| Joined: Apr 2014 Posts: 8 Member | OP Member Joined: Apr 2014 Posts: 8 | my husband has received 3 doses of Erbitux and undergone 6 sessions of radiation therapy. I know fatigue is normal but when is it too much. I voiced my concern to the nursing staff at the chemo clinic, but they just said fatigue is normal. He is basically this side of a coma. He is arousable, but would continue to sleep if I let him. He will shower himself, but didn't have enough energy to shave. His blood work was good. don't know if this is depression, or brought on by the chemo/radiation shcedule. Also, he asked today what type of cancer he had..... I realize he may get chemo brain, but we have basically just started treatment. He doesn't want me to say anything to the doctors because he doesn't want them to hold or stop his treatment. His response.... well when I wake up I will be all better! Help!!!
Husband: HPV16+ SCC base of tongue 2 nodes+ 7 Erbitux doses, 70 gry completed June 9,2014. Now we wait!
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | They are correct that treatment can cause fatigue, as well as cancer itself, medications, any underlying medical conditions, malnutrition, dehydration, lack of sleep, being bed ridden, no exercise, age, depression, psychological, etc. It's difficult to answer what is too much fatigue, and is best answered by his doctors, and by them doing an evaluation, physical exam, blood work, and correcting any deficiencies noted, and seeing some of the above mentioned items are properly addressed if not met.
As far as nutrition, as quick guide, you basically need 12-14 calories per pound of weight to maintain it. 15-17 calories to gain, between 1 grams of protein for each pound of weight, some say twice that for healing, recovery, and half your body weight in liquids every day, but can be higher, lower based on needs, and instruction by your medical team.
I conserved energy when I could. I used a shower chair to sit on when showering, used a walker, and sat on that when cooking, which was way after treatment, and used canned nutrition solely during treatment or ordered out.
Mention your concerns to his doctor(s), and your husband's loss of mental status, which may be of concern.
Good luck with everything.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | 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 | You will hear this over and over... everyone is different and will respond in their own unique way. Some struggle from day 1 while others barely notice any side effects at all.
There could be many reasons behind why your husband is so fatigued. I would take a good look at his intake and start there, next check what medications he is taking.
For your husband to get thru the treatments with the best results, every single day he should be taking in a MINIMUM of 2500 calories and 48 oz of water. If he can get more in thats much better and can only help him. The day of and after chemo his water intake should be higher, like 64 oz of water. Some here will say that should be his daily water intake. You can also ask the doc or a nutritionist to help you with this.
Many medications will have side effects. Pain meds and even benedryl will make the patient tired.
As the treatments continue dont be surprised if your husband doesnt get progressively more fatigued. Radiation has a way of building up and even after he finishes the treatments it will still continue to work for a couple more weeks.
I remember when I went thru rads/chemo in 2007, it was all I could do to get out of bed. I would set the alarm to get up 10 minutes before my kids came home from school. I quickly got dressed and went to sit on the couch pretending I was there watching tv all day when I was really sleeping all day.
Treatments are rough! Wishing you both all the best with everything. 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 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | He sounds pretty normal. Many different responses. The harsh fatigue I had. The first weekly chemo was not bad. The. Second round had on my back for 5days. The third round and it 8 days down , just enough energy to get. This was the induction treatment which was followed by chemo and rads. The weekly chemo had minimal side effects.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I disagree Don, after only 6 rads he should not be anywhere close to what she is describing.
MLC, I'm with you, this needs immediate attention. Someone needs to find out what's going on, be it depression, meds, etc. Yours and his "journey" has really just begun and you need to get a handle on this NOW because believe me it can quickly (and usually does) get much much worse.
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.
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | MLC - It really is SO important to make sure to check and re-check everything that is going on with meds, nutrition, liquids - what goes in and what comes out as well. Different people react differently so it's important for your husband's doctors to know this. Reactions can change to different meds. My son had such fatigue, and slept so much I got to the point of checking his breathing. I had to wake him to take meds and when he resisted my "telling him what to do", I made a chart of all the meds and his liquid and nutrition intake and made sure he checked anything off that he did so he wouldn't think it was his mother telling him what to do. (I had my own copy so I could verify with his.) On the chart I also listed all the doctors' names and phone numbers as well as the nice office assistants so that when I called them, I was able to let them know what was happening and I could mention the name of the last person I talked to at the office. This really helped. BTW - as your husband's caregiver, you have the right to talk to his doctors and express your concerns.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | MLC,
The difficulty is the fatigue makes you want to lounge more which slows everything down in the body and makes you more tired. Without breaking that cycle by sitting up at least throughout the day and avoiding naps as much as possible, it starts affecting sleep patterns and that slows healing, increases pain and also contributes to many of the neurological deficits created from chemo and/or rads.
The important thing is keep the doctors in the loop just as you are. If you believe it is beyond just being whooped from the treatment, you need to be a bit more stern with the medical team. If it troubles you, make it trouble them as well, or nothing will get addressed. It's not the time to be timid.
As David says, get the attention now, it will get tougher with more rads.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | The chemo I received each week during showed no side effects. Chemo-rads was where rad did its number.
As stated if you feel bad, call the doctor.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Apr 2014 Posts: 8 Member | OP Member Joined: Apr 2014 Posts: 8 | Thank you all for your responses. We saw the radiation oncologist yesterday and she was not that concerned about the excessive fatigue. We see the oncologist tomorrow. Husband has perked up a bit, so maybe this was just a fluke thing.
Husband: HPV16+ SCC base of tongue 2 nodes+ 7 Erbitux doses, 70 gry completed June 9,2014. Now we wait!
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | That's good news, MLC - Hope your husband has many more "perked up" days!
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | MLC my view on doctors and nurses has changed during treatment. Previously I would go to a doctor, they would diagnose it, give me a pill and that would fix it.
For more complex things like cancer treatment, its like steering a ship. From experience I expect if I turn the wheel this much the ship will do this. But every ship is different, and they have to make course corrections to compensate, its not set and forget. Thats the difference with medical supervision over complex treatments. Don't be alarmed when things happen differently to what you expect. You are closely supervised during treatment and they can make adjustments to the treatment as you go. Make sure you and your husband voice your concerns and the medicos can assess the best course for you as you go.
Last edited by OzMojo; 05-01-2014 06:54 PM.
Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | MLC - glad that your husband has perked up a bit. I think that if I had to go through that sort of therapy, I would want to sleep through it. Are you able to take a bit of a stroll outside? I firmly believe that one of the things that helped my husband the most was that we walked our old dog every morning. Getting some fresh air every morning is a boost to the body as well as the spirit. Best wishes to you both! Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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