Fatigue

nowonderwoman

Hi

I have not posted in a long time.

The last time I had a chemo treatment was in late Feb 2009. I had been on several regimens since Feb 2007 when I was diagnosed. My last regimen was irinotecan and xeloda from Nov 2008 until I stopped in Feb 2009. Avastin was also supposed to be included but I kept having severe bleeding. I had a vaginal ablation in early Dec 2008 that did not help. I had a total abdominal hysterectomy in early Feb 2009. By that time I had decided to stop the irinotecan. I just could not tolerate it anymore. I made me hurt all over and I had severe constipation. (I have never been prone to constipation and irinotecan is known for severe diarrhea.)

My PET scan in late Feb 2009 showed that the four lesions that showed up in my Oct 2008 PET had doubled in size and there were also four more lesions totaling to eight in my liver. There were also lymph nodes near my pancreas and a spot at the T-11 level of my spine that were concerning for met of the disease.

Anyway, my oncologist did not have anything else to offer me and so I decided to start looking into alternative methods. My trouble is I have severe fatigue. I thought after I was off the chemo for a while I would start to feel like my pre diagnosis days. I have no energy at all. I have never had any trouble with eating during this time and have gained weight since starting chemo.

Is there anyone out there who may have any suggestions for me regarding the fatigue and further treatments. Please help if you can. I am so tired of living my life in bed or on the couch.

Thank you

rrob

Fatigue
I'm sorry that you are having so much trouble. As far as the fatigue, I finished chemo in June 2008 and was extremely fatigued for the first several months. One thing that helped me was resting when I was tired, but trying to push myself to get a little more exercise every day. Some days it was only a short walk and then I would fall asleep on the couch that evening, but just like anything else, you have to build your strength back up. As far as any further treatments, have you checked with any other oncologists or major cancer centers? When I was volunteering, one of the patients had been turned down for further surgery because he had a lesion in his lung and one in his pelvic area. He went to Houston to M.D. Anderson and they did surgery on his lung. I think I would try for a 2nd, 3rd, or 4th opinion. Many people on the board have done just that and been given options that their first oncologist didn't offer. Good luck!

Rebecca

kmygil

# 1 Chemo Culprit!
Hi. I'm so sorry for everything you have gone through and are going through. For sure fatigue is the #1 reported side effect of cancer treatment. After chemo, you will remain very fatigued for some months. You can cut down on that time by exercising, like Rebecca said. The more you do the more your stamina will increase. However, I don't know if you will ever get back to the stamina levels you had before treatment. Yet, we learn to live with "the new normal" and fight the effects every way we can. The basics are good nutrition, good hydration and exercise. No different from any other diet (snicker, snicker--like I practice what I preach!) Anyway, things should get better, but you can accelerate the good times by doing those things.

Hugs,
Kirsten

dmdwins

kmygil said:

# 1 Chemo Culprit!
Hi. I'm so sorry for everything you have gone through and are going through. For sure fatigue is the #1 reported side effect of cancer treatment. After chemo, you will remain very fatigued for some months. You can cut down on that time by exercising, like Rebecca said. The more you do the more your stamina will increase. However, I don't know if you will ever get back to the stamina levels you had before treatment. Yet, we learn to live with "the new normal" and fight the effects every way we can. The basics are good nutrition, good hydration and exercise. No different from any other diet (snicker, snicker--like I practice what I preach!) Anyway, things should get better, but you can accelerate the good times by doing those things.

Hugs,
Kirsten

Hang in there
It looks like from your post that it has only been 3 months since your last chemo.Fatigue is the biggest side effect.It takes time for us to recoup from the damage to our good cells from all the chemo. Try to do a little more each day and don't be too hard on yourself. It usually does get better, but as Kirsten said you might have to have a "new normal".

Also, were you treated at a major cancer center? Have you thought about getting another opinion? Many on this site have found other options when their original onc said he had none.I know it is hard to even think about it when you feel so tired all the time but is worth the try.
Hang in there.My thoughts and prayers are with you.

Dawn

kimby

Treatments & Fatigue
I have to agree with everyone else: rest and exercise. Sigh. Some days I can only walk to the mailbox and back or swim for 10 minutes. I do it anyway. I don't have to nap everyday but still on most days. I spend way more time on the couch than I'd prefer and have learned how to keep myself entertained. If there is something I really want to do that will tire me, I plan an early night the day before and then stay home the next day and rest. I don't know how long all this will last but for now it's all I can do.

I have also progressed on the available chemo cocktails. What did a radiation onc or a surgical onc say? Do you have a 'team' of onc working on your case together? A medical oncologist can advise you on chemo options but not all the other treatments available. I completed 5 weeks of liver radiation a couple months ago, have a PET/CT scan next week before I start radiation to the lymph nodes. When that is complete we'll go back for more liver treatments. Only a good oncology team can decide with you what treatments are best for you but there are so many that might be: radiation, RFA, HAI pump, cyberknife, gammaknife, therasperes, sirt spheres...and many others. Get as many opinions as possible but not just from medical oncologists.

Here is a good place to start looking for a good facility. These are all NCI Comprehensive canzer Centers.

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html

Good luck,

Kimby

nowonderwoman

kimby said:

Treatments & Fatigue
I have to agree with everyone else: rest and exercise. Sigh. Some days I can only walk to the mailbox and back or swim for 10 minutes. I do it anyway. I don't have to nap everyday but still on most days. I spend way more time on the couch than I'd prefer and have learned how to keep myself entertained. If there is something I really want to do that will tire me, I plan an early night the day before and then stay home the next day and rest. I don't know how long all this will last but for now it's all I can do.

I have also progressed on the available chemo cocktails. What did a radiation onc or a surgical onc say? Do you have a 'team' of onc working on your case together? A medical oncologist can advise you on chemo options but not all the other treatments available. I completed 5 weeks of liver radiation a couple months ago, have a PET/CT scan next week before I start radiation to the lymph nodes. When that is complete we'll go back for more liver treatments. Only a good oncology team can decide with you what treatments are best for you but there are so many that might be: radiation, RFA, HAI pump, cyberknife, gammaknife, therasperes, sirt spheres...and many others. Get as many opinions as possible but not just from medical oncologists.

Here is a good place to start looking for a good facility. These are all NCI Comprehensive canzer Centers.

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html

Good luck,

Kimby

Thank you so much. I will
Thank you so much. I will look into that website.

kdrial

dmdwins said:

Hang in there
It looks like from your post that it has only been 3 months since your last chemo.Fatigue is the biggest side effect.It takes time for us to recoup from the damage to our good cells from all the chemo. Try to do a little more each day and don't be too hard on yourself. It usually does get better, but as Kirsten said you might have to have a "new normal".

Also, were you treated at a major cancer center? Have you thought about getting another opinion? Many on this site have found other options when their original onc said he had none.I know it is hard to even think about it when you feel so tired all the time but is worth the try.
Hang in there.My thoughts and prayers are with you.

Dawn

I am so glad it is not just
I am so glad it is not just me. I finished Chemo in February, but had to have stents placed due to Hydronephrosis. Sidebar, that hurt worse than having my rectum removed. It still hurts after 3 months. I started regaining my strength, and then it was like BAM, all strength gone again. I do cook everyday and bake almost every day, but it takes me all day long just to do this. I feel like Jimmy Stewart in Rear Window,except I spend most days and evenings in my bed.

ldot123

nowonderwoman said:

Thank you so much. I will
Thank you so much. I will look into that website.

Biggest complaint
I still have some days where I feel quite fatigued and that is 2 years out of treatment. It is getting better mind you and everyone one is different in terms of how they bounce back. Believe it or not, walking is good way to take the edge off of fatigue.

Cheers, Lance

Buzzard

ldot123 said:

Biggest complaint
I still have some days where I feel quite fatigued and that is 2 years out of treatment. It is getting better mind you and everyone one is different in terms of how they bounce back. Believe it or not, walking is good way to take the edge off of fatigue.

Cheers, Lance

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