One patient with glioblastoma still alive nine years later
by Kathy1963 on Fri Jun 12, 2009 12:00 AM
by nicole37 on Sun Jun 14, 2009 12:00 AM
Wow! Have you been through a lot....I really hope things start healing quickly and you start feeling a heck of a lot better. I don't know a lot about your neck dissection so much. I also had a thyroidectomy (April '08, papillary, tall cell cancer) and now I have a couple of funny looking lymph nodes that the Endo isn't sure about. We don't know if we should just watch them or biopsy them right now. Listening to your story, makes me think I should have them looked farther into. I feel so bad for all that you have been through. I will be praying for your speedy recovery and please keep us all posted. I am sure someone on here will know more than me and be able to give you more info.. I just wanted you to know I was thinking of you...lots of hugs: ) ) ; )
Nicole : )
by skinny on Sun Jun 14, 2009 12:00 AM
Your thyroid situation is lot like mine. TT then 18 months later mod. neck dissection 31 lymph nodes removed, 13 pos. Had RAI and 6 wks of IMRT and ext. beam radiation. This was 2 years ago. It took so long to find a way to sleep. I sat up in a chair, used 5 pillows in bed, & used pain meds at night. I would wake up feeling like someone was choking me. This still happens now, but it has gotten better. I use 3 pillows on an angle and sometime it helps if I lay on my side with my hand around my ear. I'm averaging 5 hours now a night with no meds. It does get better.
One thing I did wrong, I stopped the meds too soon and was too active. The doctor put me back on meds and restricted activties for a few months. He said if I keep overdoing it , my body will not be able to heal.
Take the time now to pamper yourself and get better.
by PopPop on Sun Jun 14, 2009 12:00 AM
I had a Neck Disection done roughly 4 1/2 years ago with about 30 Lymphnodes removed also.
As Skinny mentioned, you may want to sleep with your head and neck raised a bit. Either using several pillows or buying a wedge and then a pillow on top of that.
Your neck is tight for several reasons. One is the healing of the tissue and muscles in that area. The other is the removal of the lymphnodes. The lymphnode system has been disrupted. The flow of the lymphnode system now has to work harder in your neck area and gets backed up, causing some swelling and tightness.
I wasn't told about this until I asked my Radiation Oncologist about it and he sent me to the Cancer Physical Therapist. She taught me several stretching exercises for my neck along with a gentle massage to get the lymphnode system to flow which lasts about 4-6 hours and then have to redo if you feel tightness again. I don't have to do it as often now, but allot depends on your daily activity. The one thing that is in our favor is gravity, during the day as we stand, sit, or walk, the fluids do travel down toward our feet and help naturally.
If we lift heavy objects, the fluids flow up to our shoulders and cause some swelling. Also, if we do allot of bending over and have our head and neck below our heart level, same results.
My Best to You and Everyone Here
by Kathy1963 on Mon Jun 15, 2009 12:00 AM
On 6/14/2009 nicole37 wrote:Kathy, Wow! Have you been through a lot....I really hope things start healing quickly and you start feeling a heck of a lot better. I don't know a lot about your neck dissection so much. I also had a thyroidectomy (April '08, papillary, tall cell cancer) and now I have a couple of funny looking lymph nodes that the Endo isn't sure about. We don't know if we should just watch them or biopsy them right now. Listening to your story, makes me think I should have them looked farther into. I feel so bad for all that you have been through. I will be praying for your speedy recovery and please keep us all posted. I am sure someone on here will know more than me and be able to give you more info.. I just wanted you to know I was thinking of you...lots of hugs: ) ) ; ) Nicole : )
Thanks Nicole for your prayers and hugs. I appreciate everyone who has offered some info. for my situation.
Nicole----Please don't wait and watch. When I had a follow up body scan in February for my yearly follow-up for my thyroidectomy the "Head" of the endocrinology dept. at my hospital told me I was fine and never had to have another scan. Being one year clear meant no more scans. But, my Endo had also order an ultrasound of my neck lymph nodes, so I asked for the results from the top guy. He said I had some indeterminate lymph nodes but that he was sure my blood work would show everything was ok, and my Endo would call with good news. I couldn't wait so I emailed my Endo to inquire about the lymph nodes, and let him know I was not going to wait around. He contacted me and said he didn't want to wait and would schedule a biopsy. And even going into the biopsy he was sure there was no cancer, because the chain of lymph nodes wasn't normally affected first, But, I am not "normal", and I did have cancer. Now, he says it is highly unlikely for a recurrence. Kathy1963
Pop-Pop and Skinny,
I guess what you both are saying is it takes years to get back to normal, if ever. Why don't doctors tell their patients these things? I have tried multiple pillows and different positions. I've moved from the bed to the sofa, and back again. It's a good thing my hubby is such a sound sleeper. I know things will get better. It just seems like such a long time. And, things aren't always so easy for me. Seems I always run into some sort of set back. Right now it is a temperature that no one seems to be able to figure out . I appreciate everyones input. It helps hearing from someone who can tell me what to expect. Kathy1963
by skinny on Mon Jun 15, 2009 12:00 AM
A few months after my mod. neck diss. I went to a Physical Therapist to help with the neck stiffness and problems with my shoulder. Some of the nerves were damaged. The PT helped a lot. I could only do it for two months. (expensive) My PT never treated a thyroid patient before. Only breast cancer patients. She was wonderful. It took about 2 weeks before I felt a difference, but sleeping became a little easier after the PT.
The temp. is a concern. I did have something similar and would have body pains along with it. It seemed to start in my feet and legs and work it's way up my body. Push for an answer on this. Don't give up. When one of my kids gets sick, I seem to quickly get a sore throat that lingers.
Just to let you know, I am sleeping better. I have 3 kids who are constantly on the go. I use to fall asleep at red lights. Now things are much better. I even went out dancing with the girls a few weeks back.
When I was told the cancer came back worse than the first time, I just wanted to run away. But, I fought hard and am lucky to be able to tell my little ones everyday that I love them. Keep fighting and take the time to get better. Your body will mend itself if you let it.
I'll pray for you. Skinny
by Kathy1963 on Fri Jun 19, 2009 12:00 AM
I know what you mean about running away. I have seriously been giving it some thought lately. I saw my surgeon yesterday. I have some mild cellulitis, but have already taken two antibiotics, so he didn't want to give me another. One thing I didn't mention----I am allergic to a whole lot of antibiotics. He sent me for an ultrasound of my surgical site, no word yet. The technician did tell me that I had some very inflamed and angry lymph nodes surrounding my surgical site. I have tried to find some answers on the web, but so far I can't find out if that is normal. I wonder if that may be the reason for the temperature. I also worry about more cancer. The technician decided to do the ultrasound on the non-surgical site as well (not per my doc). So, that worried me as well. Kathy1963
by skinny on Sat Jun 20, 2009 12:00 AM
Don't make yourself crazy by looking at every thyroid site out there. If this dr isn't listening to you about the fever, find someone who will.
I had weird fever spells for a year after my mod. neck dis. and no one could explain it to me. I thought I was having hot flashes. I just knew my body wasn't working right. Eventually, it went away. I have to say it does happen now and again.
Keep your spirits up, talk with friends, and write back. Getting down doesn't help at all. I know my husband and 3 kids are glad I fought as hard as I did. 2 rounds of I-131 and IMRT and EBR was much more than I thought I could handle. I got down to 94 pounds. Today, thing are much better. I have a spot they are watching but my Tg was still under 2.
by Kathy1963 on Tue Jun 23, 2009 12:00 AM
Thanks for your support. I remember after my brain surgery I had a period of about two weeks with the same fever thing going on. I do have the hot flashes too. I can not wait for them to pass. I wish my Endo. would do my blood work so we can check my levels just in case my levoxyl needs adjusted. But, he wants to wait until mid July. No word on my ultrasound yet. I will call tomorrow.
Don't worry, if I run away I will only go to Alabama to be near my son and his fiance'. Kathy1963
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