Why was I stronger DURING treatment than I am now?
Comments
-
pretty sure it is on the known list of side effects.
0 -
Timbuktu, everyone I've seen for my cancer -- rad onc and med onc and their NPs, and the surgical NP, are women. The only man on my team was the surgeon. And to be honest, I think he was the nicest one in the bunch!
I just spent a couple of hours looking at medical journal abstracts about post-treatment fatigue. It's really difficult for me to believe that I'm the only woman in a major university cancer center that has ever complained about it. Instead of feeling happy about NED, I'm angry about being dissed! Of course, being so tired after dinner that I went and slept in the car while my husband finished his beer probably didn't help my mood. At least today I had a reason to be exhausted. :-/
0 -
Exactly. My mood is just fine when I'm not fatigued.
The problem, from what I've read, is that even though there appears to be a connection with cytokine levels, or the HPA axis, or changes to the immune system, or even epigenetic changes, the mechanisms are not well understood, and there are no treatments based on the underlying physiology. But once possible related factors (depression, sleep issues, thyroid, anemia, etc) are corrected or ruled out, and the patient is exercising and eating well and sleeping well and still fatigued, then who do you see to determine what is the best pharmaceutical intervention? I had to ask my PCP for ritalin, she refused to prescribe modafinil, I'll be back to her soon to talk about wellbutrin even though lexapro did nothing and it took me 6 weeks to detox from it. It would be great if there were a specialist that I could see who was up on the latest research and could help design a reasonable therapy without the skepticism and condescension that the oncologists dish out.
Here are some quotes from my evening's research:
Fatigue is the most common, persistent side effect
of cancer treatment, reported by about one-third of cancer survivors,
particularly among those treated with chemotherapy. (American Cancer
Society's publication "Cancer Treatment & Survivorship Facts &
Figures 2014-2015 ")The majority of
reports estimate that approximately one-third of survivors experience fatigue.
The growing number of survivors makes this an important area of scientific
development. Fatigue is often unrecognized and undertreated by health care
professionals, in part because of a lack of knowledge of mechanism-targeted
interventions. (European-American Dialogues on Cancer
Survivorship: Current Perspectives and Emerging Issues; Cancer-related fatigue and its impact on functioning)The authors conclude that there is good evidence of
PTF (post treatment fatigue) occurring up to 5 years after completion of
adjuvant therapy (for breast cancer). (Breast Cancer Research and Treatment: How common is fatigue in disease-free breast cancer survivors? A systematic review of the literature)Experienced by most patients as an extremely
frustrating state of chronic energy depletion, it leads to loss of productivity
which can reduce self-esteem. As a subtle and chronic symptom, it also places
people at risk for being questioned about the veracity of their complaints,
particularly during the post-treatment, disease-free survival period. Patients
themselves are reluctant to complain of fatigue, perhaps because they believe
little can be done about it, or they wish to avoid drawing attention away from
treating their cancer. (Oncology: Progress toward guidelines for the management of fatigue.)0 -
Yeah, I avoid taking ritalin every day because it does increase anxiety. I hardly took it at all last spring because I was having a lot of issues with anxiety at the time. Now that I have that under control, I'm doing more ritalin. Someone recommended the herb "holy basil" for anxiety, and I take that twice a day now, and I'll be darned it does seem to help!
Chemo increased my odds of surviving breast cancer by 6%, but came with a 3% possibility of developing leukemia from the chemo, so my total increase in likelihood of survival is 3% (plus more from surgery, radiation, letrozole). I think I would have done the same even if I knew that I would never work full time again, but it's hard to say. At least I could have been prepared for it mentally and emotionally, instead of spending years wondering WTF is wrong with me, struggling to sit at my desk for even half a day. Nobody warned me that my "new normal" might include the end of my career.
0 -
Why was you chance of leukemia so high? I've been told it's1%. It is weird talking percentages when it comes to your life. I had chemo for a 3 % advantage. Several drs told me not to do it but this one dr said that if I am one of the 3% that's a lot. I think so much has to do with personality. I'm not a risk taker and felt i had to DO whatever I could. Of course there are risks either way and there's the rub.
0 -
Don't know why the leukemia risk was 3%...she just said that number and didn't qualify it one way or another. Maybe it's different for different treatments/doses? I was on taxotere & cytoxan.
0 -
In my case, I was told the leukemia risk was from the Cytoxin. The only reason I went with chemo was because of big cancer in three nodes. My Oncotype score, which was developed for node-negative people, was 13. I am tired and sometimes sad. I have found a good therapist who, hopefully, will help me process all the sh$t I've been through the last two and a half years. I exercise but just don't have the stamina I think I should.
0 -
Gosh, I didn't know that you can't have chemo twice! That IS frightening, especially since I've had two chemos. Why didn't they tell me? All they did was try to talk me out of it. Yikes!
I've been dizzy lately and it really scares me. Tired and dizzy. So many SE's, how will I know if there is a recurrence? Not that there's much to do if there is...
Hard to put it out of your mind when there's pain and dizziness and weakness so it's hard to DO anything.
But I'll push on today. I actually did clean my kitchen! Maybe the improvements are so small I don't notice them as I should. I could not have cleaned the kitchen a couple of weeks ago....
0 -
Timbuktu, are you having the exact same chemo? I think that is the issue although I have seen people have Cytoxin twice. I am glad you recognize small improvements. You have been/are going through so much! Be kind to yourself. Your body is working hard to keep you well.
0 -
Hi All,
Are we all at risk for developing Leukemia if we had chemo? I never heard that before.
0 -
I had CMF for the breast cancer and Taxol/Carboplatin for the uterine cancer. I guess there are so many reasons we can feel what we're feeling, it's so hard to sort it out. The dizziness is new. Lack of balance. I'm taking so many pills and vitamins maybe I'll cut back for awhile and see what happens. Wishing good health to all of us!
0 -
I did wonder about neuropathy of the brain, but this dizziness seems to have come after the treatment.
I may just be taking my other meds at off times. I have high blood pressure, diabetes, etc.
Actually I can really feel the improvement today. Its absolutely beautiful out and I took my two grandchildren to the park. I sat and watched them play but I can remember when even that was asking too much. Of course I did leave my husband there so I could take a break right now. But I don't feel the way I did.
Maybe the trick is to get your mind off of yourself as much as possible. The more I think about all of the aches and pains and dangers, the worse they seem. But it takes some energy to distract yourself.
0 -
I, too still experience fatigue after finishing my chemo in March 2012. I have adjusted my schedule to accommodate the fatigue. But I am lucky that I retired right before I was diagnosed. I can't imagine doing a full day's work now! And, because I am triple negative I'm not even taking an anti-hormonal drug!
My female onc says it is normal to still experience some fatigue at this point after ACT but that eventually, bit by bit, I will start to see some improvement. I'm already on an anti-depressant so no answer for me there.
I am also getting acupuncture for my neuropathy, which thank the stars, is helping though not covered by insurance. The acupuncturist also does acupuncture points for anxiety and depression and I swear it helps. I feel so relaxed and positive when I leave.
I didn't ask him if there were acupuncture points to deal with fatigue! I'll try to remember to ask him next time.
I have a colonoscopy this week and though this is illogical I am afraid I'm riddled with cancer in the colon. I have never had one before because of aftermath of my childhood-based PTSD so I have no "clear" record of colonoscopies.
After I finish acupuncture I have to see a physical therapist for balance exercises.
After 60 if you've had BC treatment you have a second career of medical appointments Rant rant rant!
Still, it's nice to have a place to rant. I get sick of Pollyannas who breeze through treatment and experience no I'll effects afterward. Some of them will even insinuate that you're somehow to blame if you're struggling.
Anyway, thanks for listening!
Hugs,
Peggy
0 -
I so share all of your feelings Peggy. It's strange how we think we're alone. I haven't had a colonoscopy yet and I have a lot of fear about it. Just everything you wrote resonates with me. We're not crazy. Other people can't possibly understand and yes, they say the darndest things! Best to stay away or ignore their ignorant comments. Hang in there, you are not alone!
0 -
I was just talking to my husband about some things and i found myself saying some ambitious things.
It stopped me in my tracks. In shock I turned to my husband and he had a big smile on his face. He said "You're back!" He recognized it just as I had. Anyone who thinks the mind doesn't follow the body doesn't get it. I woke up feeling physically stronger and my thinking has changed. We will recover!
0 -
I've been getting acupuncture for fatigue and I do think it helps, although I had one treatment recently and actually felt worse the next day. There is research to support the idea that acupuncture helps for cancer-related fatigue.
To the pollyanas I would say: everyone is different. I have asthma, and it's totally controlled by a low dose of medicine. I have a friend who had to change careers because his asthma was so severe he nearly died. It never occurred to me to think that it was something he was doing "wrong" to bring that on himself. I was lucky through chemo in that I never had my white blood count go so low that I needed neulasta. But as you know, some people's count plummets with the first treatment.
Decades ago, I had a severe case of bronchitis, went on antibiotics and it cleared up. About a week later, I got up one morning and it was like I'd been hit by a truck. Fatigue as bad as any I've experienced from cancer treatment. It slowly improved over about 4 months. Doctors could find nothing wrong. That makes me think that I have something in my body that reacts this way to extreme physical stress, perhaps some sort of adrenal exhaustion. Some of the research I read recently talked about specific genes involved in inflammation, and that if you have certain sets of genes, you are much more prone to react to the type of inflammation that cancer & chemo can cause.
After that bronchitis was the also first time a doctor said to me "You don't present as
depressed at all, but I don't know what else to try. How about prozac?" Which I went on, and my recovery continued at the same pace, no faster
that I could tell.0 -
BosumBlues, it is true. if you can even force yourself to walk or exercise even a little, and then a lttle more, it really does get better. for me anyway. i would take pictures on my walks, and stop and pet peoples dogs, and bring a big bag and scissors to cut flowers. with paying attention to all those things, it really would distract me. and sometimes i would find cool other things, as sometimes people around here will leave stuff at the curb in boxes for free! but i AM taking wellbutrin, for helping to stop smoking, i dont feel it helps with that, but- it does seem to help with depression that i am sure is caused by femara. one was okay, but my pcp said to try two, one in am, and one around 4. he said it would also help with fatigue, and it does. i am soooo happy for that.
i WAS a person who ran, literally ran- around pretty happy. so i am glad a little of my former self is very sloooowly coming back.
wintersocks! i love that you said "whilst"!!!
And it is true. The A.I.'s can make your cholesterol significantly higher, especiall after a round of tamoxifen, i just found out, and boy, am i pi$$ed. off for a walk, even tho it is already hot.
0 -
its true, we do. my pcp doesnt think i am a good candidate for chantix, and the side effects from that one scare me anyway. but, i did pick up some nicorette lozenges, and i tried one yesterday. it did reduce the cravings or thought of having one, considerably. and i had just read that the fda just allowed the makers of the patches, gums, etc, were allowed to take off the warning to stop smoking before trying the product. i did stop smoking for almost two months years ago, and then slipped....
and then, at the insertion of my port a cath, my lung collapsed! five days of not smoking, and then, well, you know the rest.... maybe we can encourage each other?
0 -
HMMM--Wintersocks--I think you asked about having your cholesterol tested. My Primary care does that, but my MO does a Liver Function test each visit (3 mos) He also does a CBC and a Tumor Marker test.
I did not know you couldn't do chemo more than once--- I was spared it this go around. I do know that if my breast cancer comes back into the same breast, that I can't do radiation again to that breast. ( I wouldn't if I could, it would come off and the other one would get perked up and I'd look like I did when I was 30, at least there---with those fancy 3d nipple tattoo's someone posted either here or on another thread---j).
After Chemo therapy, RAdiation Therapy Hormone Therapy, Physical Therapy----TIME FOR RETAIL THERAPY......
0 -
You CAN do chemo more than once. just not the same KIND of chemo. in rare cases, they will give the same one to you again, but only if its been a long time, and it worked. the cells kind of 'learn' the chemo, and successfully evade it. that is one reason that the also give you two or three chemo's at a time, a chemo "cocktail".
0 -
i think this also may be why a holiday from AIs could be helpful
0 -
I went on a fab walk for 3 hours with my friend and her dog. I am fortunate to live in the wildest most picturesque part of Britain (think Bronte sisters) and Wuthering Heights . Anyway, my friend said I looked "Ill and waxy, with pallor". i did begin then to feel ill!
Seriously, I am just beginning to recover from the cellulitis of a week or so ago. I actually felt quite traumatised by the whole thing and am still on torpedo antibiotics. Going out today felt very soothing to me, the sun, the fields..lovely. I love that walking is a very healing and agreeable pastime. I do find it hard to get motivated, how to keep that momentum going is very difficult . Anyone who manages that please enlighten me how you do it. It took me 3 hours deliberating and finding the energy to put my shoes on. My friend said I had been in the hospital for 6 days and not to be hard on myself. but I still felt bad about myself, guilty and lazy. I don`t like that feeling.
kathec, I said 'whilst?' I did?? is that odd??
0 -
OH Wintersocks---that sounds beautiful. But if you been in the hospital and are getting over a serious skin infection, you walked three hours?????? I probably would have been beyond waxy palor, I'd probably been stiff and stone cold......
0 -
I get plenty of exercise. Start the day on a step machine, a short but intense workout: 4 minutes at a comfortable pace, 4 minutes as intense as I can handle (to the point where I'm loudly gasping for breath), 4 more minutes at a comfortable pace. There was an article in the NY Times about some research to discover what is the *least* amount of exercise someone can do and still have a positive effect on cholesterol, blood pressure, and insulin resistance...the answer was 4 minutes, but only if it's very intense. So that little exercise is both my "wake-me-up" and an insurance policy in case I don't get anything else in that day.
Then I do either tai chi or yoga for 10-15 minutes; I alternate days. Then 30 minutes of seated meditation.
I try to work 3-4 hours, then I do my real workout for the day. My current schedule is treadmill MWF, and other exercise on the alternate days and weekends: hike, exercise videos, or yardwork. I've hiked as far as 7 miles. I had gotten up to running 30 minutes non-stop earlier this summer; backslid on vacation, but on Saturday managed 15 minutes. Today I'll try for 18 minutes. I do a 5-10 minute walking warm-up and cool-down, during which I use therabands for some upper body work.
I wish I could say that all this exercise helps! I'm still profoundly fatigued, haven't lost a pound (but I'm close to optimal weight), my blood pressure is up slightly (probably due to ritalin)...last year my cholesterol down down 30 points despite letrozole, I'll find out in October if any of this has knocked it below 200.
Now that the weather is cooling off I may do more hiking...I live near a state park and it's quite beautiful and peaceful to hike along the river, definitely helps with my mood if not my energy. But not when it's 92 degrees and infested with ticks!
0 -
wow, cfdr! i am impressed! may i ask around how old you are? thats a lot of exercising, great job!
wintersocks! i am not giving you a hard time, i thought you said that, it was funny, because on another thread about a week ago, someone commented that i used that word myself. just a coincidence is all.
0 -
kathec, no worries! my friends sometimes tease me, cos they say sometimes I talk and write in a whimsical way, say in the style of a Victorian novelist!.
I too am impressed with cfdr exercise routine. However, it did make me tired just reading about it!
I did walk about 4 miles today, down the canal it was lovely and peaceful, save for the odd cyclist tinkling his bell to tell me to get out of the way.
My arm looks like it is sunburned as a result of cellulitis and the skin is peeling off in patches. It looks horrid.
I have to check in with my GP about it on Thurs I also have to get my liver function test repeated as my last was 'deranged', apparently that is proper medical term. The doc added that it is most likely due to the industrial IV antibiotics I was/am on. But I am sure that you will all understand that anything to do with the liver is particularly scary.
I cannot kick the low mood that has come back again. I am exercising and eating better, but still it remains. I am finding others just so wearing, everyone in my life feels like they are making demands of me. I cannot understand how they can't see that I am done in. I mean they just so can't.
I feel like I have to stay awake at night just to get a bit of peace.
I am grumpy!
0 -
WINTERSOCKS--"DERANGED" must be the new buzz word in medical circles, My tmj doctor used it the other day and I said "excuse me??" and he laughed....Cfdr---you go girl. Some day I want to be able to do all that.....or at least 1/2 that
I have lost close to 20 pounds since diagnosis, partly from diet, partly from exercise, and a chunk from stress...but I am counting it as all good..... dropped my cholesterol 42 points in 3 months by eating oatmeal every a.m..0 -
Wintersocks, I so hear what you're saying. I'm finding it helpful to talk to a therapist who actually says that I really have been through a whole helluva lot. I'm not crazy. Hoping your deranged liver and your arm settle down quickly.
0 -
wintersocks, you explained just exactly how i feel, except you don't use the stronger words that i would. i feel almost toxic and hateful and enraged, stuff like that lately. i thought exercise was supposed to improve my mood... your arm sounds awful, i do hope it clears up soon, and that you dont have any bad effects from the strong antibiotics.
redheaded1, i am going to try the oatmeal,too! i love it, i just stopped buying it cause HE(a nice guy,by the way) would tease me about eating gluey grass. but i like it.
0 -
Redheaded1, I eat oatmeal every morning too, and when I'm thirsty after a workout I guzzle water with psyllium seed (basically Metamucil without the sugar and food coloring). I did drop my cholesterol from 237 to 203 last year...my next test is in October. Crossing my fingers that all this exercise has dropped it down even further!
Yesterday morning when I woke up, for the first time during this whole nonsense I felt DEPRESSED. Not fatigued, not anxious, not angry, not frustrated. Depressed. Like, damn. Why do I want to get out of bed again? Why bother? Can't I just pull the covers back over my head? So maybe seeing my PCP tomorrow for wellbutrin is well-timed. The docs all raise their eyebrows when I complain of fatigue because they figure that I'm just depressed. Well, now I've been fatigued and frustrated and dismissed long enough that I *am* depressed. So give me some happy pills!!!
kathec, I just turned 57. I'm lucky in that I come from a long line of skinny people, so I've never had an issue with excess weight (well, my current waistline may say otherwise), and I actually enjoy just about any kind of exercise. When I was a kid, I would try to gain weight by eating banana milkshakes before bed. But what would happen is that after about a week, I would lose my appetite completely...trying to eat one bite extra would literally make me gag. I never succeeded in putting on even one extra pound. So I am actually very sympathetic with people who have trouble losing weight...trying to get your body to do what it not inclined to do is VERY difficult!
Wintersocks, I have never been to the UK but the area you are in is top on my list to visit. Every time I see a movie set there I want to go! My husband is a big fan of the English Premier League, and loves beer, so our big dream is a trip to the UK where he can drink beer and watch football, and I can walk on the moors and pretend I'm Julie Christie in Far From the Madding Crowd.
0
