Hello gorgeous women. Photo is just for the cuteness level. My little girl, Stevie.
NOTE: THIS POST IS FROM FRIDAY 17TH NOVEMBER. I’M GETTING ASSESSED FOR THE TRAIL TODAY. 20/11/23
I PROMISE I WILL UPDATE EVERYONE.
It’s me again, Chris. From Oz.
Having a little bit of a teary tonight. Feeling a little bit alone… well a lot alone actually, because I am anaemic and sore and tired and crying. And I just wish I had somebody to make me a cup of tea, and my dog walked out of me When I started crying. She’s back in the bed now.
I’ve been told I’m anaemic (Haemoglobin is now at 98 which I think is pretty low) and also on top of that…. My neutrophils are very low after having just finished my very final cycle of Ibrance. As some of you know from my last couple of posts, I’m coming off the Ibrance/ Anastrozole cocktail and I have to choose between a trial, in which I will get served up either Piqray or Capecitabine/Xeloda. Or just go the Capecitabine way.
(I have taken on board all the things some of you suggested about the choices between Piqray and Xeloda, and I still think I may go on the trial, as I can come off either one of them and try the other at any time on the trial. But can’t do that if I just choose Xeloda straight up)
But my question tonight it’s not about the treatment it’s about anaemia.
Have any of you ever had anaemia? My oncologist told me she’d probably think about a blood transfusion if my haemoglobin count, got any lower. But of course she’s a researcher not a doctor and I don’t know if I even thought to ask her what I should be doing to treat the anaemia. I’ve been eating, dried apricots. Lots of fruit. I’ve been having chicken liver pate. Made myself some bone broth the other day and turned it into a beautiful French onion soup. I’ve been trying to eat things like ham and cheese. I know that B12 and iron something that I’m lacking. But I don’t know if I’m allowed to take it as a supplement. She never suggested it. I’m feeling awful. Aching bones, as I’ve got some sort of infection in my body, I feel cold and really weary all the time. Like my fatigue level is through the roof.
Any thoughts?
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Timtam56
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Hello So sorry your feeling low...sending you a big virtual cuddle!!!
As far as supplements go....most oncologists are very reluctant to prescribe any as they can put unnecessary extra loads on our kidney and liver function which are already doing overtime processing the lovely cocktail of chemicals that we take as treatments.
I've been aneamic most of my life, long before diagnosis....I find eating dark leafy greens helps...with some orange juice as a drink or some lemon dressing as the vit c helps in absorbing the iron....so fruits like strawberries, blueberries are also good as high in vit c too.
Bone broth is an excellent idea....I'm almost veggy but I eat some sea food and will make a batch of broth when I'm feeling low too.
I try and eat a big mixed variety of colourful veg....like beetroot, aubergines, tomatoes, carrots, courgettes, mushrooms aswell as dark greens, some pulses like lentils and fruits too.
I know it seems contradictory when you feel like curling up and crying but getting out and having some fresh air, sunshine and a little bit of light exercise can all help to improve moods.... I've had a crappy week and have been feeling down myself....
I've taken to sitting on my rooftop in the early morning sun with my cup of matcha oat latte and which ever cat cares to follow me from the bunch of 10 moggies...(the roofs flat so its easy access just a flight of stairs)... I find this has perked me up a bit.
Thank you Zoe for your beautiful words. I will take a lot of thought you said into account. Now I understand why the oncologist never ever suggests supplement. And I have been doing exactly what you are saying by trying to supplement all these things with food rather than going against what the Cancer hospital might think. I thought as much actually because I had a situation a few years ago where my niece who is Health junkie kept trying to get me to take this and that, and I was told it no uncertain terms by the Palliative team, that a lot of them were contraindicative. I really don’t like vegetables, but I’ll try and make some smoothies with some dark greens and some fruits. And summer is on its way here so I should be able to get out and get some sun on my skin.
Also while I remember....marmite or vegimite as you guys call it ...is a good source of B vitamins.For achy joints I find I get some temporary relief from magnesium salt (Epsom salts) added to a warm bath. A soak before bed is helpful for sleep too.
Ha ha. Funny.I’ve had a real hankering for Vegemite and have been eating a lot of it lately. And…. I don’ have a both here, so I just bought a funny think called and Ice bath. Put it in the shower recess and have been filling it with yummy hot water and ….. Epsom salts! Sooooooo good.
Wow Zoe…. Thanks so much for this information. Just reached a blip that needs sorting so decided whilst off work I start sorting my nutrition out.
I know it’s things we are already aware of, but when things are muddling along I get complacent and forget I need to help my body stay strong through food. I’m personally not a fan of supplements as I never really took any kind of meds before MBC.
So sorry you have had a crappy week, hoping you feel better soon. I’ve been in between emotions too…. When alone, I’ve shed tears twice this week 😊 smiley emoji because it’s so therapeutic. And a little sunshine definitely does you good, despite the cold in the UK.
Sorry Natasha. I missed this message. Yes. I agree a few tears here and there are actually good. I’ve always felt that sadness, fear, any negative emotion, is just like hunger. It will pass when you’ve dealt with it.
We are here for you. My red cells were really low too and my doc gave me a booster shot. Low numbers make you even more tired and just listless on top of the meds that make us so tired. Protein is important too. I was surprised that mine were low. I too eat leafy greens and cilantro just before my blood work and many times a week. Red meat, extra lean too. Peppermint tea is good too. Hang in there. Sending lot's of warm energy your way. Blessings
Ohhhhhhh. I didn’t know about peppermint tea. I’ll look it up. I love it but don’t often have it. And cilantro, (we call it coriander here) I love! I’ll get into that stuff too.
I really feel so lucky to have this forum to come to. What was the booster shot if you don’t mind me asking? Maybe I should call my GP and make an appointment with them?!!?!?
It is called Epoetina. I do not have any issues with my kidneys or liver and my urine is never dark. It was given to simply help produce more red cells. Quite frankly, I did not feel and difference to my energy level.
oh dear, Timtam…here I was just two weeks ago feeling scared and lonely because of having to make a med change between those same two drugs. Cancer is definitely an isolating disease…both physically and mentally. But your low red blood bells and neutrophils are exacerbating your fatigue and quite frankly, depression. Remember, this too shall pass and you’ll be feeling better once again. Eat all those recommended nourishing meals to boost your blood cells production and give yourself permission to relax without guilt.
Keep talking to your ONC about your physical and mental symptoms….she cannot dismiss your feelings. Especially since you may be starting a new drug regimen that will demand baseline blood numbers.
I’m off IBrance and anastrozole because of upcoming radiation which I’m told will stress blood cell production. Then I’m starting on Xeloda…I hate that they always start us on the highest dosage and then start cutting back when the body functions start to crumble…whatever happened to a slow load? I’m already prepping myself on research that supports lower dosages for long term MBC use.
Hang in there…do try to enjoy the start of warmer weather in the southern hemisphere …as we lose hours of sunlight and start the long slog of winter. Best wishes for better days.🙌🙌❤️🩹❤️🩹
Yes you are right. All the physical stuff leads to feeling low. I would not say I’m depressed as much as feeling things like fear, and aloneness, when the feeling arises. I worry a little about the word depression. I have known depression in my life, and this is not that.
But you are on the right track. And we are going through similar stuff with our change of treatment . It really is scary. But yours sounds even more so with the radiation.
Keep us informed here and let us know how you are going. This is such a great place to come to. Especially in the wee smalls, for me, living alone, when all my friends and family are trying to shut down for the day.
You will definitely hear all about this next step..radiation. I actually asked for it hoping it would tamp down the pain in my back. Monday is the big day…fingers crossed…and you, dear, stay strong 😊
I’m due radiation soon also - praying for us both x
Also Dragonfly…. A belated thank you…. When I had to get a port fitted, I dodged that bullet for 6 months (fear, anxiety every negative feeling I had was there), but when I read your encouraging post that you had written a while back of your personal experience, I knew it was the right decision for me too.
Amazing forum with amazing people x despite the rotten reason we’re here!!
I agree it’s an amazing forum indeed…sharing news and ideas while supporting people in need helps us all. Best wishes for a successful radiation treatment.🥰🙏🙏
Cute pup picture. I was surprised to hear, because usually dogs want to console you.
I’m so sorry you are going through this alone! If I lived close by, I’d be making you a cup of tea every day!
I’m also a bit anaemic and nothing to wear you down then feeling so very drained all the time. Vegetable juicing (with and without fiber) has been my saviour. It infuses the body with so much goodness as it would be impossible to eat all that! Beets and celery and carrots, up to 4 cups a day! 💪 💪
For me, moving my body a bit (think Qi Cong) no matter how exhausted will give a bit of energy, believe it or not!
I just want to give you a big hug and please do not lose hope. One day at a time.
Oh Miriam. That is a lovely response. Wish I’d received it before I went to sleep.
Yes. I was surprised too. But she’s incredibly sensitive. I actually think it was too much for her. Maybe if I’d been quiet crying she may have stayed. But I was truly howling it out. Well not howling! But my body feels so sore. I couldn’t have taken another pain killer on top of all I had already taken. Soni was at my wits end. It would have been lovely to have had a cuppa and a cuddle. I’d been looking through all my medical notes and trying to find out how to work out what blood calcium levels were. So I messaged a friend who is a nurse and she told me to stop googling. So I felt a bit like I’ve been wrapped across the knuckles as well as feeling really yucky already. And I really think Google these days actually does have a lot of really good information. But I couldn’t work out what being anaemic and being on Xgeva/denosumab for our bones, had to do with blood levels. And I had also rung the hospital yesterday to try and find out about all of this but the Nurse wasn’t very helpful. So yes, I was feeling very alone on top of being alone.
Anyway it’s a new day today, and the sun is shining, and I’ll try and get out and get some sunshine into my body. The trouble is, I feel so weak. I can hardly walk. But I guess I could sit and throw the ball for this little rascal.
So,so sorry you have been going thru such a sad period . Cancer just wrecks a former happy experience of life .I take an anti-depressant and Alprazalam just to face each new effect MBC throws my way. Prayers that things may improve for you SOON💕
I would have replied earlier but I have been down and out with a terrible chest cold. I guess this is how people would have been feeling while having covid and couldn’t breathe. Jesus!
It’s a sunny, crisp day here and so I’m sitting on the balcony with tons of blankets. Love that vitamin D!
I didn’t always have the greatest eating habits but especially people in the health care saying diet doesn’t matter, in this day and age just boggles my mind! I mean a cup of celery juice surely most be better than a donut 😂
You can write to me (privately) any time you like Chris! Nobody should have to feel alone in this and there are plenty of us to chat with!
You want to improve your blood work? Here’s how, guaranteed!!
Oh that is soooooo gorgeous. I watched it and loved watching others doing it. But you won’t find me doing it! Ha Ha!!!! Ohhhhh no sirrrrieeeee.
But what a gorgeous woman huh?
I bought an Ice bath, (cause I haven’t got a bath) and I fill it with yummy hot water!
Thank you so much for your care. But just letting you know, I’m feeling a lot better today than I was feeling the night I wrote this message. Thank you.
I don’t normally feel alone. I love being alone. And I am sure this pain and soreness and lethargy…. is just a phase. You can’t be on a very strong, life preserving regime, that keeps you alive when the cancer inside you wants to kill you, for 5.5 years, and not have your body revolt! Anyway. That’s how I see it. I will keep fighting. Don’t worry.
But I’m not wanting anyone to worry anymore. I’ve been in to the hospital for my discussion about the trial and I’m going to be starting in a few weeks.
Now there’s a great idea for a hot tub in the yard 😂 🤣 Luv it!! Yeah, that lady has such a beautiful spirit. I could learn from her. 😂 I friggen hate the cold (I’m even contemplating going to a warm island for a month!) but I have noticed a huge difference now when I have a cold shower after a really hot one. You built brown fat!!
It’s indeed so hard sometimes to believe that most things are just temporarily in life and that indeed most often the sun does come out after the rain!
Nothing wrong having a huge pity party the odd time! We certainly all have them! But your cry reminded me of my daughter’s when I first told her the bad news and her sobs were soooo loud and sooo bad that it almost became comical and I almost bursted out in laughter. I know, bad mom! 😂
So happy you start your trial soon! Toes & fingers crossed! We still need to do a road trip! 😂
Hi Tim Tam-Chris, I’m sorry you feel so alone. Thank goodness your sweet dog got with the program and came back in to you.. thank you for explaining you perfect rationale for choosing the study… you get to take whichever you get but still switch to the other! That seems like a good deal. I am really feeling very well on xeloda except for a touch of the HFS but I love that it is oral and no N&V or FATIGUE!
Re: the anemia I am a former dietician but you can’t improve your diet to eat your way of this kind of anemia caused by the ibrance at least according to my oncologist. Tonight just celebrate the time you had in Ibrance and get ready to move on… likely your red blood cells will bounce back and you won’t feel so retched… surely thst will be true? This is all part of that roller coaster… and soon you will be on new regimen… you will soon know which one as the HFS for me was within the first cycle.. do you get to take a break and have a nice washout period before starting up? Hope you dog is cuddling with you right now!
Oh gosh you have given me so much hope thinking that the anaemia has been caused by ibrance. Wow. I feel like this knowing has been lurking in my mind… but not clear enough for me to take seriously enough.
Okay. Dusting myself off, and I have to say , also feeling a little better today than I was yesterday.
Yes, Ibrance. I had low grade anemia when I was on it. My onc said it was not enough to do anything about it, but I do think she would have done an injection or supplement if it had been really low.
Another thing: I once gave myself what I call spinach poisoning. There was a particular spinach salad from Chez Panisse that I loved and ate daily. Wound up with black stools, diagnosed as excess iron. So that is a quick way to bring up your iron levels. The salad was to wilt the spinach in olive oil with garlic, throw in croutons to soften, and then red wine vinegar. You can put on bacon bits. The trick is not to cook the spinach, just wilt it. Even if you don't like vegetables, this might pass.
That sounds nice. I do a spinach salad with avocado and a dressing of garlic and ginger (equal parts chopped), lemon juice, oil, salt and pepper to taste. In fact. Might make one of these tonight! Thank you.
So sorry you’re having such a bad time. I had to have 2 blood transfusions a couple of years ago. I lost a lot of blood in my stool when my lobular was diagnosed in my stomach. Lots of tumors. I was so weak I couldn’t get out of bed. The worst part of the transfusions was that they take a few hours to drip. Otherwise, nothing to it and I’ve been so much better ever since. I would not hesitate to have one. You can’t face everything else when you are anemic and so weak. Wishing you the best.
Hi my little dog looks just like your dog but is a boy & apricot color. I was quite discouraged just a few weeks ago & now I am just fine. It is a roller coaster & something that only our group understands. It is possible that your little dog thought it was something outside that scared u. These little darlings are so funny . Please just give yourself permission to do nothing & see if everything looks better in a few days’ Take Care Lou Anne
Aw, I’m so sorry to hear about you feeling low. Just making any decisions about treatments is tough. About the anemia and blood counts, that’s how the cdk4/6 inhibitors work. After 6 years on the Ibrance and anastrozole, my blood is not recovering, so we’re going from 100 mg to 75 mg (I started with 125 mg for about 2 yrs).
Every test for iron has always been perfect. It’s just with this medication, you can’t access it. Of course, it’s good to have a healthy diet, but it may not improve things right now. You need time to recover from the Ibrance regimen.
At this time, I’m in your shoes, but not as bad because I had two and a half weeks off the regimen. I do take b12.
I think the bone broth and all of the other things you are eating are very nourishing. It’s a good way to give yourself some self-care and love. Please let your doctor know what’s going on. Maybe you do need the blood infusion.
I am sorry to hear this- it is so hard to be cheerful and positive when you are exhausted and sore. You seem to be doing the right things and I think it is worth seeing the GP about your anaemia as well. There is a good Facebook group for people on Piqray or with the PIK3 mutation- I have it but may not be able to try it as I had already been on Fulvestrant/Faslodex as part of a trial and it did not work for me, so my oncologist has me on Paclitaxel which I am tolerating well so far. The stories on Piqray are a mix of the good and bad as always, but I prefer to be armed with information so will continue in the group. Anyway I hope you feel better very soon, we will all be rooting for you. And Stevie is adorable!
How are you coping with Paclitaxel? I’m having a break because I need radiation to a pest! How’s the hair situation? I’ve still got enough but there are sparse bits. It’s really funny in way…. Because we can’t dye our hair so grey roots are my problem. My biggest s/e are my tingling toes constant pins and needles sensations. How many cycles have you had? I’m hoping to go back after radiation, but I know nothing is guaranteed. Tc
Hi Ntash, So far so good but I have only had the first 3 sessions of a planned 18. No hair loss yet, am cold capping, but early days. My worst symptoms are sore tongue and bad insomnia from the post-treatment steroids, but I feel so much better than I did with chemo for my primary. I do have some numbness in the bottom of my toes but that started before I was on chemo and hasn’t got any worse so far. Hope your radiation goes well x
So sorry to hear you’re having a difficult time I understand the difficulties of getting advice regarding health supplements. This might not help too much but the best advice I can offer is check with the pharmacist. They know much more about effects on medication in fact my breast nurse and oncologist both recommend speaking to a pharmacist. Hope this helps and you will feel better soon. Xx
What great ideas you all have here. Yes. I will also do that.
But you know?…. Today I have just remembered back to a conversation I had with a breast nurse yesterday when I rang to get help.
it went like this.
“Hi…. Blah blah” I introduce myself and tell her the problem. “Can you tell me what might be causing the anaemia?”
Her. ”No. Sorry. Your oncologist will help you with that on Monday at your appointment.”
Me. “But I’m feeling pain all throughout my body like I have the flu or I’ve got and infection. Do you think it could be from the anaemia, or from my Denocumab?xgeva injection last week?”
Her. “Sorry. I don’t know.”
Me. “Can I speak to one of them nurses who might know please?”
Her. “I think you’ll find they will say the same thing as me and it’s best to wait until Monday.”
Me. “Thanks” (Furious. Didn’t have the energy to go on.) hung up.
I think it added to my feelings of aloneness last night.
Sorry you are dealing with this. As a nurse who formally worked with pre surgery pts who were often anemic, sorry to say, diet won't improve this low of a Hgb. Your doctor has to treat and IMO there's no reason to wait.
If it were me, I would say to my Oncologist.
"I am anemic and very symptomatic. I want to get to an optimal level of health to feel better so I can fight cancer and live to the fullest.
I would like you to consider IV iron and a blood transfusion"
(I said to say "like you to consider" and not "I want" because many MDs have fragile egos and don't like to be told what to do.)
Your body can't make Hgb without sufficient iron so if you indeed have an iron deficiency than that needs to be treated. Oral iron takes months to have any effect on Hgb, IV iron much quicker...days to weeks, but even in Canada where we have universal health care, you pay for it. Just FYI as it's not cheap if that's a consideration .
But bottom line ....Hgb of 98, you need a blood transfusion. you are symptomatic and there is no reason at all to delay transfusion.
You will feel a different person once your anemia treated.
Also, I don't know if you are like this, but I sometimes downplay my symptoms saying "oh, I don't feel too bad". If that's you as well, do the opposite. Tell your Onc exactly what you told us and how you feel emotionally and physically, don't hold back.
All the best, please let us know what happens. I want you to feel better and felt so bad hearing how terrible you feel. Wish I could pop by and make you a cup of tea. ♥️
Thank you so much. The onc told m,e a month ago that she didn’t think my Low Hgb was worth worrying about, and then it was 100. But also told me if it gets lower she might consider it. But did nothing!
This all adds up. All that you are ALL telling me.
I’m taking it all on board, and will get them to “Consider” lots of things on Monday. I’m so tired of living alone, constant self advocating, then now this. It’s been too rough this last few months. And yes I am exactly like you. High pain threshohold, and a boldly martyr. I’m sick of it right at this moment and feel from all your thoughts, I do deserve to feel better while I’m on this mortal coil!
Glad you are seeing your doctor on Monday. Tell her about all your symptoms, fatigue, general malaise, low energy and of course, if you are having any light headedness. I know the general guideline for transfusion might be a bit lower (less than 90) but all other factors should be taken into account. I think someone already mentioned, and I do not know if it would be right for you, but ask also about Erythropoiesis-Stimulating Agents (ESAs)
I think there are quite a few of us who regret living alone when the hard times come or when we need to advocate and do not have the energy. I wanted to do a survey of this group to see how many have a supportive partner, an unsupportive partner, or are going it alone, with friends. I tried to sign up for a support group with Red Door (used to be Gilda's Club) of people living alone with cancer. It was over-subscribed and I couldn't get in. This is a new group for Red Door. Apparently quite needed.
I have a set of friends who usually track my progress. They stopped! I guess I didn't die soon enough. One had a good reason, another is just too busy....
Oh TammyCross. You are speaking my language. I often think about all the friends of mine, who grieved and grieved when they found out that I had terminal Cancer. We used to sit on the phone and cry and talk and cry and talk. Now we just talk or I try to keep the conversation away from Cancer or pain or all the things that I’m going through because I feel that they have a bit of their own Cancer talking fatigue.
Could this possibly be a thing? Now that there are many more medications out there, to keep us alive with this disease. I’ve said to a couple of my friends I feel like a fraud I should be dead, and we have a little chuckle. And they say no no no no no. But my reality is that I started out with this huge news of MBC, 5.5 years ago. Who knows how long I’ve been living with it before my diagnosis is the pain prior to that was doing my head in, but no doctors were listening to me for eight months. Then switch forward to 5 1/2 years and they all tell me I’m looking well.
It’s a strange New World! And I agree. I did so well living alone until it comes to a time like this with switching medication and pain levels rising and anaemia and I have to do it all alone. Whereas when my partner died four years ago, I did nearly everything for him, remembering his appointments writing things down in the calendar, talking to doctors when he was frail.. But no, such thing for me!
I've been thinking a lot about this - long term survival with MBC (I'm 4 years) and friend fatigue about it. My neighbor across the street who I used to hang out with quite a bit wont even make eye contact. They don't understand I suppose - maybe think our diagnosis was fraudulent - no surgery and still here. It does make you feel isolated and I'm so sympathetic to this - I am grateful for my husband of 36 years but I know it wears on him too. So grateful for all of you for sharing these raw emotions.
Compassion fatigue? People say I look well, so they don't want to hear that I don't feel well. Lets them off the hook. My maladies keep changing, and they don't have time. I think I may have to rotate friends that I talk to about it with.
Thank you Goya. But from all they are telling me here, it’s the long stay on Ibrance that has done it and food (although it may be good for me ) won’t fix it.
mom used ibrance for 18 cycles, she had no blood problems, but she was much more tired than she is now on taxol. she has been drinking juice since dhe was on taxol, maybe that helps. try it, you have nothing to lose.
Chris, I'm so sorry you are feeling low as well as struggling with anemia and pain. That is a lot to handle. I also have been told not to take supplements as they can interfere with the effectiveness of the meds. The nurse had told me I could take Vitamin B 12 but when I did, my tumor marker went up about 11 points from the prior bloodwork and my doctor had me go for a scan to make sure everything was okay. I went off of the B12 and the marker went back down. I do take an organic multivitamin and a raw calcium/vitamin D which she said was okay. I do smoothies every morning with three types of berries, a protein powder, kale, spinach, Kefir and almond milk and add cinnamon or ginger for inflammation. I eat fish several times a week and beef at least once a week and have various veggies and mushrooms. My numbers have never gone really low on the Ibrance and I think whatever I am doing must be working. When first diagnosed I was supplied with the name of a cancer nutritionist and she has been helpful along the way with suggestions for the best foods to eat. Perhaps you could ask your doctor if their practice has access to a nutritionist that could help you. I'm sorry you have to switch meds on top of everything else. That adds an additional level of stress. I hope you will find some solutions and make a good decision about the next treatment. I am sending hugs and prayers to you and your adorable Stevie. Take care of yourself.
Anemia is quite common with cdk4/6 inhibitors, particularly with abemaciclib/Verzenio. Many such cases including myself have completely normal iron levels but very low haemoglobin. Mine is 100. No diet can change that, it is a side effect of medication which affects the way blood cells are produced in bone marrow. Blood transfusion is usually given when hb falls to 80.
True, as dictated by insurance companies. They don’t care that it greatly reduces quality of life. I could hardly walk up stairs without feeling very lightheaded and almost passing out. Even went to ER and the kind doctor felt bad he couldn’t help me.
I find it interesting that some women here are saying that blood transfusion did not help them at all and others the opposite, that it greatly improved their condition.🤔
I got anemia while taking Kisqali. I had a blood transfusion and it didn’t seem to help much. After 2 weeks on Xeloda I felt better and my blood work improved
Great to hear your feeling better on Xeloda. I might be put on that with this trial I might be entering into tomorrow. How are your hands and feet so far?
I had iron deficiency anemia. I had to consult with a hematologist and was give three infusions of iron. Huge difference. That was about 3 Months ago and my numbers have been good since.
Sorry you’re feeling down. This is such a hard thing to go through this
I’ve been on Xeloda for 8 weeks. I was quickly reduced to one week on and one off. First I got very sore feet with blisters. Now I get some blisters on my week on and then they go away. I use voltaron and urea cream. They help. So far nothing on hands
I was dx with MBC in June and anemia. Received two transfusions. Was started on Faslodex and Kisqali. Three months later, received another two transfusions and r c booster. Was switched off Kisqali to Ibrance and hgb and rbc counts are holding steady. Thought was that cancer and Kisqali negatively affected bone ability to produce red blood cells.
I don’t eat red meat, mainly only fish, and take b vitamin supplements.
Glad you’re being evaluated for the trial! But I wanted you to know that your sweet little pup is adorable! Having a little fur baby at home is wonderful. We had lost our sheltie Harley last February and miss him so much. Hugs to you on this next leg of your jou4ney 🙌🙌💪
I've been anemic the entire course of treatment. There are times where my numbers sway according to the Ibrance cycle, I have added B12 and an iron supplement to my daily meds. My numbers are still low, but I feel much better. I'm not a rabbit by choice (veggie lover), so leafy greens don't do much for me. Ask your oncologist to see what supplements may be good for you.
Hi Chris. So sorry I didn't see your message until now. From your update entry it looks like you will have information to update us soon on whether you choose the trial or not. Obviously we will all be routing for you whatever you decide.
As for your anemia....well as others have said depending on the type of anemia most times if you are eating a good solid diet from all food sources then you cannot eat anything more that is going to raise your hemoglobin quickly. It's the Ibrance that's lowered you and now that you are off it, it will slowly rebound. I say slowly as it takes awhile for your blood cells to reproduce mature cells that start raising the numbers.
Another point I want to make is 98 hemoglobin is really not in the parameters where transfusions should be considered. Typically most physicians won't want to do that until you get much lower as there is a universal shortage of blood products and at 98 you are not in danger.
Living with this disease is difficult especially when you are doing it alone. Stevie is adorable but having someone to share your thoughts and feelings with is also important. I am sorry I didn't see your message earlier when you were in need but so many of the wonderful ladies here stepped up for you.
It's ok to be vulnerable and sad at times especially around treatment changes. This is a hard journey we walk, but know that all of us are with you in thought. Take care.
Sister/and Yesss Warrior I do hope/pray you are feeling better. I know your cute little doggie Stevie will keep your spirits up. Rest, and get your D3 sunshine , even if you have to sit by a window with shorts, and a sleevless top on 20-30 minute a day.
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My red cells were really low too and my doc gave me a booster shot. Low numbers make you even more tired and just listless on top of the meds that make us so tired. Protein is important too. I was surprised that mine were low. I too eat leafy greens and cilantro just before my blood work and many times a week. Red meat, extra lean too. Peppermint tea is good too. Hang in there. Sending lot's of warm energy your way. Blessings
Will Start Xeloda Soon
Scan last week showed progression
Changing Meds to Xeloda/capecitabine
Cam you please share experience with Xeloda
