Just curious!!!!

jtl said:

That is tough to comment
That is tough to comment about but unless there are mitigating circumstances it seems like at 7 months he should be further along. I did not have a feeding tube and perhaps that slows down the healing process. I would push for getting excercise, maybe some physical therapy to get things moving in the right direction. That weight seems really low unless he is small in stature. Good that he is excited about the port removal.
John

he's close enough
At nine months out I still had a feeding tube and would use it occasionally. The whole chemo brain forgetfulness thing is normal and has been documented. It happens with radiation also. It does get better down the road. He needs to exercise his mind with anything, crosswords, chess, sudouko??

How much did he weigh at the start. I started at an obese 238lbs. and got down to almost 168. I'm at 185 today almost 2 1/2 years post. I'm still trying to lose weight. If he's getting around 2000 calories per day I wouldn't worry too much as weight is hard to keep off in the long run.

Muscle mass is lost almost completely on the third day of not using it. This is documented in weight training literature. Ask anyone who bench presses weights and is away for several days from their routine. They will all tell you that it takes building up to their workout weight for several days to get back to the point of origin. Again, at some point he needs to start some form of exercise program to tone his muscles.

Lastly consider any medications and then add depression to the mix. Mental attitude is key in beginning the journey back. Do what ever you can to encourage physical activity like walking. Don't get too upset with the chemo brain because it is real for the moment. encourage him to write stuff down. I think he is in the ballpark at least. Just a little more patience.

Husband a little over 4 months out
My husband finished his treatments on August 22nd of this year so he is a little over 4 months out.

1. Weight issues & Feeding Tube - One difference is that he never had a PEG. He bulked up before treatment started but he lost 70lbs during treatment. He is now up 20lbs and is eating everything except spicy food. It took awhile to get to the point where he could eat regular food but once he started he moved along quickly to pizza, burgers, etc.

2. Muscle Mass - He was like this too when he wasn't taking in much nutrition. After he was in the hospital for a week due to kidney issues from the chemo he started to do short walks to help build up his stamina.

3. Unsteady walking - Around the end of October he started noticing some numbness in his hands and feet. Right now it has progressed up to the elbows and knees. The neurologist and Occupational Therapist believe he is on the downward side of this now and will start to see improvements but this really causes him to walk with an unsteady gait. Not sure if this is the same issue your husband is having or not. I hope for your sake it is not neuropathy because it is a truly awful side effect of the chemo. He has trouble typing on the computer, tying his shoes, holding a fork, writing etc. The numbness in his feet make it difficult to walk and he is very sensitive to cold.

4. Cognitive Issues - Yep, probably "chemo brain". Better on some days than others. At times it seems like he zones out. He does go on facebook and twitter a lot which helps a bit. Keeping active also helped but now with the neuropathy that is a bit limited. From what I've read online the "chemo brain" will lessen over time but may never totally go away.

5. Pain Meds - He was never taking too many pain med, even during the treatment. He didn't react really well to any of the narcotics and most of the other pain meds he tried didn't help much. The only thing that he was on long term was gabapentin (neurotin) which is a type of nerve blocker. He had gone off of it but it was prescribed again because of the nueropathy.

As for other remaining issues and side effects, other than the neuropathy he still has a slightly elevated creatinine level (1.9) as well as lingering mucus which is slowly turning to more of a dry mouth issue.

The true turning point for him was actually getting some real food down other than soups, mashed potatoes and scrambled eggs. Every couple of days we would just try something different to see if he could tolerate it. He was truly worried at one point that he would never be able to eat some of his favorite foods again.

Are you still having frequent follow ups with his doctors? Our Radiation Oncologist insisted that we follow up frequently until he was eating consistently. He also helped with trying other pain meds to help the eating process along. We also had his email if we had any questions or problems through out the treatment. He feels that my husband was actually delayed in his recovery due to the kidney issues that he experienced. We now see the ENT every 6 weeks, the MO every 3 months and hopefully if all goes well with the 2nd PET scan in a couple of weeks, the RO will be spaced out a bit more. Of course, these appointments are now replaced with what I will call the "after shock docs" which for us are the kidney doctor and the neurologist.

I hope things start moving along a little quicker for the both of you and you don't experience any other side effects!

7 months out
1. I was 87 pounds, down from 130/135 pounds, depending on the scale.

2. I was pretty much soley dependent on my peg tube. I had one stretching, but could only get down stuff like yogurt. At about 8 months, I was finally prescribed a pump, and started using that overnight, and was gaining about a pound a week.

3. Zero muscle mass. I could barely make it down the driveway to the mailbox and back.

4. I'm always falling over. I have always been that way though. I'm clumsy, and I have always had balance issues.

5. I was still brain dead. I'm better than I was back then. I still have memory issues, and concentration problems, and I'm not as sharp as I was. But I was VERY sharp before. Like, when I was managing, I could carry on three conversations at once, and I would know what every single one of my 10 crew people on the floor were doing, and knew exactly how much product was cooked, and what my team was making on assembly...... Even at the Shoe Dept, I was always doing a minimum of three things at once. Now, I can maybe do one.

6. I was still on either 75 or 50 mcgs of fentanyl at 7 months. My mouth was still really effed up at 7 months. I was at the dentist at about 8 months out, and she thought I just finished radiation because my mouth looked so bad.

jtl said:

Muscle Mass
Are you saying there is no muscle left after 3 days?

Muscle mass diminishes quickly
There is a formula for how fast it diminishes by percentage per day for weightlifting. By the third day of non-use you are almost back to zero. If you are building up the amount of weight you can lift you must keep coming back to that exercise within the 3 day period or progress won't occur. If you can bench press 100lbs on Monday for 10 repetitions and do nothing else until Thursday your repetitions will be less than 10 on Thursday. If the muscles are not asked to do any additional work they don't get stronger, but conversely they also get weaker and start to atrophy. The formula is a weightlifting thing but to variable degrees it applies to muscles which get stronger with use and lose ability with non-use. My first attempt at bench pressing weights after treatment really hit home with me as I found it difficult to lift the bar alone (15lbs), with zero weights, off my chest at about the 1 year mark. Now at 2 1/2 years post treatment, with neck dissection healed, I'm able to bench press 165lbs. It's just so slowly incremental in nature that we don't realize how we lose strength in the same fashion. Sleeping and bedridden and sitting and mal-nourished we are losing muscle strength daily. You must gauge where you are from where you started. It's a day at a time slowwwwwww shuffle back to physical health assuming there are no setbacks along the way.

A tip to him gain weight
Try Benecalorie. It is a bit expensive, but it is loaded with protein. Cancer patients should have a little protein than a well needs . More protein will help the body rebuild the lost muscle mass. I started using Benecalorie for my husband when his weight dropped dramactically , he has now gained 20 lbs and feels stronger. My hubby still has a feeding tube. The Benecalorie is tasteless and ordorless and mixes easily with all soft foods. It provide the patient with and added 330 calories per serving plus 7 g of protein . I use it will all three meals ....so I think it is well worth the $36.99 for 24 cartons.

Will keep you in our thoughts.

PS...laughter is the best medicine. Laughter, good friends, light tv sitcoms and few good jokes helped my husband tremendously...and me as well.

jim and i said:

balance
arndog,

Jim is 4 months out. At three months he was having the same side effects, mental confusion, memory, balance, weak and shuffling when he walked. The PC doc said he needed to excercise, the ENT said he was early in recovery and to exercise. But when I told the Rad doctor he ordered a ct of the brain. Result, to our relief, showed no cancer or lesions on the brain but Hydrosephlus (fluid on the brain). The doctor sent to a neurologist who said he might have normal hydrocephlus and ordered a test. They drained 40 cc of spinal fluid through a lumbar puncture and sent him home. The next day he walked without shuffling or stmbling, was alert and able to remember things and slept better than he had in 6 months. After 2 days he slowly got weaker, confused and slept off and on all day. This meant that he did have fluid on the brain. They will be putting a stint in his brain to drain the excess fluid regularly because the drainage in the brain is clogged. I am not saying this is your husbands problem but you might ask about it. Also, the pain meds can cause memory loss and chemo brain is a real problem.

Jim still can't eat due to taste so relies on the peg. He has gained about 10 lbs, all around the middle but I attribute that to the formula which has a lot of sugar and artificial stuff in it. I don't know if he is on a formula like Jevity with a pump but this is what Jim has been on. He has cut back to 1800 calories because he is never hungry with the 2000 and still gaining weight, all be it slowly. Jim also has the added aversion to food because he has either thrown up food or gotten things stuck in his throat so he is hesitant to try things other than thin liquids.

I pray your husband is just a slow recoverer like mine. Take care and be sure to express your concerns to the doctors.

Debbie

arndog is doing great all things considered
I think Arn is doing well all things considered. He had a few more complications than I did, but at 7 months, I had most of the issues you mention--even chemo brain and I didn't even have chemo....as others have said, he needs more calories, more protein and a little bit of exercise to make the leg muscles stronger. I, like Dawn (sweetblood) could barely walk to the mailbox just this last January, but we would try to get out once a day and i would go to grocery or walmart--take a shopping cart so I could hold onto something and just walk the aisles...a little bit further every time, and soon I could tell my legs were getting stronger. It was sort of like using a walker for support, but not. Now that the weather is getting nicer, you can walk outside a bit...maybe just two houses down and back. (or if you're concerned about balance--use the grocery shopping trick--it really did help me)

There were days that I could not get out of bed at 7 or 8 months out. I blamed that mostly on the opiates. At 7 months, I was still on hydrocodone every 6 hours. Started taking gebapentin for the nerve damage at about 8 mos out and cut back a lot on the pain meds.

I know you have been in touch with his docs...I know you had the run around recently with the fever business. Not sure if you are/have found a different ENT or Onc Doc, but I would tell them all of your concerns. At every check up I would tell mine, and the answer was always the same, "You're doing great--just give it more time".

Today, I am 12 months out from last rad session and 15 months from surgery and I feel better than I ever thought I could. not perfect. not what I was before, but pretty dang good considering. I think Arn was a little behind me in treatment, so I pray that he will also get to where I am and that he does it soon.