How Long To Bounce Back

BonnyKay

Hey there, everyone ...

So my husband has NPC ... had the concurrent radiation/cistplatin with his last radiation on September 7th. Then about a month later he started the three treatments of cistplatin/5FU ... with the last one being changed to carboplatin/5FU. He finished the last treatment the week before Thanksgiving.

So my question is ... this last round of chemo has really done a number on him. He's tired and weak and can't concentrate. A good part of that may be the anemia ... about a month ago he got down to 8.4 and the doctor suggested he have a blood transfusion. That kept him up for several weeks but he's now back down to 8.4 and is really struggling.

The doctors are suggesting another blood transfusion but he's resisting. He says he doesn't feel like it helped him that much last time (I, on the other hand, think it made a world of difference but he doesn't see that) ... and he didn't like the way it made him feel. He opted to try taking high dosages of iron pills ... but it's been about a week with no improvement in his symptoms (weakness, fatigue, low blood pressure, etc.)

He has his first follow up scan on January 11th ... then we meet with the oncologist the week after that for the results. He's anxious and panicky ... he's angry because he still feels so bad ... he's despondant because he couldn't enjoy Christmas ...

... so my question to you all is this ...

If any of you or your loved ones went through this cistplatin/5FU treatment, how long did it take before you started feeling ... "normal." How long before you felt like going to a movie? How long before you actually felt a hint of "good"?

I'm going to talk to the doctor about local support groups ... because all he has is me and he's sick of me saying, "It WILL get better ..." ... I think he needs to hear from people who have gone through this.

But in the meantime, while I look for local support groups ... any words of wisdom or hope from anyone?

Hope you all had a very Merry Christmas ... and a Happy New Year too!

Hondo

Hi Kay
I finish treatment for NPC about 4 ½ years ago so I know what your husband is going through. To began, Normal for him will change from what you know as Normal, we call it our New Normal and it is different for everyone. As far as how long before he starts feeling better depends on how fast his body is healing from the effects of the treatment, that can be as short as 2 months or as long as a year.

The thing to understand is that the treatment is over on the outside but not on the inside, one the inside there is still a lot going on left over for the treatment.
He will be weak, tired, cold and probably miserable all at the same time. Something you need to check him for is dehydration as he needs to get a lot of water in his body.

All the best to you both
Hondo

ratface

Hondo said:

Hi Kay
I finish treatment for NPC about 4 ½ years ago so I know what your husband is going through. To began, Normal for him will change from what you know as Normal, we call it our New Normal and it is different for everyone. As far as how long before he starts feeling better depends on how fast his body is healing from the effects of the treatment, that can be as short as 2 months or as long as a year.

The thing to understand is that the treatment is over on the outside but not on the inside, one the inside there is still a lot going on left over for the treatment.
He will be weak, tired, cold and probably miserable all at the same time. Something you need to check him for is dehydration as he needs to get a lot of water in his body.

All the best to you both
Hondo

About the 9 month mark for me
Hi Bonnny

You will certainly get a wide spectrum of answers as we all heal differently. I think we all go out and buy a bottle of iron pills though. It was around the nine month mark, post diagnosis, which coincided with my PEG removal. A lot of what you describe is normal, the fatigue and memory loss and feeling just crappy and a little depressed. The transfusion may be more effective this time around now that the chemo poison is out. Two thoughts for you, if you can change that appointment on the 12th to the next day if possible to alleviate the anxiety of waiting a week. Second here is the contact information for a nationwide organization that sponsors group meetings for head and neck cancer:

"Suuport for people with head and neck cancer" SPOHNC info@spohnc.org 1-800-377-0928.

or, Tell me what state your in and I can provide more info for you.

MarineE5

Fatigue
Hi BonnyKay,

Just to add on to what Hondo and Ratface mentioned. I did not have the Chemo, but the radiation does take a toll on us. Another thing you may want to be looking at is the Thyroid as it is usually in the field of fire of the radiation. Depending on the number of RAD's each of us receive, the Thyroid my not function as it did before. I was warned of this right away by my Radiation Oncologist.

I was lucky to a point as my Thyroid did not start to fail until recently and I have been put on medication to help boost my energy level once again. Some people have problems with their thyroid right away. Keep an eye on the TSH levels of the thyroid.

My Best to Both of You and Everyone Here

DrMary

MarineE5 said:

Fatigue
Hi BonnyKay,

Just to add on to what Hondo and Ratface mentioned. I did not have the Chemo, but the radiation does take a toll on us. Another thing you may want to be looking at is the Thyroid as it is usually in the field of fire of the radiation. Depending on the number of RAD's each of us receive, the Thyroid my not function as it did before. I was warned of this right away by my Radiation Oncologist.

I was lucky to a point as my Thyroid did not start to fail until recently and I have been put on medication to help boost my energy level once again. Some people have problems with their thyroid right away. Keep an eye on the TSH levels of the thyroid.

My Best to Both of You and Everyone Here

Dehydration, iron and nutrition
First, Hondo is dead on - dehydration can cause a lot of fatigue. He can be dehydrated even if he is drinking all the time. Our docs were able to order outpatient IVs - you can go daily or every other day and get a liter of saline in about 2 hours. It makes a big difference in blood pressure, which affects how well the oxygen gets transmitted.

Your husband is correct in thinking iron supplements will also help with oxygenation of his blood (and therefore, energy) but he needs to remember that his body is not absorbing nutrients "normally" these days. Big slugs of iron in pills might just go right through him.

This brings us to nutrition - it is much better to get those nutrients in food (or in food-like supplements, such as Ensure or Boost, if necessary). It might help him to get involved in this project - the best thing is to use a calorie counting program that also tracks nutrients (free online for most - we use caloriecount from about.com but others are at least as good) but you can also do it with an excel spreadsheet (I did this for a few weeks).

Shoot for the minimum requirements of most nutrients (including iron) plus 150-200% of calcium, phosphate, potassium and magnesium as these are most needed for tissue regeneration. Extra B-6 and B-12 are never a bad idea. Shoot for at least 2000 calories per day and find out (most have a program for this) how many he should be eating to gain 1-2 lbs per week. If it turns out his calorie intake is currently low, set your daily goal 100 - 200 calories higher per day until you hit the goal. (BTW - I really hate supplements - we are normally the natural, organic, free-range food types. However, at this point, get the calories and nutrients in ANY WAY YOU CAN!)

Indeed, some of his weakness might just be that he has not yet recovered; he has just put his body through hell - however, it can really help to think you have a plan for the next month or so. We are all used to feeling better a week or so after an illness, so a long recovery is tough to understand. Sometimes a "fool proof" road map helps, even if it is just for reassurance. Tell your husband that my husband went from not being able to move (almost) to working out at the gym (gently) eventually by following this slow-but-sure plan, and he's better every day now. Sometimes you just have to have a little faith in the process.

Noellesmom

anemia
Wicked to have anemia AND be recovering from radiation/chemo.

One things to remember about anemia and iron supplements - the only way for an anemic to actually benefit from iron supplements is via iron infusions, usually given by the doctor who orders the transfusion.

The infusions do a lot but I agree that time, proper nutrition, LOTS of rest, moderate exercise are all important to recovery and regaining strength.

Noellesmom

anemia
Wicked to have anemia AND be recovering from radiation/chemo.

One thing to remember about anemia and iron supplements - the only way for an anemic to actually benefit from iron supplements is via iron infusions, usually given by the doctor who orders the transfusion. After the iron and blood levels return to normal, oral supplements can be used effectively for maintenance.

The infusions do a lot but I agree that time, proper nutrition, LOTS of rest, moderate exercise are all important to recovery and regaining strength.

stevenl

Noellesmom said:

anemia
Wicked to have anemia AND be recovering from radiation/chemo.

One thing to remember about anemia and iron supplements - the only way for an anemic to actually benefit from iron supplements is via iron infusions, usually given by the doctor who orders the transfusion. After the iron and blood levels return to normal, oral supplements can be used effectively for maintenance.

The infusions do a lot but I agree that time, proper nutrition, LOTS of rest, moderate exercise are all important to recovery and regaining strength.

Normal
Bonnie,

I finished treatment in April, Cisplatin and 5FU and I am doing real well now. It took me about 3 months to feel anything like normal. Sorry might not be very encouraging but everyone is different. The 1st 3 or 4 weeks are the worst really. But I did not have any problems like he is having with anemia. But the last chemo put me in the hospital. Nausea grabbed me and would not let go. They just pumped fluids in me and gave me stronger anti nausea meds.

Hoping for the best for both of you,
Steve