It takes a long time to heal. I was not prepared for the post treatment.
Comments
-
Iron Level
Right after I finished treatment I too what weak a lot, I went and had all kind of test done and the doctor could not find anything wrong with me. One of the ladies at work told me to start taking some Iron pills, I had my doctor check and my Iron levels were good. But on her advice I started taking them and before long I was feeling a lot better and stronger, I still get my Good and Bad days as we all do but there are more good ones now then bad.
Hope this helps, another thing you can check is his vitamin D, low D levels will also make him feel tired and weak all the time.
Wishing you well
Hondo0 -
He is going to see hisHondo said:Iron Level
Right after I finished treatment I too what weak a lot, I went and had all kind of test done and the doctor could not find anything wrong with me. One of the ladies at work told me to start taking some Iron pills, I had my doctor check and my Iron levels were good. But on her advice I started taking them and before long I was feeling a lot better and stronger, I still get my Good and Bad days as we all do but there are more good ones now then bad.
Hope this helps, another thing you can check is his vitamin D, low D levels will also make him feel tired and weak all the time.
Wishing you well
Hondo
He is going to see his internist this Wednesday. A new doctor. We have been going to a local clinic for our common colds and they have PA's most of the time. I want an actual doctor to follow his history and future to make sure everything is running smoothly. I wish I set this up at the beginning. Live and learn.0 -
Good to know that he has anarndog64 said:He is going to see his
He is going to see his internist this Wednesday. A new doctor. We have been going to a local clinic for our common colds and they have PA's most of the time. I want an actual doctor to follow his history and future to make sure everything is running smoothly. I wish I set this up at the beginning. Live and learn.
Good to know that he has an appointment. Really takes a long time to heal. My surgery a year ago was in August, finished radiation mid October, thought I would go back to work at the end of November, was I wrong. I did go back in January, laid down at lunch time each day, went home after work, "ate" and went to bed. Usually in my favorite chair on Saturday and that was only to be able to get to church on Sunday. Eating is very slow. I had a smoothie each day, sometimes it took me the entire day at school to finish. Yogurt, strawberries, 1/2 banana, 1 T. Pom juice and 2 scoops of protein powder. Did you ever look up the Magic Mineral Broth on the internet? The recipe is online. Just the smell of the broth brewing gives you an appetite. Once I could eat we added tortilline (sp) and spinach. You could use the broth for any soup you usually make. It is so good for you. Take a deep breath, you have gone through alot also, each day is different.0 -
Have you tried Protein Shakes?
My husband, who is 7 weeks out, still can't eat a lot. He never had a PEG so he's had to get everything down by mouth. His throat is still burning at this point so he does a lot of shakes. He'll mix about 5 scoops of whey protein powder, a packet of carnation instant breakfast (for the vitamins), milk, ice cream and sometimes peanut butter. He's also thrown in a boost or ensure for extra calories. He tries to do 2 of these a day. At least this is getting the protein and some calories into him. He'll eat other soft items but like your husband it takes so long and sometimes hurts so bad going down he'll just stop after a few bites.
As for the mood swings, we found that his were caused primarily by one of his pain meds. Ask your doctor and maybe they can switch something out.0 -
FOUR MONTHS IS STILL THE NORM
I too was not very far along at 4 months. I had lost a total of 70 lbs. I have always been one of those anal goal oriented types and finally started to set some daily and even hourly goals for my self to meet and or exceed. I ofeten fed myself with the PEG to the point of vomiting to try to stretch out my stomach so it would hold more. Doc's did not like it, but I tend to overdo anything I take on.
I found a Protien / Carbo rich weight gain shake at my gym and would try to take 3-4 of these 900 calorie shakes / day. It was tough, but worked for me. I found the more activity I added to my day, the more my body actually felt like taking in nutrition. I kept a journal of everything I took in regarding nutrition and everything I did each day. As soon as I finally saw just a little day to day improvmement, my mental attitude really started to change. IE: 5 min on the treadmill in monday meant 7 minuted on tuesday, ETC ETC.
Try to get him to find something, no matter how miniscule it may seem, but if it works, expand on it and build from there. The two things that changed my mental attitude the most, was to return to the gym and return to work. Even if the gym was to just stretch and walk on the treadmill, and even if a visit to work was just to chat with my employees for 30 min. and then go back home.
I can tell from your posts, you are an extremely motivated person, and are very proactive regarding hour hubby's care. He will rebound back well with you in his corner.
My wife stayed on my **** like "white on a golf ball." It helped me, and it will help your hubby.
Best!!
Mike0 -
Caregivers never stop givingarndog64 said:He is going to see his
He is going to see his internist this Wednesday. A new doctor. We have been going to a local clinic for our common colds and they have PA's most of the time. I want an actual doctor to follow his history and future to make sure everything is running smoothly. I wish I set this up at the beginning. Live and learn.
That is what we love most about you caregivers you never give up on us. My wife had to come with me again to my acupuncture treatment in case I need anything. She smiled when I look at her with all those needles in me and said see Mama I am a big boy now I can do it all by myself. She was there wishing she could take the needles for me.
God bless and keep you
Hondo0 -
Eatingarndog64 said:He is going to see his
He is going to see his internist this Wednesday. A new doctor. We have been going to a local clinic for our common colds and they have PA's most of the time. I want an actual doctor to follow his history and future to make sure everything is running smoothly. I wish I set this up at the beginning. Live and learn.
Hi Arn,
Oh, how I relate. I would come home from work to find that he had eaten less than 300 calories all day. I am very diligent about counting calories. Do you have a nutritionist? Ours was very helpful. KTeacher mentioned the Magic Broth. It really is very good. I made a huge pot and froze it in ice cube trays. Just pop some cubes in a pan and add some noodles or ground up proteins such as chicken or turkey. Sometimes I added won tons as well and he seemed to manage those quite well.I had to keep reminding Daryl that as long as he was losing weight, the healing process was greatly diminished since his body was busy slowing down his metabolism.
He didn't really start feeling better until he started forcing himself to eat or even just putting enough meal supplements into his PEG.
Still has a long way to go but at least he has enough strength to go back to work now.
Wendy0 -
CaregiversHondo said:Caregivers never stop giving
That is what we love most about you caregivers you never give up on us. My wife had to come with me again to my acupuncture treatment in case I need anything. She smiled when I look at her with all those needles in me and said see Mama I am a big boy now I can do it all by myself. She was there wishing she could take the needles for me.
God bless and keep you
Hondo
Hondo,
Not all of us are so noble. I'm just too old to train a new dance partner-plus I'm miserable with power tools:)
W.0 -
Depression
can be a significant contribution to these problems. Been there. Done that. It is understandable under the circumstances. To a significant extent it is situational, and treatable. It certainly needs thought of, by both the patient and the caregiver (who is not exempt from depression either!), and discussed with the treatment team. I'm not saying this is the primary problem, but it can certainly contribute.0 -
Thyroid
If they are doing bloodwork at his appt, I would ask them to check his thyroid. I had a similar issue where I was feeling pretty good and then all the sudden started going backward. I went from holding a steady weight to losing 4 pounds a week even though I was taking in 3000 calories a day, I had no energy, and would get very shaky and weak. The doctor was doing my usual routine bloodwork and decided to check my thyroid to see if it was contributing to the problems. Turns out that I have developed Graves Disease and my thyroid numbers were off the charts. I was given a medication to treat it and although it can take 2 months to get everything leveled out again, I feel like a new person already and the weight loss is starting to reverse itself. Just a thought... *Hugs*0 -
So much workJamie_Ann said:Thyroid
If they are doing bloodwork at his appt, I would ask them to check his thyroid. I had a similar issue where I was feeling pretty good and then all the sudden started going backward. I went from holding a steady weight to losing 4 pounds a week even though I was taking in 3000 calories a day, I had no energy, and would get very shaky and weak. The doctor was doing my usual routine bloodwork and decided to check my thyroid to see if it was contributing to the problems. Turns out that I have developed Graves Disease and my thyroid numbers were off the charts. I was given a medication to treat it and although it can take 2 months to get everything leveled out again, I feel like a new person already and the weight loss is starting to reverse itself. Just a thought... *Hugs*
I just commented to Doug today as we ate lunch that it still seemed like so much work for him. I hate that he sees eating as a job, especially when it is my wonderful home cooking. However, it's work and not fun.
You can't rush the progress, any more than you can speed up a pendulum or make the earth turn faster. You are doing a great job and so is he.0 -
Time to recoverDrMary said:So much work
I just commented to Doug today as we ate lunch that it still seemed like so much work for him. I hate that he sees eating as a job, especially when it is my wonderful home cooking. However, it's work and not fun.
You can't rush the progress, any more than you can speed up a pendulum or make the earth turn faster. You are doing a great job and so is he.
This is my first post. I am the caregiver for my hubby. We are almost through week 4 of radiation, and it's been very difficult for him. He had a nasty reaction to the initial loading dose of Erbitux and still seems to be feeling the effects of that...nausea, the rash, general malaise. The oncologist was afraid to give him any further doses, but the radiation oncologist broadened the field of radiation to the throat. The farther we get, the more I think the doctors deliberately don't give us all the bad news about the treatment for head and neck cancers. Seems as if they like "breaking it to us gently." We were thinking treatment would end and he'd start healing and bounce back fairly quickly. Seems that's another thing that is just not so. Right now, we live for the weekends so he has a couple days to heal a little before they smack him down again. He's not a happy camper, and I'm having trouble keeping "up" for him.0 -
No one dances through this treatmentPointerSister said:Time to recover
This is my first post. I am the caregiver for my hubby. We are almost through week 4 of radiation, and it's been very difficult for him. He had a nasty reaction to the initial loading dose of Erbitux and still seems to be feeling the effects of that...nausea, the rash, general malaise. The oncologist was afraid to give him any further doses, but the radiation oncologist broadened the field of radiation to the throat. The farther we get, the more I think the doctors deliberately don't give us all the bad news about the treatment for head and neck cancers. Seems as if they like "breaking it to us gently." We were thinking treatment would end and he'd start healing and bounce back fairly quickly. Seems that's another thing that is just not so. Right now, we live for the weekends so he has a couple days to heal a little before they smack him down again. He's not a happy camper, and I'm having trouble keeping "up" for him.
We have to remember evey day what is being treated. The treatments are severe, but the disease is more severe. And we do recover. My best to you and your husband.0 -
PointerSister - RecoveryPointerSister said:Time to recover
This is my first post. I am the caregiver for my hubby. We are almost through week 4 of radiation, and it's been very difficult for him. He had a nasty reaction to the initial loading dose of Erbitux and still seems to be feeling the effects of that...nausea, the rash, general malaise. The oncologist was afraid to give him any further doses, but the radiation oncologist broadened the field of radiation to the throat. The farther we get, the more I think the doctors deliberately don't give us all the bad news about the treatment for head and neck cancers. Seems as if they like "breaking it to us gently." We were thinking treatment would end and he'd start healing and bounce back fairly quickly. Seems that's another thing that is just not so. Right now, we live for the weekends so he has a couple days to heal a little before they smack him down again. He's not a happy camper, and I'm having trouble keeping "up" for him.
First welcome to the forum.....
Now, the rest of the story...if you have followed along or read up from previous postings here.
Every one is different...
As for the radiation, you basically still are cooking for 3 - 4 weeks post radiation. At four weeks, you are just getting into the worst of it. It doesn't neccesarily get worse than you are dealing with, but it more than likely isn't going to get any better for the next 7 - 8 weeks.
We have a SuperThread on here that offers tons of very good information. I highly suggest you check it out...
SuperThread
Best,
John0 -
Hi SisterPointerSister said:Time to recover
This is my first post. I am the caregiver for my hubby. We are almost through week 4 of radiation, and it's been very difficult for him. He had a nasty reaction to the initial loading dose of Erbitux and still seems to be feeling the effects of that...nausea, the rash, general malaise. The oncologist was afraid to give him any further doses, but the radiation oncologist broadened the field of radiation to the throat. The farther we get, the more I think the doctors deliberately don't give us all the bad news about the treatment for head and neck cancers. Seems as if they like "breaking it to us gently." We were thinking treatment would end and he'd start healing and bounce back fairly quickly. Seems that's another thing that is just not so. Right now, we live for the weekends so he has a couple days to heal a little before they smack him down again. He's not a happy camper, and I'm having trouble keeping "up" for him.
John is pretty right it does get a little worse right at the end of the treatment, but don’t get despaired about that I took radiation treatment twice. We know it is hard but look at the finish line and not the starting line. If you are in week 4 you only have 3 weeks more to go.
You must keep him focus on something that is how I did it, mark the calendar with his last day of treatment and count it down. I am praying for you both so keep us poster on his progress.
PS: Also welcome to the family here on CSN you found the right place for help
╠╣ONDO0 -
PointerSisterPointerSister said:Time to recover
This is my first post. I am the caregiver for my hubby. We are almost through week 4 of radiation, and it's been very difficult for him. He had a nasty reaction to the initial loading dose of Erbitux and still seems to be feeling the effects of that...nausea, the rash, general malaise. The oncologist was afraid to give him any further doses, but the radiation oncologist broadened the field of radiation to the throat. The farther we get, the more I think the doctors deliberately don't give us all the bad news about the treatment for head and neck cancers. Seems as if they like "breaking it to us gently." We were thinking treatment would end and he'd start healing and bounce back fairly quickly. Seems that's another thing that is just not so. Right now, we live for the weekends so he has a couple days to heal a little before they smack him down again. He's not a happy camper, and I'm having trouble keeping "up" for him.
Welcome to the place for support, information and to vent. So said that you and hubby are struggling so. For your husband to maintain his Positive Mental Attitude those around him must remain upbeat. I know it is hard and I am not trying to be hard on you, my thought is your hubby will look to the number one caregiver (as I did) to see how the daily battles are going. Keep the smile no matter how bad it gets.
I am sure you have seen it said so many times.... reactions to treatment are different for everyone, more of the unknown. We hear at CSN are not doctors so it is hard to say what is best. I can say a large amount had trust in their doctor's and went with what they suggest. I know I did and what he said I did, point being by doing so my PMA stayed up and carried me, my caregiver remained positive and carried me, my Trust in my faith continued and carried me. If your feeling they are hiding things, write the questions down, take them with you and ask them. Point, I listened and did what the doc's asked, that was 15 years 10 months from diagnosis. I doubt they are hiding anything with intention, sometimes they tend to not share as they feel if questions are not asked they understand.
I want to share so nothing is hid from you. Most likely from experience week 5/6 is where the sores and pain become even worse. Most all continue the same for 2-3 weeks post treatments with slow baby step recovery(never fast enough for anyone). I am not saying hubby will get worse, just that a large amount do at this stage.
Believe it will be fine, it will be fine!
John0 -
PointerSisterPointerSister said:Time to recover
This is my first post. I am the caregiver for my hubby. We are almost through week 4 of radiation, and it's been very difficult for him. He had a nasty reaction to the initial loading dose of Erbitux and still seems to be feeling the effects of that...nausea, the rash, general malaise. The oncologist was afraid to give him any further doses, but the radiation oncologist broadened the field of radiation to the throat. The farther we get, the more I think the doctors deliberately don't give us all the bad news about the treatment for head and neck cancers. Seems as if they like "breaking it to us gently." We were thinking treatment would end and he'd start healing and bounce back fairly quickly. Seems that's another thing that is just not so. Right now, we live for the weekends so he has a couple days to heal a little before they smack him down again. He's not a happy camper, and I'm having trouble keeping "up" for him.
sorry somehow it was posted twice
John0 -
John,Skiffin16 said:PointerSister - Recovery
First welcome to the forum.....
Now, the rest of the story...if you have followed along or read up from previous postings here.
Every one is different...
As for the radiation, you basically still are cooking for 3 - 4 weeks post radiation. At four weeks, you are just getting into the worst of it. It doesn't neccesarily get worse than you are dealing with, but it more than likely isn't going to get any better for the next 7 - 8 weeks.
We have a SuperThread on here that offers tons of very good information. I highly suggest you check it out...
SuperThread
Best,
John
I have read many of your posts and you seem to really be doing well, which for me is so encouraging. My husband Steve is now 8 weeks out of treatment (7 weeks external beam radiation, with 3 chemotherapy treatments of Cisplatin) for squamous cell carcinoma cancer of base of tongue, right tonsil cancer that was HPV positive. His primary was found through removing his tonsils and biopsy’s (he found the lump on his neck, which was one lymph node). He had no other signs or symptoms
Treatments were successful for him and he is on the road to recovery. I realize that recovery for this type of cancer and treatment is very slow. Treatments were not a walk in the park for him, however he was healthy and strong at the start to be able to handle the aggressive treatments.
His eating is improving more and more (fish, chicken, pork, some beef, potatoes, noodles, rice, vegetables). Sweets, cakes, muffins, etc. still do not work for him.
How long did it take for these types of food to work for you?
It seems that some food trigger the salty taste or the mucus more than others. How long did the salty and mucus last for you?
His facial hair starting growing back 1 week ago in his front beard area, however other parts have not started to grow back yet (lower part of neck or back of neck). How long did this take to grow back?
He never completely lost all of his hair, it did thin. What he lost was the back of neck, lower head area from the radiation which has not started to grow back yet. How long does this normally take to grow?
I am Steve's biggest cheerleader and encourage him every day and keep telling him how great he is doing. I do have to remind that he is doing so much better this month than the month before and that he just 8 weeks out of treatment. I am the only person that Steve will open up to and totally share his feelings. I have suggested a support group or counseling but he does not want that. I want to keep him positive and to stay focused, but some days he just has a bad day because he wants to be back to "normal" and his old self.
Any suggestions you have would be greatly appreciated.
Thanks,
Debbie0 -
Oh!DrMary said:So much work
I just commented to Doug today as we ate lunch that it still seemed like so much work for him. I hate that he sees eating as a job, especially when it is my wonderful home cooking. However, it's work and not fun.
You can't rush the progress, any more than you can speed up a pendulum or make the earth turn faster. You are doing a great job and so is he.
Oh, but it is so good to eat! (Sorry Greend). I have been able to eat again for a little over a week. Slow yes, but so good. (Limitations with spice but that is not such a big deal) People say that eating slowly is good for us anyway, just think of it as being good for digestion.0 -
Debbie HDebbie H. said:John,
I have read many of your posts and you seem to really be doing well, which for me is so encouraging. My husband Steve is now 8 weeks out of treatment (7 weeks external beam radiation, with 3 chemotherapy treatments of Cisplatin) for squamous cell carcinoma cancer of base of tongue, right tonsil cancer that was HPV positive. His primary was found through removing his tonsils and biopsy’s (he found the lump on his neck, which was one lymph node). He had no other signs or symptoms
Treatments were successful for him and he is on the road to recovery. I realize that recovery for this type of cancer and treatment is very slow. Treatments were not a walk in the park for him, however he was healthy and strong at the start to be able to handle the aggressive treatments.
His eating is improving more and more (fish, chicken, pork, some beef, potatoes, noodles, rice, vegetables). Sweets, cakes, muffins, etc. still do not work for him.
How long did it take for these types of food to work for you?
It seems that some food trigger the salty taste or the mucus more than others. How long did the salty and mucus last for you?
His facial hair starting growing back 1 week ago in his front beard area, however other parts have not started to grow back yet (lower part of neck or back of neck). How long did this take to grow back?
He never completely lost all of his hair, it did thin. What he lost was the back of neck, lower head area from the radiation which has not started to grow back yet. How long does this normally take to grow?
I am Steve's biggest cheerleader and encourage him every day and keep telling him how great he is doing. I do have to remind that he is doing so much better this month than the month before and that he just 8 weeks out of treatment. I am the only person that Steve will open up to and totally share his feelings. I have suggested a support group or counseling but he does not want that. I want to keep him positive and to stay focused, but some days he just has a bad day because he wants to be back to "normal" and his old self.
Any suggestions you have would be greatly appreciated.
Thanks,
Debbie
Hi Debbie, welcome to the forum...
His eating is improving more and more (fish, chicken, pork, some beef, potatoes, noodles, rice, vegetables). Sweets, cakes, muffins, etc. still do not work for him.
How long did it take for these types of food to work for you?
Sweet took the longest for me..., I'm over 2 1/2 years out and have just started to taste ice cream without losing the flavor after a few bites. Most everything else started coming back but it's evoloved over the entire 2 1/2 years for me...
It seems that some food trigger the salty taste or the mucus more than others. How long did the salty and mucus last for you?
I never really had much problems concerning mucous, I believe that is attributed to the Amifostine Injections I had each day before rads... During rads and for a few weeks after, I did have the salty taste..even water tasted like sweat.
His facial hair starting growing back 1 week ago in his front beard area, however other parts have not started to grow back yet (lower part of neck or back of neck). How long did this take to grow back?
He never completely lost all of his hair, it did thin. What he lost was the back of neck, lower head area from the radiation which has not started to grow back yet. How long does this normally take to grow?
Those "other" parts might not ever grow back much due to the radiation. The nape of my neck is still just fuzzy at best, about an inch or so...under me chin, the neck hair hardly grows at all...not such a bad thing as for shaving, LOL...
I can really only offer for him to be patient and if he's lucky, a lot of the thing you mentioned will resolve somewhat.
For me, even at the stages you are now. I thought if it doesn't get any better than this, I'm alive, and can definitely survive like this...much better than the alternative right?
Best,
John0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.8K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 397 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.4K Kidney Cancer
- 671 Leukemia
- 792 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 61 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.5K Prostate Cancer
- 1.2K Rare and Other Cancers
- 539 Sarcoma
- 730 Skin Cancer
- 653 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards