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Sue60 Offline OP
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My husband had his first chemotherapy infusion 8 days ago. He has spent the majority of each day, since day 3, lying in bed. Additionally, he is not eating and generally not feeling good. He had blood work done yesterday and white blood cell count was low. The nurses in chemo said tiredness was expected, but his side effects seem extreme. Is this a common experience from others who have had this treatment? Treatments are scheduled 1/3 weeks for 9 weeks initially but he says he doesn't want to have another one.


Thomas is my husband who was diagnosed 10/21/2012
stage IVc,T4a,N2c,M1, hypopharyngeal scc, bilateral cervical nodes, spots in lung
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Sue unfortunately yes this can happen. It can hit you pretty hard. The oncologist can adjust the dosage so it is a little easier to tolerate.

I am assuming your husband has oral cancer and is being treated for that. Is he also getting radiation? Where exactly is his cancer?

Please add a signature so its easier to help you. Click on the "My Stuff" tab, on the drop down menu, click on "edit Profile". Scroll to the bottom and type your husbands info in the white box and click "submit". Without a signature or any type of history its pretty difficult to answer your questions.

The biggest thing to pay attention to is your husbands intake. he MUST get 2500 calories in daily and a minimum of 48 oz of water. If his intake isnt that much then he will feel awful. Water is especially important to flush the chemo from his body. It can be very hard on the kidneys and cause serious trouble if he doesnt take in enough hydration. He can get hydrated at the chemo lab with a doctors prescription.


Christine
SCC 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 smile
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Posts: 111
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Hi Sue, I had the same induction chemo. I did not have too big an energy loss after the first cycle, but after the second session I needed a blood transfusion because of low white blood count. The chemo did really put me off food and gave me a sore mouth before I started radiotherapy. It is a harsh treatment and will effect people differently, but it is really important to make sure the Drs know what effect is having. There are various options to help deal with symptoms.

Please take note of Christine's advice on nutrition and hydration. It is very important, especially if he is feeling so low at present. Please let us know a bit more about his diagnosis and treatment.

Best wishes. Sally

Last edited by saxicola; 11-11-2012 03:04 AM.

Dx 10/11 51yrs LBOT Stage 4 2nodes HPV16+. Non-smoker mod alcohol.
10/11 Induction chemox2 (Docetaxel, 5-Flu, Cisplatin) then Cisplatinx2 IMRTx30. Ended 01/13/12.
12/07/11 RIG. RIG removed 05/05/12.
4/12 CT scan clear. Visual scope checks clear as of 10/13. Learning to live with eating challenges.
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Sue60 Offline OP
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Thank you for your replies. I apologize for my initial lack of detail. I have added a signature with my husband's diagnosis. The doctor has scheduled 9 weeks of chemotherapy (1 every 3 weeks) and will then re-evaluate. Possibly 9 more weeks of chemo, then 7 weeks of radiation, depending upon Thomas' progress. He spent 6 hours in chemo infusion on 11/2 getting cisplatin and taxotere, and took 5fu (Fluorouracil) home with pump for 5 days. He is not eating anything, he says his throat is very sore. Ice water is the only liquid he will take. The unflavored Benecalorie supplement added to water is the only source of calories he gets at the moment. Not 2500 calories as Christine urged. He has blood work done each Friday and doctor ordered additional fluids this past Friday at our request. He is scheduled to see his doctor before his next treatment in two weeks. Should we ask for an earlier appointment? I would also be interested in other's experiences with this drug combination, understanding that each person reacts differently. Thomas seems heartened when he hears that someone else has experienced the same thing and felt better at some point.

Last edited by Sue60; 11-11-2012 07:39 AM.

Thomas is my husband who was diagnosed 10/21/2012
stage IVc,T4a,N2c,M1, hypopharyngeal scc, bilateral cervical nodes, spots in lung
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There are many who have similar diagnosis as your husband. We do understand how crappy he feels, we have been down that road too. He should have some anti nausea meds like zofran to help.

The nutrition and hydration are huge parts of treatment. If Thomas is not taking in enough calories he will wear himself out very quickly and end up hospitalized for malnutrition. This happened to me and I was one unhappy patient! Make sure you discuss his lack of eating with his doctor. try to pay close attention to exactly what he takes in every day and then check it out online how many calories are in what he eats. To be brutally honest, if he is unable to eat due to a sore throat, it wont get better anytime soon. He can take pain meds to help and try a prescription for magic mouthwash to numb his mouth for a few minutes while he eats. If he is not able to eat enough to sustain himself he will need a feeding tube. Even if he gets a tube, he still must swallow water every single day to keep those muscles active. believe it or not your body can 'forget' how to swallow.

I would ask for an earlier appointment and get his weight checked. Have a serious discussion with the doctor about his not eating. Ask for fluids every other day to help keep him hydrated.

Good luck!!!



Christine
SCC 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 smile
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Posts: 8,311
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Look this is VERY IMPORTANT....you must get calories into him and water or believe me it will turn very ugly very fast. There are liquid drinks that can be swallowed very fast that contain a lot of balanced calories. Boost VHC is one. In the small 8 oz can it packs 560 cals. He needs to drink 5 to 6 of those a day and 8 of those cans a day filled with water. If you let him start loosing weight now he won't even be able to begin radiation and without radiation he has zero chance. Sorry to lay this on you but you are his caregiver and sometimes you must be the nurse from hell and this is one of those times.


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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So sorry to hear your husband is feeling so bad. My husband was on both Zofran and Compazine for the nausea. He had zero desire to eat anything telling me that everything tasted horrible. Has the doctor talked to you about a PEG tube? It's really early in the game and you and your hubby have a long....road ahead. My husband would have never made it without the PEG. He had it in for 4 months but used it for 3. Best of luck!


Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
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Posts: 805
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Ok...We had the same ugly 3. Kev had them all together as well as fluids and tons of anti nausea stuff. He did feel really bad for the first week, but, as David suggested, I was the nurse from hell and made him drink and eat. He also went for fluids almost every day and that made a huge difference. See if they will prescribe fluids for him 3x a week at least. We would do a bp with an at home machine. If it was lower than 110/60, we went in. It almost always was. He would get mad at me for making him go, but afterward he felt so much better.
There is a mouthwash combo referred to as the magic mouthwash. He can rinse with this and chug an Ensure or boost or something. There is also a drug called Lortab that worked immediately and Kev would eat something right after. Usually scrambled eggs or pasta with butter.
I know how hard this is. Kev was not well the first round, but by the time we did the second round he was prepared and did much better. We started a probiotic with it so that seemed to help his bowels. Be sure your oncologist approves though.
I would call your doc in the am and just have him checked. I'm sure fluids will help. More than 3 days and Kev was miserable!
Good luck tomorrow. Keep in touch.
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Posts: 46
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Had 6 weeks of chemo last autumn and then triple strength 18 weeks this spring/summer (cisplatin every 3 weeks and cetuximab on weeks inbetween for a full day).
Someone mentioned a PEG feeding tube on an earlier reply and this is a great solution. I had one fitted and it was my saviour, as I just didn't want to eat anything.
I lost 2 and a half stone,was admitted to hospital 3 times due to vomiting or low blood counts and had a horrendous rash.But it is doable and I got through it though I did seriously think about quitting treatment at least twice, but then again who wouldn't ?
Keep on fighting - a month after my treatment ended I was eating almost normally.
Also - keep up the water intake and try a few drops of lemon juice in same - it should take some of the metallic taste away.


50 yrs.Non smok.Mod drink.
Tongue canc SCC T2N0M0.
Surg. Jul '11 1/3 rd of tongue rem. & sel. neck diss.PEG fitted.
Aug '11 6 wks chemo/radio.3 more canc. nodes rem.
Feb '12 18 wks chemo.
Nov. '12 Mod rad neck diss on right, & pec flap rep. rem. of tumour under chin. More rad to follow in 2013.
**update** Passed away September 26, 2013
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Sue, I had my first treatment of Cisplatin on Nov 5. Once I stopped the anti nausea meds it came back. I had a horrible weekend. On Monday, Nov 12 I actually vomited and thought ok this is enough I should be past this by now. They now have me taking Ativan regularly and it works! I can eat and drink now and do not feel nauseous. It is in the Valium family so until he gets used to it, he will feel sleepy. My new problem is the soreness deep in my throat. Hope he does better soon!

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