#91090 03-04-2009 02:21 AM | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | For sometime now I've been experiencing extreme fatigue/exhaustion. I finished my chemo and radiation treatments almost 1 year ago and my surgery was in June of 08. I lost a total of 70lbs during treatment, mostly muscle and mostly from my legs and butt. The surgery removed a lot of tissue from my cheek and jaw as well as replacing my jaw with my tibia.
The issues I'm having seem to be related to physical activity, after a good day of feeling good and being active, physical therapy, workouts, etc...I go down for several days before I feel that I have enough energy to even get out of bed. I have a severe intollerance to cold as well.
I had my thyroid tested and the results came back normal, I decided to go to a General Practitioning doctor instead of my ENT to get another opinion and maybe an entire body prognosis as opposed to just having to do with my cancer. The doctor seems to believe it is depression, which I totally disagree with. I have had my depressed moments during this ordeal, who hasn't right, but I've been through depression before and this feeling of fatigue and exhaustion is not it. It's crushing really, I've tried getting up, taking hot showers, caffiene, walking around and all for naught. The doctor did order more blood work at least, so maybe I get answers there, but I'm wondering if anyone else has any ideas or has experienced extreme exhaustion not related to a thyroid condition? Any ideas would be appreciated
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Jan 2008 Posts: 26 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jan 2008 Posts: 26 | I was still exhausted 6 months post-RT and my thyroid tested fine like yours did. Had started depression med during RT, Dr thought maybe I needed a higher dose, so increased dose - didn't help. Dr then did bloodwork and found my vit D level was extremely low so I've been on 50000 IU weekly since. It has made all the difference for me. I did 13 weekly doses, then switched to monthly dose, but energy dropped off so dr switched me back to weekly dose. Dr recently weaned me off the depression med - and all is good.
Hopefully the bloodwork will provide some answers for you.
08/24/07 Dx at age 44 never smoker, occasional drink T1N0M0 G2 09/06/07 partial glossectomy(rt),neck disection (rt) 32 nodes clear 12/05/07 35 RTx w/boost, 63 GY, finished 12/28/09 PET/CT all clear!! 12/19/11 check-up, all clear - 4 years cancer-free now !!
| | | | Joined: Aug 2008 Posts: 48 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Aug 2008 Posts: 48 | Im was so exhausted that I could'nt stand without falling, most of the time and when I tried to walk I would fall into the the walls, I fell 3 times in the shower. I called the cancer center and they told me to use a walker. after 2 weeks I went to my gp who did blood work amd to the hospital I went for 3 days, He said my blood was low gave me 2 units and potassium, not sure what else, but I went home walking tho Im very unstable and can only walk so far and im weak. 5 days ago when I went for 3 months out of rt and ct they gave me iv magnesium, I don't know a lot about the meds. But I feel so much stronger after magnesium, can walk, even did a little house work today. I wish they would check it more offen, they use to give it to me weekly during treatment and it help, I asked when I was down if they would take blood work and they told me they only would do labs before appointments, every 3 months.
cancer surgery on July 7th. 2008, I'm now a survivor. cancer free for now. 39 radiation, and 8 chemo treatments.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Eric, I like you finished treatments a good while ago. I lost 70 lbs the same as you and believe me, there are many more than us that get exhausted easily. The tired the body the dryer the mouth and throat. I went from 147 back up to 184 and after this anneurysm surgery, my weight has dropped down to 160 again. dr will be chewing butt, but i try to eat decent and drink ensure and shakes as well. All we can do is our best.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | My weight before OC was always 220.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Eric
I understand what you are explaining. Fatigue is something I have almost daily. I also dont sleep very well most nights. My throid was ok just like yours. But, my bloodwoork numbers everything was just a little low. That in itself was enough for me to feel crappy. A couple other things that have an effect on how you feel is if you have lost alot of weight and yoru blood pressure. Mine is usually pretty low now, averages about 94/64.
My doc explain that it takes your body a long long time to recover from first having cancer then the treatments. The after effects can last for several years. Are you taking any vitamins? I take a multi vitamin with iron which has helped me alittle.
Hope you feel better soon. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Thank you all so much for the responses. Yes I do take a multi vitamin, I had been on an iron supplement as well when I was going through treatment but not now. I'm still waiting on my bloodwork to comeback, they are testing for things other then my thyroid I guess....maybe everything is a little off like you said Christine.
I don't sleep very well at all either, most nights I get just a couple of hours of non restful sleep a night. It's driving me nuts to be honest.
Thanks everyone for their responses
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Hope you get some answers when the blood woork results get back. There are several of us on here who dont sleep well. Dont know if its something related to cancer or not. I havent slept properly for about 2 years now.
Please continue to post your questions, comments. Best of luck to you. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Eric I think maybe Christine has the answer. I don't sllep more than an hour at a time and I agree, it gets frustrating. It's hard to find anything even on TV to watch unless it's infomercials. I think maybe the pains we have but are used to, bother us more at night but we don't notice them much. Good luck in the future.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Oct 2007 Posts: 83 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Oct 2007 Posts: 83 | I'm 15 months out of treatment and 5 mos from my surgery and am taking a .75 boost for my thyroid, BUT still run out of gas very easy and quickly. I'm in to see my MONC and a PET scan and I'm going to get him to check me a little deeper. I hate falling asleep at my bench, or in the car or on my motorcycle or the bathroom....etc.
Stage 4b BOT and node on right of throat. did 38 trips of TOMO PEG tube,Cysplatin,Taxotere & 5fu 1st 4th and 7th week, changed to Erbitux for the last 4 weeks. 1st PETS since end of TX..CLEAR 6mos out and 2 nodes are hot. Bilateral neck dissection on 10/31/08. Clear Scan 3/31/09 & 8/02/2010
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