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Tammy63 Offline OP
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I don't know if anyone else feels this way. The best way to describe how I feel is like having a hangover from drinking a lot the night before. My body just doesn't feel right. The doctors just tell me that I am in a very slow remission.
Since my treatments I have been diagnosis with Pancytopenia from having 2 bone marrow biospies. There is no treatment only if my hemoglobin goes very very low which would mean a bone marrow transplant. My lab are showing my red cells at 2.83 and platelets are 97. My white cells are 4.4 which is within the margins. It just doesn't seem like with these numbers I should feel the way I do. Yes, I agree to feel tried and week. I guess I am hoping that someone else out there could maybe relate to this.


Tammy 43 yr non smoker- Dx-10/11/07 Stage 4 Tongue Cancer Surg.10/17/07, 1/4 Tongue and 14 Lymph nodes 5 positive, Peg tube/Chemo port,Chemo 3 wks/Radiation 6 wks begins 11/07 end 02/08.Teeth removed prior to radiation. PetScan 05/08 CLEAR 09/09. 2011 diag. w/osteoradionecrosis.100 HBO's
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Cancer fatigue is a well known side effect of treatment. The treatment also does a number on the immune system and some the the numbers will never return to to pre Tx levels.

There is no need for concern as your immune system will make a full recovery, if it hasn't already and part of the "new normal" are the the changes in your body chemistry and alteration of blood chemistry numbers.

Last edited by Gary; 01-27-2010 01:15 AM.

Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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Tammy, as Gary just told you, this is poart of our war. I don't like it either but accept it.


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
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Tammy,
Have you had your thyroid checked? If not, you need a blood test to check your thyroid TSH level, T3 and T4 numbers. You also need to know what your TSH level was prior to radiation. The hospital that did you blood work prior and during radiation should have these numbers. Do not accept a reading that says you 'are within range'. You need to get your TSH level back to what YOUR normal was before treatment. A tiny pill daily will do this. Hope this helps.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Tammy63 Offline OP
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Yes they have checked my TSH, T3 and T4 and they were are in normal levels. I was hoping that would have been my problem. So frustrating....


Tammy 43 yr non smoker- Dx-10/11/07 Stage 4 Tongue Cancer Surg.10/17/07, 1/4 Tongue and 14 Lymph nodes 5 positive, Peg tube/Chemo port,Chemo 3 wks/Radiation 6 wks begins 11/07 end 02/08.Teeth removed prior to radiation. PetScan 05/08 CLEAR 09/09. 2011 diag. w/osteoradionecrosis.100 HBO's
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Tammy,

The problem with the TSH levels is that they are very broad in the normal range so some find it's important to know what your pre Tx level was and try to get back to that level as opposed to just staying in the "range".


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Tammy,

I'm 18 months out of treatment/surgery and struggle with fatigue. When I was on opiate pain medications it was much worse...crippling infact. Since getting off of all of the pain meds a month ago and resuming an exercise program it's helped the fatigue immensly.



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.
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Tammy

I too had accepted extreme fatigue and that hangover feeling as just the result of having so much radiation because my doctors (at a Comprehensive Cancer Center yet)kept insisting my thyroid levels were "within range". Here is my canned screed
[quote]Radiation very often damages the thyroid and leaves the patient cold and weak yet because there is controversy over what is the right TSH level with labs having a 5.5, a 4.5 or the most advanced ones in tune with the 21st Century, 3.0 as the highest acceptable level, it is very very hard to get a doctor to prescribe thyroid medication without pre TX baseline. I am a personal example since before TX, I had a TSH of 1.6 and after TX it shot up to 4.3 but no doctor would help me these last two years until I discovered blood tests done by a cardiologist that I got the results from the day after finding out I had cancer so I had paid no attention to the 1.6 TSH. With that, I have finally been started on one little pill that my endocrinologist thinks will bring back both energy and warmth.
I hope you have results of a pre TX TSH test
Disclaimer: I have a degree of Doctor of Law, NOT Medicine[/quote]


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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Also have them take a look at your B-12 levels. Mine was very low and I am now giving myself bi-weekly injections of B-12.


DX 2/10/09; Stage 1 SCC side of tongue; Partial Gloss; PEG in 3/3/09; 3 Cisplatin; 35 IMRT; PEG out 7/17/09; Eating via mouth and walking 3 miles/day 4 wks after treatment end. 50 pound weight loss; Clear PET 09/09 and 09/10
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Tammy63 Offline OP
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My B-12 was fine but she gave me a few shots to see if it would help with my energy level, but it didn't.
Charm2017 - Thank you for the info I am just now pulling out all my medical records ( lab) from before by Cancer and hoping to find my Thyroid levels. If just one little pill could help...Oh how great that would be to just feel alittle better. I will check back..


Tammy 43 yr non smoker- Dx-10/11/07 Stage 4 Tongue Cancer Surg.10/17/07, 1/4 Tongue and 14 Lymph nodes 5 positive, Peg tube/Chemo port,Chemo 3 wks/Radiation 6 wks begins 11/07 end 02/08.Teeth removed prior to radiation. PetScan 05/08 CLEAR 09/09. 2011 diag. w/osteoradionecrosis.100 HBO's
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Tammy63 Offline OP
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Well I couldn't find a previous TSH T3 or T4. So all I have is my one test done on 1/29/09 that shows the following.
TSH - 1.29 and the range is .04 - 4.59
T4 - 7.3 and the range is 4.5 - 12
My next appt. I will request to have another TSH etc. done


Tammy 43 yr non smoker- Dx-10/11/07 Stage 4 Tongue Cancer Surg.10/17/07, 1/4 Tongue and 14 Lymph nodes 5 positive, Peg tube/Chemo port,Chemo 3 wks/Radiation 6 wks begins 11/07 end 02/08.Teeth removed prior to radiation. PetScan 05/08 CLEAR 09/09. 2011 diag. w/osteoradionecrosis.100 HBO's
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Actually Tammy, it may not be the thyroid with that level reading. I was a 1.6 before TX and you are near that now.
Are you getting enough calories & nutrition? Exercise also helps. All trite advice but still reliable
I just started making coffee again in the morning and putting it down my PEG tube and the caffeine is really helping.
Chronic fatigue post cancer TX is a hard beast to figure out even though it is so common amongst us. I do keep quite active but have to take naps - Hope some OCF family member here can be more helpful.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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At 1.29 TSH, it doesn't sound like a thyroid problem, but that depends on what your 'old normal' was. If I get too low, I sometimes feel tired. Do you have all your blood tests from radiation? If not, I'd check with whoever has those records to see if they ran a TSH.

After radiation, the dietician put me on 500mg vitamin C a day, Zinc sulfate for taste and fast healing and a multivitamin. Are you taking any supplements? You might ask your doctor.

How is your diet and execise? If not good, has a dietician been consulted?

I hope you get to the bottom of this soon. That is too long to still be feeling exhausted.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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If you had IMRT they would have programmed it to avoid the thyroid, if not then you may indeed have thyroid problems post Tx. This can be corrected with Synthroid or other thyroid medications. They will have to fiddle with it for a while to attain the proper balance.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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Gary

My understanding was that my RO programmed the IMRT to give my thyroid as little radiation as possible, but that he could not avoid "collateral damage" to the thyroid entirely and still hit my tumor hard enough due its location and size.
However, it was a different story with the Cyberknife treatment 18 months later as that was precise enough to actually avoid my thyroid entirely. The cyberknife pictures were awesome, almost psychedelic with these amazingly thin blue beams - and the computer monitored it real time to adjust them on the fly. I had asked if we could do Cyberknife the first time around and my RO had indicated that the downside of it's pinpoint accuracy was that it was impractical for a tumor as big as mine had grown, hence the IMRT. Since we caught the recurrence early, cyberknife was not only an option, but according to him, the only one as the rest of my face, throat, neck and shoulders could not handle any more IMRT radiation.
Charm

Last edited by Charm2017; 01-30-2010 10:17 AM. Reason: typos

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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