Red dots appearing under skin, what next

rcdeman

janaes said:

I am so sorry your medial

I am so sorry your medial team isnt working with you.  Ive had some problems with my medical oncogist too.  Fortunatly he worked with me on neropathy.  Mine was getting worse and worse after each treatment and just before my 4th chemo my doctor suggested that i change meds to toxatere (sp).  I think i still got some neropathy after the change for the next 3 treatments but i do still think it turned out better than not changing.  My problem was i started getting a back ache during chemo treatments and told him at each visit and he did nothing.  He just listened and didnt say a word.  It wasnt until i went to my GP that i finally got someone to give me a MRI.    Oh by the way you are not crazy.  This group helped me so much to help me not feel crazy.  This stuff is just hard and the people who have gone through it just get it!!   I hope you get in to have your insultation with your doctor.

 

Hugs Janae

Hi Janae, just a question. My

Hi Janae, just a question. My mom is experiencing the back aches like you did, and I was wondering what was the result of your MRI? I understand our doctors sometimes want to limit the scans due to radiation exposure, but at the same time it can be unsettling having all these aches and pains and not knowing if chemo is effectively working or not.

Thanks!
Rebecca

rcdeman

Scotgirl said:

Thank you everyone, so kind to take the time with your responses

i am blown away by everyone on this discussion board. You all make me feel like I am not crazy for thinking there must be some modification to my course of treatment that can be implemented. Unfortunately, when my chemo oncologist office called me back today regarding the new sympthoms from chemo 2, I just got more of the same talk. someone subbing for my doctor's head chemo nurse proceeded to tell me my neuropathy might not be as bad as I think it is even after I suggested using the number scale, 10 being I need a walker or a cane to be mobile. I put the peripheral neuropathy at a 5/6 and this is only #2 treatment of 6. I know that it will be cumulative and is not reversible. I felt as if he wasn't listening to me and treating me as an individual. Isn't my perception my reality. I had also requested a new consult with my oncologist before #3 treatment on Nov 29, so we can discuss possible changes. The conversation was very upsetting, my husband had to take the phone and again requested a consult with my doctor and before hanging up he said to my husband "we are working on it" and hung up. This is not what I was expecting from Memorial Sloan Kettering, Basking Ridge, NJ satellite treatment center after surgery in Manhattan, NYC, loved my surgeon, expectations were so high but they have plummeted. Waiting to hear from my doctor for the appointment I requested. Thanks again ladies, your experiences and support are invaluable in helping me get to the other side!

Sorry to hear you are having

Sorry to hear you are having issues with your medical team. We are experiencing similar issues. Right now my mom is a little bit behind you in the chemo schedule. Her second chemo session will be next Monday. Although she's only had one chemo session so far, she's already feeling quite bad overall. I'm so worried about her upcoming future treatments due to chemo being cumulative. I'm just afraid it will get worse for her. Add in the sandwich radiation which completely depletes your system, I'm praying that she makes through all of this intact and well.

janaes

rcdeman said:

Hi Janae, just a question. My

Hi Janae, just a question. My mom is experiencing the back aches like you did, and I was wondering what was the result of your MRI? I understand our doctors sometimes want to limit the scans due to radiation exposure, but at the same time it can be unsettling having all these aches and pains and not knowing if chemo is effectively working or not.

Thanks!
Rebecca

Hey rebecca,  I researched it

Hey rebecca,  I researched it and found out that MRIs do not use radiation.  Its the cat scans that do.  I still dont know exatly where i got the problem from but they found one of the vertabres wedged.  They found it wasnt as bad as i or they originally thought, so my doctor didnt recomend sergery and told me i could have possible physical therapy.  I didnt do it yet.  I did find out i had ostioprosis (Dont know how long that has been that way).  So im sure that was part of the reason my vertebre was wedged.  I layed down in my bed alot during chemo and that might have mad it that way.  I am glad i did my MRI because  it gave me answers.   It was worth doing for me.  My back still hurts but with exersize it has helped. I am back to work now and lifting things more and more.  Knowing that it wasnt serious helped me calm down and progress.

Janae

URmySunshine43

My experience with Neuropathy

I am new to this discussion board, and I have read this thread with lots of interest. The cumulative effects of exhaustion and neuropathy were my main side effects -other than losing my hair which I found freeing!  The neuropathy was in my hands and feet. Once I had completed my treatments, the feeling returned to my hands 100%, and about 90% to my feet. The nerves did regenerate. So, don't think you won't get your feeling back. It can.

rcdeman

janaes said:

Hey rebecca,  I researched it

Hey rebecca,  I researched it and found out that MRIs do not use radiation.  Its the cat scans that do.  I still dont know exatly where i got the problem from but they found one of the vertabres wedged.  They found it wasnt as bad as i or they originally thought, so my doctor didnt recomend sergery and told me i could have possible physical therapy.  I didnt do it yet.  I did find out i had ostioprosis (Dont know how long that has been that way).  So im sure that was part of the reason my vertebre was wedged.  I layed down in my bed alot during chemo and that might have mad it that way.  I am glad i did my MRI because  it gave me answers.   It was worth doing for me.  My back still hurts but with exersize it has helped. I am back to work now and lifting things more and more.  Knowing that it wasnt serious helped me calm down and progress.

Janae

Hi Janae,

Hi Janae,

I'm so glad to hear this. If the aches and pains continue, I will see if we can go back to her PCP and somehow get an MRI as well. It would be a relief to know what is causing what and not just attribute all the various aches and pains as "cancer progression."

I do second the suggestiong that yout start getting physical therapy (at least) for your wedged vertabrae and see if that will help now that you're back at work. Glad to know things are commencing for you. There are also some exercises you can find online specifically for the areas of your body that need to be worked on.

Best,
Rebecca

rcdeman

URmySunshine43 said:

My experience with Neuropathy

I am new to this discussion board, and I have read this thread with lots of interest. The cumulative effects of exhaustion and neuropathy were my main side effects -other than losing my hair which I found freeing!  The neuropathy was in my hands and feet. Once I had completed my treatments, the feeling returned to my hands 100%, and about 90% to my feet. The nerves did regenerate. So, don't think you won't get your feeling back. It can.

URmySunshine, thanks for

URmySunshine, thanks for letting us know! I know some people still suffer from the neuropathy and lymphadema even well after treatment. I don't think lymphadema is curable, but I'm hopeful neuropathy will eventually heal. I'm glad you got most of your feeling back (aside from the 10% in your feet which doesn't seem TOO bad).

Hope you are doing well! How long ago did you complete your treatments and what was your staging/grade?

Best,
Rebecca

janaes

rcdeman said:

Hi Janae,

Hi Janae,

I'm so glad to hear this. If the aches and pains continue, I will see if we can go back to her PCP and somehow get an MRI as well. It would be a relief to know what is causing what and not just attribute all the various aches and pains as "cancer progression."

I do second the suggestiong that yout start getting physical therapy (at least) for your wedged vertabrae and see if that will help now that you're back at work. Glad to know things are commencing for you. There are also some exercises you can find online specifically for the areas of your body that need to be worked on.

Best,
Rebecca

Yea, the exersizes i have

Yea, the exersizes i have been doing are back exersizes.  I bought me a foam rollar and am using that and have learned of qite a few other exersizes that I have been doing as well just for my back.  Doing my walking has probably been helping as well.  So glad the weather was good so i could. Since i do walking at work i have been using that as my walking now.  Perfect timing because that is when it started getting cold.  I see my GP next week for my follow up.  Now that I feel more confident work is going to work out i might beable to fit physical therapy in after work and before my kids get home from school.  I guess i will see.  eventually i am going to want to work full time and would like my back feeling even better.  Oh it helped me to have a back supporter for when i sit.  Its just a foam support to put behind me to have better posture.  I really like that.  especially in the car,