Thank you so much for all of the positive feedback and encouragement. I am 40 years old, I was diagnosed with bone cancer 18 years ago, and I had to take high doses of a heavy metal to cure as part of my chemo. Has anyone else experienced similar effects? Also, just had my first dose. It was three days in a row, and I'm fighting constant fatigue. Does it get better? Any suggestions welcome.
I don't know. I just had to write to you.Keep thinking positive thoughts. You really have been though the mill haven't you? After reading you story I dont think I'm that bad off. I have C.I.D.P but I would hate to have cancer. I hope they can cure you and then be free of pain. My thought are with you. cheers shirl
I think you are talking about the similarity between bone cancer and CIDP fatigue. Yes, fatigue should get better if the treatment is working but fatigue is a constant struggle. I assume you are on IVIG. Hang in there it may take a few rounds.
I am confused, are you currently on IVIG? I know that I get tired on the days of my treatment and sometimes for a day after. I try to prepare for it by making food ahead of time and making the house comfortable so I can rest. It is hard feeling like you don't have control over what your body can do, I know the sooner I am at peace with it the better off I will be. Try to find one thing that can make you smile and make that a part of your day. Peace
I have a similar situation as I had breast cancer 13 years ago at the age of 39, and went through several types of heavy chemo. I was diagnosed with CIDP about a year ago, but they think it has been going on for about 10 years. They think the chemo comprimised my immune system which caused the CIDP. I started the IViG last Nov. and it seems to be making a big difference. I do the treatments every 3 weeks and yes, there is fatigue involved. I teach school so I am on my feet all day which doesn't help matters. It has taken me almost a year to figure out what works best for me with the IViG treatments. The nurses kept trying to speed up the treatments which was making me sick. I finally figured out what my tolerance is for the infusion rate and I really have to stay on the nurses to make sure they don't give it to me too fast. The infusion rate seems to make a very big difference with the side effects so just pay attention to your body and what works best for you. You really have to be proactive in taking care of yourself and making sure the infusions are given in your best interests and not the nurses. If you look back on earlier posts, someone posted about a magazine call IG Living, which is free for people receiving these treatments. I have gotten so much out of their articles. I hope this helps.
Hi Tammy! I had breast cancer 17yrs ago @ 43yrs old, no chemo but radical mastectomy with 8 follow surgeries. I was experiencing numbness in my feet they dx'd B12 deficiency and started me on B12 injections. I was dx'd with CIDP Dec last year. They increased my flow rate per my request this week and it worked well for me. My legs would get sore at the end of the treatment (3hoursX 2 days every other week) and taking off about 40 mins of the treatment seemed to help. They monitored my blood pressure,heart rate, temp every 20 mins to make sure I could handle it. I was tired and a little nauseous but that is the norm for me.It seems the symptoms of CIDP are similiar in most of us but the treatments are unique. I don't know how you can work all day I think my extremities would implode. Stay well my sister cancer survivor.
Tammy said:
I have a similar situation as I had breast cancer 13 years ago at the age of 39, and went through several types of heavy chemo. I was diagnosed with CIDP about a year ago, but they think it has been going on for about 10 years. They think the chemo comprimised my immune system which caused the CIDP. I started the IViG last Nov. and it seems to be making a big difference. I do the treatments every 3 weeks and yes, there is fatigue involved. I teach school so I am on my feet all day which doesn't help matters. It has taken me almost a year to figure out what works best for me with the IViG treatments. The nurses kept trying to speed up the treatments which was making me sick. I finally figured out what my tolerance is for the infusion rate and I really have to stay on the nurses to make sure they don't give it to me too fast. The infusion rate seems to make a very big difference with the side effects so just pay attention to your body and what works best for you. You really have to be proactive in taking care of yourself and making sure the infusions are given in your best interests and not the nurses. If you look back on earlier posts, someone posted about a magazine call IG Living, which is free for people receiving these treatments. I have gotten so much out of their articles. I hope this helps.
Hi Nancy...and my sister in breast cancer. They were trying to speed up my infusion rate to 2 hrs. and it was making me sick for days after each treatment. I've figured out that 3 hrs. is my limit and it has made a huge difference in how I feel after treatments. Working all day is hard, especially because I am on my feet all day. I don't realize it until the end of the day when I finally get off of my feet. Keeping busy helps keep your mind off of what is hurting sometimes.
nancy said:
Hi Tammy! I had breast cancer 17yrs ago @ 43yrs old, no chemo but radical mastectomy with 8 follow surgeries. I was experiencing numbness in my feet they dx'd B12 deficiency and started me on B12 injections. I was dx'd with CIDP Dec last year. They increased my flow rate per my request this week and it worked well for me. My legs would get sore at the end of the treatment (3hoursX 2 days every other week) and taking off about 40 mins of the treatment seemed to help. They monitored my blood pressure,heart rate, temp every 20 mins to make sure I could handle it. I was tired and a little nauseous but that is the norm for me.It seems the symptoms of CIDP are similiar in most of us but the treatments are unique. I don't know how you can work all day I think my extremities would implode. Stay well my sister cancer survivor.
Tammy said:I have a similar situation as I had breast cancer 13 years ago at the age of 39, and went through several types of heavy chemo. I was diagnosed with CIDP about a year ago, but they think it has been going on for about 10 years. They think the chemo comprimised my immune system which caused the CIDP. I started the IViG last Nov. and it seems to be making a big difference. I do the treatments every 3 weeks and yes, there is fatigue involved. I teach school so I am on my feet all day which doesn't help matters. It has taken me almost a year to figure out what works best for me with the IViG treatments. The nurses kept trying to speed up the treatments which was making me sick. I finally figured out what my tolerance is for the infusion rate and I really have to stay on the nurses to make sure they don't give it to me too fast. The infusion rate seems to make a very big difference with the side effects so just pay attention to your body and what works best for you. You really have to be proactive in taking care of yourself and making sure the infusions are given in your best interests and not the nurses. If you look back on earlier posts, someone posted about a magazine call IG Living, which is free for people receiving these treatments. I have gotten so much out of their articles. I hope this helps.