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.

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.

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

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.

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!!!

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.

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!

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

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.

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!

Hi Sue

Alex had the same regimen (see signature). He began to suffer around day 5 with thick saliva, inability to cough it up and nausea. He could not get out of bed. The good news is that after a week of wishing he was dead, he improved to "almost normal". By the time the next cycle was due, he was good to go and almost welcomed the experience as he felt he was doing something active against the tumour.

I cringe when I hear about the health care professionals who make comments as yours did saying your husbands reaction is extreme because this can be unsettling for both the partner and the patient who may interpret this as some sort of failure or weakness. I would disagree with the nurse and say that there are enough people who suffer as your husband has to make it "not unusual" rather than "extreme". The nurse would have been better off looking for practical solutions rather than passing judgement. I think, like others, that the state of one's nutrition has a large impact, and if your husband was underweight or ill from the cancer at diagnosis, he may well be starting behind the eight ball in the first place, putting him towards the higher end of the misery scale. Remember too, that cisplatin is a nasty drug that causes all of manner of grief - adding Taxotere and 5FU just takes it to a whole new level. BUT it also improves your husband's chances of survival AND you will get through it - most do and Alex is just one testament to that.

In Alex's case, he was underweight (60kg or 132lbs) at diagnosis and it was much more than sore throat! It was nausea (and vomiting if he forced himself), loss of appetite, bad taste and pain. Eventually, he was hospitalised when his weight dropped to 48kgs (105lbs) after the second round and the doctors threatened to discontinue treatment if he couldn't gain weight.

The best thing that happened to Alex was a pump. When he was hospitalised they put him on a pump and taught him how to use it. This was a slow drip feed that gave him 2000 calories overnight via a pump and is attached to a PEG. This got around the nausea and vomiting which happened every time he tried to either eat and swallow or use a syringe to deliver liquid nutrition through his PEG.

We also found that changing brands of liquid formula made a difference. When Alex went onto the pump, he was changed to Nutrison and never looked back. Unfortunately, in Australia, this formulation is more expensive than the stuff they originally started him on (TwoCal) so when an offer was made by one of my work colleagues to supply TwoCal that could be administered by pump we jumped at the chance. Alex's vomiting returned.

We learned that it wasn't only slowing down the feeds that made a difference, but the brand as well.

By now, you will have experienced a second round of chemo? And hopefully will have received assistance with your husbands nutrition? A PEG maybe? Please let us know how you are faring.

Karen
PS Alex is now two and a half years beyond the end of treatment, is back at work and doing very well. He is still underweight and relies on liquid nutrition (not TwoCal which still makes him sick) Goal is 75kgs (165lbs) which on his frame of 6'1" is still "bean pole" territory.

Did they not give an anti nauseant for breakthrough ? you can use it any time.

Sue, my husband just finished his 3rd round of the same treatment. The 1st round was the worst with fatigue, nausea and a very sore mouth. We discovered if he took a nausea pill then ate or drank calories about 20 minutes later, the nausea was minimized. Pain meds helped with the sore mouth. For nutrition I bought frozen yogurt, fresh fruit, milk and powdered protein and mixed it in my Magic Bullet. Quick and nutritious.

The 2nd & 3rd chemo had the same side effect but not nearly as much as the 1st. He generally feels pretty good in spite of the chemo. I also advanced from my Magic Bullet to the NutriBullet. See the website. It's perfect for nutrition even if he ends up with a feeding tube. I use the entire vegetable/fruit in this one. I much prefer to use the fresh stuff if possible while trying to keep the protein and calories at a max.

I also do serving-size sugar free jello and puddings with protein powder. Easy to grab and soothing on the mouth.

Hope this helps.

I had TPF..Taxotete, Cisplatin and 5-FU in 2009 as induction chemo, which is 5 days continuous infusion. It nearly killed me. In ICU for 2 months, hospital 6 months, lost 110 pounds in one month, paralyzed, blinded me and had every type side effect... Induction chemo is controversial, since it can delay the real trestment cure, and that is radiation, surgery, radiation may be concurrent with chemo too.

I had induction chemo, 3 one week stays in the hospital getting all three chemos by drip 24/7, each week followed by a 2 week recovery period. They included anti-nausea drugs in the drip so I never felt nauseous but did have mouth sores. They also kept me hydrated. Rinsing with a salt or salt and baking soda solution helped the mouth sores some but I was also given a liquid Xylocaine solution to rinse with. I had little appetite and subsisted on Ensure, mostly, but Boost HVC is better. There is also Scandishake which tastes more like a real vanilla milk shake.

During the two week recovery period I drank lots of water and Gatorade. I followed that up with 7 weeks of radiation with one 45 min chemo session per week. Over the course of the entire treatment I lost 20+ pounds. Pre-radiation I had a PEG food tube installed and used it exclusively after a week or two of radiation. I have since regained 5+ pounds. I did feel more and more exhausted as the treatment continued and spent most of my later recovery time sleeping.

Everyone will tell you how important hydration is and it is TRUE. One should drink about 64 oz a day and supplement the liquid diet with water/juice/Gatorade. I could not tolerate most juice with my mouth sores or any later with my radiation burnt throat.

Sounds like your H needs more ant-nausea drugs.

Hi Diane, Can you tell me what the difference is between the Magic Bullet and the NutriBullet, they look very similar. I do a lot of jucing but also use a Magic Bullet, which I have had some problems with the plastic gaskets getting chopped up.
Sally