I have been taking IbranCE/Palbociclib an Inhibitor sytemic targeted meds with Aristrozole , for about 14 months minus 6 weeks with covid . I did have Surgical painful lump removed , staged and scanNED several times with PET ! Everything has been taken.care feeling blessed retired though i lots of Projects to finish sometime excited enrgized . But finding it hard to find energy Keep going taking care of daily routine s .
Please do not refer me to notes on Fatigue here having done it and contacted those in medicine . It feels like my GPO . So others just say accept and expect this side effect when the product info sheet says to report it to the doctor . And Its true u do not want to bother them nor bé removed from trestment plan just grateful Even the side effects . Read ing as much as u can find .
Grateful I am now NED , no càncer no evidence of disease , my Onco said in Feb .2022 Now he is pointing to my diabetes .And now saying u hAVE to sometimes take the diabetes offered meds that have those risks already on 2 insulins . Call your own FP .
The covid doctor had qualified me for Monoclonal Antibodies Infusion bc of getting 7 day fever with covid ! We gravel 3 hrs to do that Thank fully my daughter a Nurse was off shift drove !
They the Onco and doctor do want to Keep me on the med above (CDK 4-6 Inhibitor Meds) for as long as it keeps working !
Was it the covid ? My chest still hurts or is it my ribs it the little things long term that do not improve still of body pains with arthritis to from any injury . But thinking it was the nasty falls I had gardening on the slope . And doing my tasks : A garbage bin heavy walking backwards on my slope Drive way , fell on top me ! I hit my head with a lump and went to emerg to bé checked . My shoulder though are painful so I reduce my time on my iPad !
Recently I reported * often that I am very exhausted end of the week into the weekend and tired since . Wondering can the drug cause weakness or can it bé accumulactive in the system ? My glands on y neck are now sore .
Now dragging myself around to my hosp. nearby càncer clínic speak tell the GPO . They do not give the booster drugs like others get on conventional traditional Chemo . The protocol is to reduce the dosage . Which I did from 125 to 100 mg . Stili, very dragged out.
Telling my GPO physician again ! Now I am on 75 mg for 21 days the pharmacist said I should start to feel better .I am NED celebrat ing this has been Special to do as this forces myself to have positive goals and plan being away . With change of scenery bc of long lockdowns with isolation we had to do ! . But suppose to stay on the 2 meds to.control the growth of càncer starting or spread . I get blood Hemoglobin labs every month my levels are half what they should bé 2. 7 . The norm is 4-11 wbc . Now I think it is a placebo I got . 😤
i have minimal infection on my face. . But not as worse as bfor my abdomen is bloated some constipation issues & slight gum bleeding and pain spasms in legs with cramps and groin where my CLOT was found . On meds for that and diabetes .
All I need is some booster given in an IV ….But it is not done for my TP .
i am at all times physically low and dragging myself around by Fridays I am depleted no energy Saturdays , I am done finished . I eat nutritionally well doing some little work inside out. I Even started to use the Rec . pool to walk in , to turn this around get endorphins , but feeling weak . Finding gross motor activity is Rare bc of how I feel, being low to ño energy . I did have covid off meds for 37 days end of this Jan 2022. Some mention it could bé from the covid just depleting others longer who had contracting it . But only in the on set of pandèmic had it impacted ppels lives to death !
I am finding it hard to function past Saturdays and just finished . My family is going to Keep me socially engaged today for mothers day But I feel depleted not really wanting ro eat either . I seem to pump out alot of Fluids /urine on Ibranca monitoring this or flooding standing up .
I do not mind losing weight ! Which is normal for this drug, and is happening . Its just the low energy and weakness. And I am over weight . I will try go out.cut some grass and dig like I did this week working late . I am retired and others who work have family kids or older are doing alot better with energy . I am trying more return ing to my activi ties , the pool walks . But do not last long very tired with pain in large pelvic bones and shoulders as arms hurting when walking having to stop it been that way a long time b4 càncer except my shoulder carrring just my body weight . And chest still hurts wjen laying down . I am usually spirited bright and smiling . But whiney now I just want to bé alone especially the end of the week .
I periodically search more on this drug I take being told this is expected effect of low wbc cells levels etc . God this must bé what leukemia is like for some ? And thats that for Elle29 being tired fatigued dragging around to move live longer not complaining needing a IV boost or other tests Amd other Surfer IES need ed long over due on my heal growth a Golf ball size benign , a clot in my groin and spasms , cramps on legs some light pain across my chest . Now I am beginning to think did I have càncer at all ?
Your body has been through so much, it’s no wonder you feel fatigued, tired and have no energy. Any one of those points you mentioned would cause fatigue, tiredness and a lack of energy, but you have had all of it combined. Plus, you are still receiving treatments.
I looked for an article for you, but did not find it. An oncologist said that many patients, families, caregivers, friends and colleagues often have an unrealistic expectation as to how quickly the body recovers and returns to normal after cancer. This oncologist tells patients to add their total number of weeks from start to finish (include surgeries, infusions, oral meds, radiation, etc) and multiple by three weeks. That timeframe is not applicable to everyone and it’s an estimate.
I think the point the oncologist was making was that patients do not finish treatments one day or get the awesome news of no evidence of disease and instantly feel well. This is not recognized or acknowledged enough and can be a significant source of frustration.
In my opinion, the aftercare of cancer needs as much attention and consideration as the cancer treatments with an extra dose of compassion!
For you, elle29, I am excited you have been told there is no evidence of disease! In the midst of side effects, healing and recovery, I hope you can enjoy many walks with your adorable dog, and time with your family.
re-edited :Thanks @S2020 I want to express how much this gift lifted me up what u found and shared ! 💝
I did enjoy social time yesterday and further more going away to a nearby resort next with one of my daughters and dog included walk the beach there . Working on making her big dreams come true a late bloom . As she made mine , to help enjoy my home here with her sisters .
Walking hurts in my back , hip and golf ball heal . I have to limit my time online still researching , the direction now has something to do with Immunotherapy . To tell my Onco of the pain . I stretch to hear that crack in my back. The medication bleeds through my lower legs I noticed in the foot massage yesterday . Get alternative treatment , I had wonderful foot massage & up to calves . I se my lower legs all discoloured . Half to put long socks on . Did the cancer meds make that worse or other medical reasons ?
Specifically grateful for this perspective S2020 I did not realize nor aware but heard that attitude could have some improvements . There is now a way to speak on that through going to meetings on advocating these concerns through our health provider my daughter shared ! And now through Zoom u can speak to another doctor !
Yes , either I did not ask specifically about “after cancer from my Onco .” I am sure when I meet up with him in the next appointment June 1 st all will be remedied and the path to recovery will be active and better . What further needs to be done right now is they lessened my dose . Nothing else in that protocol .
Hope for Energy
Hoping energy comes back . Bc I had COVID . With diabetes concerns the treatment causes lung inflammation my spine and back is hurting .The GPO says it’s my diabetes now getting the A1C results . I am to see my own FP/GP I am too tired to eat waking up but grab a sandwich . But ate happily a full meal with others celebrating Mother’s Day . Yes I will take care of myself .
I am to continue on treatment meds .As no doctors explained symptoms after cancer some are left with on their own . My mind is not settled just with what others received , the part where the doctor / Onco just drops you not putting any closure ?
I So understand doctors need their time off .At least I got a letter .Having distanced himself quickly going to a sabbatical after 4 mths to refer me to the cancer clinic here of GPOs . Is not as comfortable with his approach I felt better . He’s only interest is Cancer Oncology he’s glad to get back to !
It’s like being abandoned some share & feels not wanting to go their and surely can’t be true process . I have heard here read of , others speak of no longer hearing nor seeing their Onco ? The professional remains professional and distanced this way to focus on whats important . But when he speaks to me it’s almost personal and so caring . I feel more better and healed ! At ease to plan my life .
Doubts is it me or them ?
Doubts now creep up being so long to see him , next by Telehealth . Is this my final appointment ? As some doctors with other patients . Who may become attached to patients and need to grieve too , bc we are not perfectly human . That only God , His son is ?
And now some saying ( not part of my team ) matter of factly this fatigue tiredness and weakness is normal partly from my treatment . But who and where do I go to improve ? Upset in the attitude to me now and not comforting but makes sense now , I am fighting to I guess not to accept being stubborn : I can put aside having to be pumped up to keep a positive outlook , optimistic many of had to be to get to the point of NED . Clinical Remission .
In the rush in comparing oneself to others , after cancer in expectations . Or loss of a loved one , like a sister or spouse who had cancer the same time left with grief .And mental health impact as depression or their whole family unit , from cancers ravages in no cure . This is now changing with immunotherapy , of using one’s own body cells from bone marrow by taking Inhibitors .
Others make Changes in lifestyle or some moving away to new life . I thought I had done by coming here by the coast of the Salish Sea BC .Yet it returned to be c again !
Return to work : no brainer ! 🤔😋
Some who went back to employment or activity , continued in more treatment to stay the cancer and move on forward . And catch-up with other health matters conditions existing pre cancer , needing attention and left with after effects symptoms realistically , from their line of treatment plan .
Some have side effects to be left with here ; like lymphatic pain swelling to wrap their arm , from having to remove too many lymph nodes or unbalanced breast disfigured perhaps reconfigured . And shock of others from double Masechtomy or removal of sexual organ or limb . @Runner Girl , Yet we consider ourselves fortunate to be alive not accepting the above .
A Fit Bit reminds me to go outside in the sun ! My diabetes measures remind me take insulin! Eat ! My back hurts I have pain there and I don’t want to take pain pills to function .
Now I ask after cancer , what do I do because the fatigue and tiredness is not going away waking up with it after cancer but some glimpses and being treated , will it ever go away or specific to moi ? Another friend here insisted the Onco scan her back ! She got diagnosed cancer there too . And the chemo gave her multiple painful sores !
Questions after cancer ? Do we ask for rehabilitation or wondered do I look for a group now after cancer , here called Inspire as Wellspring have many groups in support . Do I ask who the doctors or my Onco next appointment what I wanted to ask , “ am I still Mets , “ someone was told here .
Been … Exactly 2 years ,
according to what you said in the the time line article ?
Primary surgery to several, nuclear scans from start to finish ! And having COVID this winter . Had no rad though or conventional traditional treatment, nor additional surgery required . …Accept my own cells from bone marrow are being used like self immunotherapy , others get stem cells implants . Why don’t I just get immunotherapy ? What is that exactly scientifically , micro biologically ?
Another Qiestion : It’s now using your own body for immunology treatment from your own bone marrow internally, I figured out your own blood cells as wbc , specifically neutrophils get depleted !
Which my diagnosis could become Hers II my Onco said . Or some blood disorder Leukemia someone here said ? And a cancer anniversary to get past . @Faith1 and @Brighty I am so sorry if I did not understand when you were at a certain stage yourselves . Let’s stay as friends , as EAs with laughs .
All I can think of is others like Dauntless and Dave . And Guy here or Angus as others we do not here from as much @Cupcakes @Buddy65 , @Boby1511 @Saharabee .
I am left with with a clot so far that can become Pulmonary something in my lung 🫁 and osteoporosis surfacing over the next 3 years in a side effect .
I do not know having not spoken to my Onco yet but have some idea know what to ask now . Or do let myself cry ( on a medication I take that keeps tears back from non stop spiralling into something else dark and grievous spiraling )
love grows here
All I know is I love families . And some of us here have become family bc we care to look out for others , still above ourselves , even in grief and loss, giving of ourselves .
We can laugh asking others , and “how are you ? “ Watch this funny you tube video of MaD TV : Stuart and overgeown boy with his single mom . Does not get overwrought but lovingly explains and as actors they find they cannot sometimes keep from breaking out laughing in the skit between each other face to face of the situation they are playing .
… And then JoY pops in , my daughter tells me my grandson is now taller then her and then the “ahh ha “ moment came ! ...Telling her I noticed wondered why he stood beside me being silent . She said , because he ‘s happy to be finally taller then us ! We are learning and finding boys fascinating . I had no siblings nor relatives here but parents .Pple stepped in some came and went . She is from all sisters family of mine and her spouse is all brothers .
So nice and wonderful living here I can enjoy tourist resorts and to have extended family to grow with and #KICK that wretched cancer out !
And get better after cancer somehow , needing a group support , to meet with to be physically active somehow with them and in pain .I am too tired .
- being overweight
- having a fall where you hit your head
- being on chemo meds
- having diabetes
- having covid
Even low white blood cell count could be related to anemia, which could also leave you with fatigue
It almost sounds to me as though you need to have your doctor(s) take a team approach to resolving your issue.
If you had a concussion, there isn’t a lot they can do for that, nor is there much they can do for long-haul covid or the after affects of chemo, I don’t think.
But you might check with them to see if there’s something they can do for the anemia (bearing in mind that iron pills are apt to cause constipation), and if it’s ok for you to take other vitamin supplements such as Vitamin D.
And, as S2020 said, perhaps your body just needs more rest. But, it still wouldn’t hurt to ask more questions to see if you can find more answers.
Oh My…. @elle29 I am so distressed reading about YOUR distress. I empathize with your absolute exhaustion, tiredness, dragging and the inability for it to lessen. I can relate. I guess misery loves company because no matter how much I sleep, or nap, or neither….I remain pooped and ready to stay horizontal….nothing revives my exhaustion but I am learning to tolerate it as it is a definite adjustment annoyance after head and neck radiation. I had 36 rounds for tongue cancer 3+ years ago.
We all hope you find positive ways to recover.
I experience “cancer fatigue” as they call it, I am trying to pace myself. I am also in a lot of pain due to the side effects of the Letrozole medication.Severe muscle and joint pain plus the pain where the lymph nodes were removed. I also know that stress makes it worse. Lately my anxiety is up due to issues at work, staff shortages, other staff being burnt out etc… I do not want to take hydromorphone and continue to take two extra strength tylenol as needed, plus my cbd oil. Your tiredness could be due to a number of things you mentioned. The fall, the meds, low iron, covid …. I suppose you should have tests to rule out certain things. Also slow down a bit and maybe take naps etc… I hope you get some answers. Take care of yourself.💗