOOO. So, she said she would pass on my half info to Onc....thanks but no thanks. I will be seeking a new Onc. She also said to come in for my treatment Friday. Why the heck would I want more of what is possibly giving me all these problems? Why would they want me to continue treatment before even addressing a possible problem? That makes no sense to me. So NO I am not going for no more treatment until I get some answers and NO I will not wait until April 10th for medical assistance. TIME is not my friend....or anyone's friend with stage IV cancer. Calling my TCM doc next. Guess we will see what he has to offer.

    Jennie

    Hey Jennie, did you go to
    Hey Jennie, did you go to the Vectibex page on the internet that lists side effects....I had a quick look as I wondered about this drug...I'm always interested in what someone else's treatment is, looking for options. Anyhow, it can deplete some things in your system and a depletion of those minerals can cause muscle weakness etc. I'd check those out...maybe you need to replenish those in your system? hypomagnesemia (low magnesium levels in the blood); hypocalcemia (low calcium levels in the blood); and hypokalemia (low potassium levels in the blood); Check out what the symptoms of each of those are, maybe you can find your answer in that and go over it with your naturopath. It also said causes conjuctivitis, so it may be affecting your eyes too.
  • need support
    need support Member Posts: 40
    Options
    same problems
    I've got the same thing primarily in my hands and feet. I saw my oncology doctor and had me get a complete round of blood tests. My feet get so numb I feel like i could drive a nail through them. I ended my last chemo treatment in november, my doctor said it should get slowly better in time . May never go away completely. He didn't seem to concerned said about 50% of his patients have this numbing affect. Thank god for spell check. chuck
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    Options
    Vectibix Only
    I,too, am on Vectibix only... and the feet falling asleep is something that happens to me all the time. Considering I have pretty severe neuropathy from the Oxy 4 years ago, having the feet fall asleep makes it very difficult to stand up. When you don't feel your feet, it's so easy to go over on an ankle... I'm very careful about that :) I put the neuropathy/numbness down to being in the small percentage group where it is caused by the Oxy and I'm one of those lucky people who didn't lose the neuropathy over time. So it doesn't surprise me that I get the feet falling asleep as a side affect from the Vectibix... along with the most incredibly itchy rash all over, and the most sensitive (read: painful) fingertips.

    Vectibix is known to deplete (or severely lower) the magnesium in your body. I get the Vectibix every two weeks. It's a one hour infusion... but I also get 3 hours of hydration and magnesium prior to the Vectibix. I also have to take Magnesium supplements twice/day, along with the IV Magnesium every two weeks.

    Cheryl
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    Options
    smokeyjoe said:

    Hey Jennie, did you go to
    Hey Jennie, did you go to the Vectibex page on the internet that lists side effects....I had a quick look as I wondered about this drug...I'm always interested in what someone else's treatment is, looking for options. Anyhow, it can deplete some things in your system and a depletion of those minerals can cause muscle weakness etc. I'd check those out...maybe you need to replenish those in your system? hypomagnesemia (low magnesium levels in the blood); hypocalcemia (low calcium levels in the blood); and hypokalemia (low potassium levels in the blood); Check out what the symptoms of each of those are, maybe you can find your answer in that and go over it with your naturopath. It also said causes conjuctivitis, so it may be affecting your eyes too.

    Smokey joe
    Thanks! Someone else has sent me a PM about those same levels you mentioned. I am going to get those checked tomorrow. I did take a few Naproxen today and my joints are feeling much better. I am also making an appt with eye doc. Thanks again
    Jennie
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    Options

    i hope you get real good health, real fast
    I don't doAspirin due its liver impact, see my blog.
    But I would get help ASAP, 10th April is what I would expect from busy Onc's, I wished all Onc's would care for us, even a quickie consult like 15 min would put your mind at ease, I would insist, going on waiting list, and just turn up at once office with chocolates, dark sunglasses, tcm tea and vegetable juice, sit in a conspicous place. Start meditating with dummies on, keep the chatting to low volume. It works everytime for me. If you are worried, I am worried. Your brain is working pretty well, listen to it.
    Don't expect tcm to fix chemo ills. It may help but I think you will have to chase down this issue yourself, in the period of time you have before your offers an effective solution. You deserve the very best care, don't be robbed off, you are not haggling over a new pair off shoes, our health is all we got, look after it and keep us posted.

    Hugs,
    Pete

    Hey Pete
    I don't do aspirin either. My onc actually called me back today and we talked on the phone for a while. He apologized for his nurse being a beotch and does not want me giving up on Vectibix. He does not feel these side effects are all Vectibix related and the benefit I am getting from this drug far outweighs the bad...in his opinion. I am mulling it over. It's not like we have a lot of options out there do I can't just dismiss what he is saying. I value my TCM very highly now as I have 2 different TCM docs working together for me..in 2 different states...making me herb pills so I don't have to drink the tea all the time cause it tears up my guts. It's horrible and I hate drinking it so with the help of a dear friend from CSN we have come up with this solution! I am very excited about the herbal pills. Great addition to the arsenal and can be tailored to fit my needs. Thanks Pete for your input

    Jennie
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    Options

    Vectibix Only
    I,too, am on Vectibix only... and the feet falling asleep is something that happens to me all the time. Considering I have pretty severe neuropathy from the Oxy 4 years ago, having the feet fall asleep makes it very difficult to stand up. When you don't feel your feet, it's so easy to go over on an ankle... I'm very careful about that :) I put the neuropathy/numbness down to being in the small percentage group where it is caused by the Oxy and I'm one of those lucky people who didn't lose the neuropathy over time. So it doesn't surprise me that I get the feet falling asleep as a side affect from the Vectibix... along with the most incredibly itchy rash all over, and the most sensitive (read: painful) fingertips.

    Vectibix is known to deplete (or severely lower) the magnesium in your body. I get the Vectibix every two weeks. It's a one hour infusion... but I also get 3 hours of hydration and magnesium prior to the Vectibix. I also have to take Magnesium supplements twice/day, along with the IV Magnesium every two weeks.

    Cheryl

    Hey Cheryl
    Wow...you look fantastic Cheryl! Thanks so much for your post. I knew you had previously been on Vectibix but did not know if you still were. How are your scans? CEA? What are you using on rash? I do not have rash but have SEVERE dry skin...I mean it seriously looks like prune skin. I cannot get enough hydration to my skinny matter what I put on it. It peels all the time and nasty. Any nail infections? So good to hear from you.
    Jennie
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Options
    Goodness!
    Jennie,

    I hope you can get some relief!

    *hugs*
    Gail