feeling like I am walking on rocks

76joann51034
76joann51034 Member Posts: 5
in Prostate Cancer #1
I was diagnosed with prostate cancer in June 2011, was first given the Lupron shot to reduce the psa and then took 40 radiation treatments. After finishing on December 30 I noticed when walking that it felt like I had something in my shoes. I would stop and look and found nothing It progressively got worse and very uncomfortable. I called the cancer center and the nurse said it would not be related to the treatments. I visited a general practioner and he did blood work to check for diabetes and everything was normal. I was put on Gabapentin and have taken it over a month and still have the sensation of walking on rocks and it seems to be getting worse. I am writing this to see if anyone else has the symptoms and what you may know about it. Thanks

Comments

  • ncobjim
    ncobjim Member Posts: 37
    #2
    Foot Problems
    Just a thought. After RP in 2006 and DVT in both legs i had much pain in both feet when walking. Was like walking on pins and needles. It took 2 years but i was finally sent to a neurologist and diagnosed with Peripheral Neuropathy (nerve damage) in both feet. Have used pain meds since. Again, just a thought.
  • Celticroots2
    Celticroots2 Member Posts: 43
    #3
    feeling like I am walking on rocks
    Hi,

    My husband was also on Gabapentin for what is called peripheral neuropathy. Having had radiation treatment to his spine and sacrum it can cause damage to the nerves. This is probably what you are feeling. Unfortunately there is not a decent treatment for this as he has been given everything that's available. In most cases the damage is irreparable but some patients over time can experience the healing of the nerve endings, but this takes a very long time. In some cases up to 18 months. Nerves are one part of the body that take a very long time to repair if at all.
    I know this is probably not helpful or what you wanted to hear but perhaps look at changing parts of your diet which may help.
  • rch
    rch Member Posts: 79
    #4
    Celticroots2 said:

    feeling like I am walking on rocks
    Hi,

    My husband was also on Gabapentin for what is called peripheral neuropathy. Having had radiation treatment to his spine and sacrum it can cause damage to the nerves. This is probably what you are feeling. Unfortunately there is not a decent treatment for this as he has been given everything that's available. In most cases the damage is irreparable but some patients over time can experience the healing of the nerve endings, but this takes a very long time. In some cases up to 18 months. Nerves are one part of the body that take a very long time to repair if at all.
    I know this is probably not helpful or what you wanted to hear but perhaps look at changing parts of your diet which may help.

    76Joann
    You did n't give
    76Joann
    You did n't give much information on your prostate cancer except you were started on Lupron and had rad tx. How's the strength in the lower extremities? Symptoms are most likely treatment related . Nonetheles, I strongly advise you to discuss your symptoms with your PCP to evaluate your LS spine. Peripheral neuropathy is a dx of exclusion. If symptoms are worsening as you stated please do not ignore it.
  • rch
    rch Member Posts: 79
    #5
    Celticroots2 said:

    feeling like I am walking on rocks
    Hi,

    My husband was also on Gabapentin for what is called peripheral neuropathy. Having had radiation treatment to his spine and sacrum it can cause damage to the nerves. This is probably what you are feeling. Unfortunately there is not a decent treatment for this as he has been given everything that's available. In most cases the damage is irreparable but some patients over time can experience the healing of the nerve endings, but this takes a very long time. In some cases up to 18 months. Nerves are one part of the body that take a very long time to repair if at all.
    I know this is probably not helpful or what you wanted to hear but perhaps look at changing parts of your diet which may help.

    Duplicate
    Duplicate
  • 76joann51034
    76joann51034 Member Posts: 5
    #6
    rch said:

    76Joann
    You did n't give
    76Joann
    You did n't give much information on your prostate cancer except you were started on Lupron and had rad tx. How's the strength in the lower extremities? Symptoms are most likely treatment related . Nonetheles, I strongly advise you to discuss your symptoms with your PCP to evaluate your LS spine. Peripheral neuropathy is a dx of exclusion. If symptoms are worsening as you stated please do not ignore it.

    i Had an elevated PSA in
    i Had an elevated PSA in March, it increased to 14.0 and was started on Lupron to bring PSA down before the radiation treatments. I am 77 and in good physical shape, working everyday. Had the 40 treatments and feel fine except for these rocks in my shoes and legs cold and weak. Will get an MRI tomorrow and results on Friday from the cancer treatment center. The cancer clinic claims they have never had this to happen and do not think it is cancer related. Hoping for physical therapy or chiropractor per the radiologist last week. Thanks for the reply.
  • 76joann51034
    76joann51034 Member Posts: 5
    #7
    Celticroots2 said:

    feeling like I am walking on rocks
    Hi,

    My husband was also on Gabapentin for what is called peripheral neuropathy. Having had radiation treatment to his spine and sacrum it can cause damage to the nerves. This is probably what you are feeling. Unfortunately there is not a decent treatment for this as he has been given everything that's available. In most cases the damage is irreparable but some patients over time can experience the healing of the nerve endings, but this takes a very long time. In some cases up to 18 months. Nerves are one part of the body that take a very long time to repair if at all.
    I know this is probably not helpful or what you wanted to hear but perhaps look at changing parts of your diet which may help.

    Thanks for the reply. The
    Thanks for the reply. The gabapentin is definitely not helping after five weeks. I haven't told that doctor that the cancer clinic is doing a MRI but will call him tomorrow to let him know. The cancer clinic didn't seem familiar with gabapentin but then they only treat cancer. This is the pitts! I feel fine except for the legs being weak and cold and the rocks in my shoes, makes it hard to walk and my job requires a lot of walking. Thanks again
  • rch
    rch Member Posts: 79
    #8
    76joann51034 said:

    Thanks for the reply. The
    Thanks for the reply. The gabapentin is definitely not helping after five weeks. I haven't told that doctor that the cancer clinic is doing a MRI but will call him tomorrow to let him know. The cancer clinic didn't seem familiar with gabapentin but then they only treat cancer. This is the pitts! I feel fine except for the legs being weak and cold and the rocks in my shoes, makes it hard to walk and my job requires a lot of walking. Thanks again

    I'm very surprised the
    I'm very surprised the Cancer treatment center has not heard the name-Gabapentin. Gabapentin (Neurontin-Brand name) is one of the meds used for neuropathy. It's also used for a whole host of other neurological conditions, both labelled and off-labelled indications.I'm not sure what dose you are on. At your age of 77, it's normally started at the lowest dose initiated at bed time and then slowly titrated upwards to 2 times daily and then 3 times daily. Your doctor may increase the dose if you do not have a good response within 5-6 wks.One of the side effects is dizziness and/or sedation. If you experience any side effects, please call your doctor.
  • mrspjd
    mrspjd Member Posts: 694 Member
    #9
    76joann51034 said:

    Thanks for the reply. The
    Thanks for the reply. The gabapentin is definitely not helping after five weeks. I haven't told that doctor that the cancer clinic is doing a MRI but will call him tomorrow to let him know. The cancer clinic didn't seem familiar with gabapentin but then they only treat cancer. This is the pitts! I feel fine except for the legs being weak and cold and the rocks in my shoes, makes it hard to walk and my job requires a lot of walking. Thanks again

    painful symptoms
    Jo,

    Welcome to the PCa discussion board. Sorry to read of your discomfort and painful symptoms. From your brief description of the tx you received for PCa, it appears your dx (diagnosis) was one of intermediate to high risk. However, without more details about your PCa history, it’s difficult to provide lay-opinions as to whether your current issues are PCa related and/or PCa tx related or neither.

    Often, in higher risk PCa cases, diagnostic tests are used to evaluate the extent of the cancer prior to tx in order to determine if there is disease outside of the prostate, such as local or distant metastasis/tumors to the bone/spine or soft tissue. While not always 100% accurate, in some advanced cases the tests can help specialists plan a course of tx to best meet your PCa staging risk. Prior to the Lupron & RT txs, were you given any diagnostic tests, and if so, what were the tests and the results. Perhaps you might share more about your Lupron (hormone) tx protocol, such as # of injections, other HT drugs, HT continuing or discontinued? If you have (or can obtain) copies of your medical reports with more info about your initial dx and more details about your tx, perhaps you might also consider sharing it. That info could include PSA history, factors leading to biopsy (at age 77), biopsy results including Gleason score (G) and the # & % of involved cores/cancer volume, prostate volume, and any 2nd opinion pathology results/reports obtained from a lab specializing in analyzing PCa biopsy specimen slides.

    While every aspect of PCa is different for every patient, the symptoms you describe are rare as a result of RT tx, especially today, when modern, up to date, RT delivery technology is used in a medical center of excellence to tx PCa & the RT tx plan is designed to fit your PCa risk level/staging.

    My lay opinion is that one of the reasons the MRI has been scheduled may be to rule out any distant metastasis/tumor that might be causing pressure/compression on lower extremity nerves resulting in some of the symptoms you describe. It’s always wise to share all your PCa history/tx/tests/results, etc. with all doctors who are treating you. Rather than a radiation oncologist or urologist or PCP, IMHO, the doctor who can best manage your case/care now, including any possible side effects as a result of tx or advanced disease, is an oncologist specializing in PCa. If you already have a PCa oncologist on your medical team, I strongly recommend that you consider obtaining an independent 2nd opinion consult from another PCa oncologist at a different medical center/instituion.

    All the best & good luck to you.

    M (mrs pjd)
  • 76joann51034
    76joann51034 Member Posts: 5
    #10
    mrspjd said:

    painful symptoms
    Jo,

    Welcome to the PCa discussion board. Sorry to read of your discomfort and painful symptoms. From your brief description of the tx you received for PCa, it appears your dx (diagnosis) was one of intermediate to high risk. However, without more details about your PCa history, it’s difficult to provide lay-opinions as to whether your current issues are PCa related and/or PCa tx related or neither.

    Often, in higher risk PCa cases, diagnostic tests are used to evaluate the extent of the cancer prior to tx in order to determine if there is disease outside of the prostate, such as local or distant metastasis/tumors to the bone/spine or soft tissue. While not always 100% accurate, in some advanced cases the tests can help specialists plan a course of tx to best meet your PCa staging risk. Prior to the Lupron & RT txs, were you given any diagnostic tests, and if so, what were the tests and the results. Perhaps you might share more about your Lupron (hormone) tx protocol, such as # of injections, other HT drugs, HT continuing or discontinued? If you have (or can obtain) copies of your medical reports with more info about your initial dx and more details about your tx, perhaps you might also consider sharing it. That info could include PSA history, factors leading to biopsy (at age 77), biopsy results including Gleason score (G) and the # & % of involved cores/cancer volume, prostate volume, and any 2nd opinion pathology results/reports obtained from a lab specializing in analyzing PCa biopsy specimen slides.

    While every aspect of PCa is different for every patient, the symptoms you describe are rare as a result of RT tx, especially today, when modern, up to date, RT delivery technology is used in a medical center of excellence to tx PCa & the RT tx plan is designed to fit your PCa risk level/staging.

    My lay opinion is that one of the reasons the MRI has been scheduled may be to rule out any distant metastasis/tumor that might be causing pressure/compression on lower extremity nerves resulting in some of the symptoms you describe. It’s always wise to share all your PCa history/tx/tests/results, etc. with all doctors who are treating you. Rather than a radiation oncologist or urologist or PCP, IMHO, the doctor who can best manage your case/care now, including any possible side effects as a result of tx or advanced disease, is an oncologist specializing in PCa. If you already have a PCa oncologist on your medical team, I strongly recommend that you consider obtaining an independent 2nd opinion consult from another PCa oncologist at a different medical center/instituion.

    All the best & good luck to you.

    M (mrs pjd)

    MRI Results
    We went Friday for the MRI results and the oncologist came in and told us the good news is that it is not bone cancer and the bad news is "You broke your spine". I had never heard that term and the doctor was very concerned. He schedules us to see a spine doctor tomorrow. Hoping for non invasive surgery but really don't know what to expect. Thanks for the help guys and good luck to all of you.
  • mrspjd
    mrspjd Member Posts: 694 Member
    #11
    76joann51034 said:

    MRI Results
    We went Friday for the MRI results and the oncologist came in and told us the good news is that it is not bone cancer and the bad news is "You broke your spine". I had never heard that term and the doctor was very concerned. He schedules us to see a spine doctor tomorrow. Hoping for non invasive surgery but really don't know what to expect. Thanks for the help guys and good luck to all of you.

    Jo,

    Glad that PCa tumors/mets were ruled out on the MRI. However, with all due respect, Jo, I still think it wouldn’t hurt to consider seeking a 2nd opinion consult from another oncologist, especially one with a specialty in PCa. Here’s why: “Broke your spine” isn’t exactly a medical dx. Did the doctor discuss how this might have occurred? IMHO, if your back/spine was broken, I seriously doubt you’d be able to walk at all. However, if you have a spinal/bone fracture that is impinging on sensitive lower extremity nerves, then it’s anyone’s guess what might have caused it. In fact, a “fracture” may even be directly or indirectly related to PCa and the use ADT drugs. Without proper monitoring by a PCa oncologist of any prolonged use of HT/ADT drugs, the drugs can have serious side effects with regard to bone mineral degradation, fractures, etc. Has your current onc checked your vitamin D levels? Prior to the start of an ADT protocol, a KNOWLEDGEABLE PCa onc will most often order a QCT (although some may order a DEXA scan—the QCT has better resolution for the spine, according to some PCa oncs). The QCT will establish a baseline of bone mineral density and look for osteopenia or worse, osteoporosis—the possible culprit for certain bone fractures/breaks. If either condition is dx’d then certain drugs can be implemented to address the issue.

    As with PCa, before seeking tx, it’s always wise to understand the dx fully so that the tx you obtain will be appropriate to mitigate current and any future related medical symptoms/issues, especially with regard to bone fractures/breaks. Again, good luck.
  • rch
    rch Member Posts: 79
    #12
    mrspjd said:

    Jo,

    Glad that PCa tumors/mets were ruled out on the MRI. However, with all due respect, Jo, I still think it wouldn’t hurt to consider seeking a 2nd opinion consult from another oncologist, especially one with a specialty in PCa. Here’s why: “Broke your spine” isn’t exactly a medical dx. Did the doctor discuss how this might have occurred? IMHO, if your back/spine was broken, I seriously doubt you’d be able to walk at all. However, if you have a spinal/bone fracture that is impinging on sensitive lower extremity nerves, then it’s anyone’s guess what might have caused it. In fact, a “fracture” may even be directly or indirectly related to PCa and the use ADT drugs. Without proper monitoring by a PCa oncologist of any prolonged use of HT/ADT drugs, the drugs can have serious side effects with regard to bone mineral degradation, fractures, etc. Has your current onc checked your vitamin D levels? Prior to the start of an ADT protocol, a KNOWLEDGEABLE PCa onc will most often order a QCT (although some may order a DEXA scan—the QCT has better resolution for the spine, according to some PCa oncs). The QCT will establish a baseline of bone mineral density and look for osteopenia or worse, osteoporosis—the possible culprit for certain bone fractures/breaks. If either condition is dx’d then certain drugs can be implemented to address the issue.

    As with PCa, before seeking tx, it’s always wise to understand the dx fully so that the tx you obtain will be appropriate to mitigate current and any future related medical symptoms/issues, especially with regard to bone fractures/breaks. Again, good luck.

    Joann
    You got some very good
    Joann
    You got some very good advice from the other members on this board.
    If the term 'pathologic fracture' or 'nerve root impingement' etc were not used, you probably have an osteoporotic compression fracture. If you do not have any severe back pain, I doubt the Spine Surgeon would do any invasive procedures. Did the Radiologist comment on'acute,subacute or chronic ' on the fracture ? In any case,I'm glad you're being referred to the Spine Surgeon who can rule out your symptoms being related to the fracture. Your PCP can then order an osteoporotic w/u including a bone density scan and start you on some bisphosphonates and Vit D. I suggest you ask him to include B12,Folate and methyl malonate with your blood work up. This is just an opinion.

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