anemic, lethargic and cooooold!

jml · 02-02-2010, 11:12 AM

Hi Friends~
What to do?
I'm typically a little anemic, but the past few weeks I've been a little more so & hemoglobin running ~8.8.
I'm tired & lethargic and cold all the time, light headed when I stand up and, short of breath walking up a flight of steps to my condo or carrying groceries or a heavy bag, and muscles burn like I'm hiking Mt. Everest

I talked to the Rn, but she said that even though my levels are low, I'm not critical. And since I'm not on active chemo (Herceptin+Tykerb only since November), I'm not a candidate for Procrit or Aranesp. She said they typically don't treat til the Hgb is 8 or below. Ugh! I can't even imagine!
I'm frustrated & discouraged because I'm so tired of being TIRED! I've forgotten what it feels like to have the energy to do more than one thing a day. I don't know when the last time was that I actually walked my dog, rather than sending just him out on his own to go to the bathroom! I'm a Pilates instructor and own my studio, but just end up sitting down through the class/lesson, talking through the exercises. And then I go home and lie down for hours.

All other labs are normal, thank goodness and the best news of all is that my CTC is ZERO

This is especially encouraging since failing 5 mos of Tykerb + Xeloda and finding 2 new spots in my liver and disease in the nodes in my belly, compressing my colon & kidneys. we immediately switched back to Herceptin + Tykerb and crossed our fingers!
When we drew the labs my NP said not to be nervous or concerned if the levels came back elevated, since we knew the scans showed new disease. So after 9 weeks on Herceptin + Tykerb, looks like things are working. Phewwww!

I always say that these SE's are worth it, so long as the drugs are working, but I'm starting to feel a little depressed by how sluggish I am. I have scans on 2/16, hoping for more good news, and maybe even a little Tykerb break, but don't know how I'm gonna drag myself through 2 more weeks.

I feel a little petty even broaching this issue, especially since we've experienced too much sadness & loss of our family of friends here in these past few weeks and months.
But I feel optimistic about the combo of Herceptin + Tykerb, and hope that the CTC results are a good indicator of how effective this combo will be for all of us.
Keeping us all in prayers and always Keeping the Faith~

Jessica

WolverineFan · 02-02-2010, 11:26 AM

Jessica,

Please don't feel petty at all. This is exactly what this board is for...support....no matter what you are feeling. I know how you feel about being sluggish and how frustrating that is. I had two blood transfusions while getting active chemo bec/ my counts were low. Would that be a consideration? My onc told me my hemoblogin had to be below 8.5, so you are getting close. I was at 8.2 and 8.3 when I had mine, but I felt like a new person after both of mine. I was really nervous about it, but had no problems tolerating it and felt completely energized after getting them. So, you may talk to your onc if that would be a consideration to help you. I hope you get to feeling better soon.

Hayley

ElaineM · 02-02-2010, 12:02 PM

I am sorry you are a little under the weather. Do you feel well enough to eat well? Eat foods that are full of iron like liver, beans (Lentils are packed with iron), black strap molasses and some veggies like dark green leafy ones. Even blackberries have a fair amount of iron. I get the frozen ones when the fresh ones are not available. If you want to consider an iron supplement the liquid form is better than the pills. The pills can cause constipation and who needs that?
I hope you feel better. Good luck with your tests.

Darlene Denise · 02-02-2010, 12:05 PM

Hi: I did Xeloda/Tykerb and then Xeloda/Tykerb/Herceptin. I had the same complaints as you when on the Tykerb. Maybe a dose adjustment is something to consider. How much Tykerb are you taking? 1000 mg is what is given in combo with Herceptin. 750 mg was a lot easier for me to tolerate.

I also had to stop a few days here and there and the relief and renewal was pretty immediate.

It was a tough combo for me and I fought hard to stay on it, but had to abandon it.

I hope you can personalize your dose so you can get back to being more like your old self.

Well wishes...Darlene

Jackie07 · 02-02-2010, 04:21 PM

Are you allowed to take iron supplement? Whenever I was anemic, my doctor would told me to take iron pills. During chemo, I had had several shots to boost both the white blood cell count and the red blood cell count. I think that you need to ask them if you can take iron supplement by yourself while undergoing treatment.

Lien · 02-03-2010, 01:13 AM

Another natural source of iron is apricot. As iron pills can cause constipation, be sure to take care of that when you start taking them.

Hope you feel better very, very soon. I had anemia during both my pregnancies and I just couldn't get up from the couch. I hated it.

Love

Jacqueline

kk1 · 02-03-2010, 08:41 AM

Hi Jessica;

Are you taking any B6 supplements while on tykerb? It helps with the dry/cracked skin nose and helps prevent anemia. My onc has me on 200mg daily while on tykerb. It seemed to help the fatigue. Keeping my fingers crossed about your scans next week. take care

schoolteacher · 02-03-2010, 01:31 PM

Jessica,

Hope you are feeling better today. Glad your test results are improving.

Amelia

Becky · 02-03-2010, 03:33 PM

Whoever said apricots is right and the dried ones work just fine. Also, insure that you are also eating adqueate amounts of protein. Eggs are good as the yolks also have iron in them and the whites are pure protein. Alot of times, we watch the meat intake and really might not be getting enough.

Take a multivitamin at least as it has the right ratios of the B vitamins (you might have a B12 deficiency which your onc can test for). If so, all the iron in the world won't help you but your hemoglobin is down so it is probably due to iron (one would think).

Also, when eating the iron rich foods (or taking supplements) drink orange juice as the acid and vitamin C assist iron absorption. Also, do not take calcium or calcium rich foods for several hours before or after the iron rich foods (or supplements). The body will preferentially absorb calcium over iron if they are present together.

Rest, rest, rest.

Huge hug to you

jml · 02-03-2010, 07:27 PM

Thanks everyone for the suggestions & advice.
My doc wants to do another set of labs to check iron levels and such before we consider shots/transfusion.
I'm sure a Tykerb dose reduction would help, but I really don't want to do that since scans are only 2 weeks away & I want to sprint to the finish!
So in the meantime, I'll try to get as much iron as I can via foods vs. supplements as I just don't want to risk constipation.I had some major problems with that issue before when the nodes in my belly were pressing on my bowels & causing some serious back up. Fortunately, the Tykerb/Herceptin seems to have shrunk the nodes, so things have gotten better. But now there's the opposite Tykerb issue that I'm currently struggling with.Ugh!
I'll be totally honest with you guys - I really wish they would just give me a shot or a transfusion, because between getting a head-rush from jumping up to run to the bathroom, being short of breath by the time I get there, dealing with the GI issues, then having to lie down under a pile of blankets because I'm freezing & exhausted from the entire episode, it's all really getting on my nerves!
I guess you just have to find the humor in it all...

Keeping the Faith, though sometimes it's hard!

Jessica

'lizbeth · 02-03-2010, 08:16 PM

Thinking of you Jessica while you deal with all these health issues. Not all anemia is iron deficent, but make sure you get all the B vitamins. An old midwife trick was to use liquid chlorophyll to help build the blood up after childbirth. It has a similar structure to the pyrole ring, except doesn't have the iron molecules.

Aranesp would likely make a big difference. My husband is anemic and has to have a shot every 2 weeks.

I hope you and your doctors figure out what the problem is and get you back to good health quick!

ElaineM · 02-04-2010, 12:00 PM

Don't forget raisins. Also if you are not allergic to iodine sprinkling a little nori, wakame or hijiki (seaweeds) into your food might help. A little white sesame might add to the iron too.
Wow !! Everyone had great suggestions. We should keep this post somewhere as a general guide for people struggling with this issue during chemo.

StephN · 02-04-2010, 12:47 PM

Sorry that your winter is wearing you out!

It has been colder than normal in the south. Do you have a heating pad to plug in and snuggle with? I sure use one here to warm up the bed if I am going to be the first one in it. That warming pad was my "best friend" while I was in active treatment and anemic!

I did eat a lot of lentils in various preparations plus dice up some dried apricots to put on cereal or salads. I know you don't want too much fiber, so I hope lentils will not add to your problem.

Wear some warm socks day and night. My feet are nose are always cold!

I know you will "sprint to the finish" to scan time. Very happy to hear that your nodes are not bothering your innards like before the holidays.

Laurel · 02-04-2010, 04:12 PM

Jessica,

I have found a quality B-Complex supplement that is low on the folic acid as there is a correlation between folic above 200meq and cancer to be very helpful in bumping up blood counts. They put folic acid in everything these days so it is easy to get too much. Hard to find a supplement with a low folic acid, but in the short run it probably will not hurt. Also, you can make your own complex by purchasing the b-vits individually.

What you are feeling is just no fun. Hang in there. Hoping the supplements will beef you up!

msleslie · 10-15-2010, 08:34 PM

I'm in the same boat here - hemoglobin is 8.7 it has steadily decreased after each treatment. I'm scheduled for chemo#4 on 10/21/2010 but not sure that it will be allowed. I may have to get a blood transfusion but will have to wait to see what is determined when I have my next lab work on 10/21/2010. So for now, I'm easily exhausted and constantly cold. This is so frustrating - I felt so much better before learning I have cancer & starting treatment.

Lien · 10-17-2010, 12:48 PM

I keep thinking that perhaps it's not just anemia. My Hb has been around 8 all my life. When I was pregnant it got even lower: down to 6.2. But I started to feel better when it came back up to 7 or so. Could it be that there are other contributing factors causing your fatigue? I hope you find that increasing your iron levels helps. The apricots were recommended to me by my doctor and they work really well. If you can find organic chicken liver, that would be a good source too. If you don't like the taste of it, you can mix it in a meatloaf.

Hope you start feeling better soon.

Jacqueline

Elizabethtx · 10-31-2010, 09:33 AM

During chemo my Hgb levels went down to 8.5. I was tired and cold (still am!) all the time. My onco gave me Tandem which is an iron supplement and it took about a month, but did help with the Hgb levels. Once I finished the chemo in August I continued with the Tandem and now my levels are 10.5 again! I will continue to take it until I see her in December. It really helped and was simple to do. Of course, it will make you constipated, so get plenty of fiber.

msleslie · 10-31-2010, 03:17 PM

I received a blood transfusion this week. My hemoglobin went from 8.6 to 10.3 so my energy level has drastically increased. It was definitely the right decision for me.

Sandra in GA · 10-31-2010, 03:55 PM

I am so glad you are feeling better Leslie. Transfusions were right for me too. I got two units of packed red cells when my hgb went to 9. I had rapid heart rate, exhaustion, nausea, coldness, and generally felt like heck. They don't usually give blood until the hgb reaches 8, but I had severe symptoms of anemia because my normal hgb was 14. At the start of my transfusions my pulse rate was 116. At the finish, it was down to 76. My hgb rose to 12.1. That was my first blood transfusion, but I would not hesitate to have one again if I ever need one.
Sandra

healthforever · 04-22-2011, 06:28 AM

Why in the world would you feel petty? Everyone faces problems sometime or the other, n im sure you’ll come out of this beautifully. You will surely be in all of our prayers. For a good dose of iron try having Jobelyn herbal supplements. Also eat loads of meat, figs n dates….always helps. Get well soon….