Hi, all. Well it finally happened! I broke down in tears in front of my hematologist. I always prided myself on my independence and my ability to handle almost anything that comes my way. But my illness finally got to me. She told me that I have to start coming in weekly again for my EPO injection to treat my anemia. I am just so tired of feeling so weak and unable to fully function and enjoy life. My partner is very understanding but he is full of energy and I feel terrible that he has to do so much for me. My sister had major surgery last month and is having her own health issues, so I worry about her, and my friends are busy with their own lives. I’ve never been a “woe is me” type of person, so I’m so sorry for my rant.
You’ve all been such a wonderful support system. Finding this site has been a godsend. Thank you for being there for all my ups and downs.
Best wishes,
Cindy
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Aww, Cindy. No need to apologise, that’s what this group is for. You’ll feel SO much better when the anemia’s being treated, just try to hold on to that. It sounds like you’ve had Epo before, how was it?
I’m going through a similar scenario myself and have found the anemia one of the hardest things to manage. To me it feels like I’m wearing a onesie made of icy water, unable to catch my breath, crawling upstairs on my hands and feet, carrying constant light-headed dizziness, tinnitus, numb digits, back-to-back migraines, strange visual and audible hallucinations, etc... after having a transfusion to tide me over, I’m going in to talk about epo next week 🤞🏽
Please keep us posted on how you get on. Take care,
Lucy (PET MF, JAK2+, 41yo with no other comorbities and in good shape apart from my MPN...)
Hi cindy I am sending you a big hug it’s best to let your emotions out sometimes tiredness is horrible thing and I hope the EPO injections help you you rant any time on here we all understand I hope you feel better soon and your sister as well.Best wishes Poppy
So sorry to hear about all of your symptoms. It sounds horrible. This disease can be so challenging. To answer your question about EPO injections, When I got diagnosed with post ETMF in 2019 I had progressive anemia. My Dr. put me on EPO injections right away every week for about 4 1/2 months. My hemoglobin went from 8.6
to around 10.9. The injections don’t hurt at all and they really helped. My hemoglobin has stayed stable since January 2020 until recently. I also take Fedratinib and Hydrea.
Thank you for your reply, I’m so glad you found the Epo helpful. Hopefully you will have it soon and start feeling better. Blame the anaemia for feeling tearful, I do 🧡
That’s Bril news for you although I thought your anaemia had to be in the 7s before EPO was administered as I’ve queried having it. My levels have gone down to 93 rarely going above 100
Oh Cindy, the stress of MF is just overwhelming isn't it? Absolutely no need to apologise, you are not ranting, just sharing your pain with us and we understand. About EPO, I have just started it too but am injecting at home. Is that an option for you? I have had to buy a home blood pressure monitor but it seems easy enough to use.
My husband does a lot for me too - I can do light housework but he does all the strenuous stuff and all the cooking (he loves cooking though and is much better than me!)
I do hope things go well for your sister, worry about our loved ones adds an extra layer of stress.
Keep asking for support here when you need to; you are always supportive when others need it and we all look after one another xx
Thanks so much, Jennie, for your kind words and your well wishes for my sister. That means a lot to me. So, My hematologist also wants to monitor my labs every week so I have to go and get my labs done at the same time as the EPO injections. So I can’t do them at home even if I wanted to. Then in a month I will have a visit with my hematologist.Do you feel any better with your EPO injections? I hope so. I’ll be thinking about you.
Tears are just stress leaving the body. It builds for all of us. Best to let it out when you need to. Just stuffing your feelings never works out well.
I sounds like you have a better treatment plan in place. Hopefully you will feel better if the anemia is better controlled. I am sure you are already working with your hematologist regarding the rest of your treatment plan. If I remember correctly, you are on Inrebic, which can cause both anemia and extremity pain. If the EPO does not help enough, there are other options that could help.
Hang in there my friend. Please stay in touch. Sending lots of 💛💙💜🤎🧡 your way.
Thanks so much, Hunter. Yes, you’re right. I have been on Inrebic for nearly a year and a half now. But my hematologist does not want me to stop it. In fact, she increased it when my platelets were out of control two weeks ago. It’s always been my least favorite medication because it causes the most fatigue. Anyway, thanks again for your support and kindness. It means a lot to me that you care so much. You have helped me so much already.
I hope you also are getting things straightened out on your end. Take care of yourself.
You are most welcome. I hope you get the anemia/fatigue sorted out soon. I know there are other options for supportive care when myelosuppression results from chemotherapy. It just needs to be targeted correctly.
I am doing well all things considered. Got the first batch of labs for the kidneys back. The labs looked better, with eGFR back WNL again. The ultrasound does show some abnormalities. Will have to review with the nephrologist to see what it all means. I am thinking her theory may be right. Some of the drugs I have used in treatment may have damaged my kidneys; however, it may be that the impact is mild. That would certainly be preferable to a progressive kidney disease.
I will be starting the Pegasys as soon as it get approved and the med is shipped out. Another MPN adventure and learning opportunity!
Thanks, Hunter. I really hope that the medicine hasn’t damaged your kidneys too much. I know that could be a side effect but you seem to have a wealth of knowledge about so many things and are very proactive, so I’m sure you’ll get this all worked out. Keep us updated on how the Pegasus works for you. I really hope it helps.
It’s always better out than in Cindy! I think we can do ourselves a disservice sometimes by keeping up a brave face, it’s great that you’ve let your haematologist see how much you’re struggling and that you’ve now got a plan for treatment.
The anemia sounds really rough, it’s awful that you’re missing out on really living your life at the moment.
I’ll be keeping everything crossed that the EPO gives you the boost you need 🤞🏻💚
Thanks a million, Sarah. Your support is so appreciated. You’re probably right about letting my doctor see my true self, even though it was a bit embarrassing. Take care,
I completely understand and hopefully your doctor did, also. I know that the weight of everything we carry can be quite difficult to balance every single day; day after day.
I am hoping that you will get a second wind to help get you through the EPO injections. I am sending you and your sister healing energy and positive thoughts! Take good care of you!
Being low on energy is a bugger... I am well aware of those issues too... However, EPO will certainly be picking you up again in no time... Keep smiling...
Hi, I’ve always hated it when doctors make me cry. Usually it’s because they’re being disrespectful & I don’t have the guts to speak up. Being willing to cry for the reasons you did is a sign of strength. I’m impressed that you let yourself cry in front of your doctor. And that’s actually doing her a favor by making you a real flesh & blood person with feelings; reminding her that these health problems are really hard for patients. Doctors can forget that if they don’t see patients emotional pain. And try not to feel bad about your partner having to do more. You know if the situation were reversed you’d do the same thing. And I suspect you give in other ways, love, appreciation & emotional support. It happens to older people when one partners physical frailties are greater. We’re the same, it’s just that we’re younger & our cancer causes the need. Frankly I’m super impressed with how strong you are. Take Care & please give yourself credit for how well you are handling it. Katie
Thank you, Katie, for all your encouraging words. It was very uplifting and appreciated. And, you’re right, I’ve been there for my partner several times over the years for his own health issues, which sometimes, I think he forgets. I hope you are doing well.
I know that feeling . You don't want to be considered soft. But this is only human. In 2014 at thé start of my diagnose I also felt strong until the doctor asked: how is it with our Christel.... Tears...
Hi Cindy, I do hope they get you sorted soon and Hunter is right it’s the pure frustration of it all! But thank goodness for this site I for one would be totally lost with out it, being diagnosed in lockdown so grateful & thankful for everyone’s help on here! Big hugs and best wishes to you & everyone we all have our own struggles everyday and so good to be able to let it out with people that understand 🥰
Thanks, mustang. Sending hugs right back to you. I agree, I couldn’t have gone through this year without this site. It’s the first thing I do every morning when I wake up is see who posted on the site. It’s an extraordinary support system. Thanks again and I hope you are doing well.
hi Cindy, you don't need to apologize to us at all, you are dealing with so much so really not surprised that you got overwhelmed. I really do hope that the EPO injections make you feel better and give you more energy. I also hope all goes well for your sister and that she makes a speedy recovery from her surgery.
Hi Cindy, I cry half the time during my phone calls or appointments with my consultant. I was a health professional myself before I retired and I can assure you many many people cry at such times. There is nothing wrong with crying; it is a good way to release feelings. Big HUG xx
Thanks, Faith. After reading many other posts on here, I understand that it’s probably OK now to let my emotions out a little more often. I have been hiding them for so long. It feels good to know that so many people on the site understand what I’m going through. Thanks again and sending hugs back to you
I’ve broken down a few times I. Front of my nurse/ haemo. So I now feel grateful I’m not alone. You have it tough. Weekly EPO, what is your MPN and haemoglobin level? That’s if you don’t mind telling me. I totally understand what you say about other people and their issues it’s hard to find someone to turn to hence this site 😀😀😀Is so valuable.
I am post Et Mf, diagnosed with Et Jak 2 in 2008 and Mf in 2019 when I went to an mpn specialist. She thinks I probably progressed to MF earlier based on my records. My hemoglobin then was 8.6. After 4 and1/2 months of EPO injections, my hemoglobin was in the upper 10’s and she stopped the injections. I’ve been stable all this time. My hemoglobin was actually normal the last few check-ups but it dropped to 9.6 at my last check-up. I’ve had other issues going on in the last couple months with my sciatica and herniated discs, so she’s not sure if that’s causing my I hemoglobin and other numbers to react negatively.Thanks so much for your encouragement and understanding. You’re right, It is very hard to find people who understand what we are going through.
There's no shame in crying at all, I always see tears as a release and often feel very much better after I have let it out. Took my husband a while to realise that having a few tears is "just my way" but now I don't ever apologise for crying. Embrace your emotions, that's what makes us human!
Thanks for saying that. I still have a hard time crying front of my partner because he is so strong. His dad was in the army and he was taught by both his parents that crying was a sign of weakness. He is a problem solver and he’s been very supportive of me and my illness since the beginning.
Hi Cindy. Don’t worry about crying in your consultation , we are strong with our family and friends not showing our emotions, but whilst in consultation with the doc who decides what we do and what meds they deem the best for we are feeling very vulnerable. I too have had a break down in that situation. But it was a release of pent up worry, wondering if they are prescribing the right thing etc. So this helps them to hear your concerns and fears. I haven’t had a cry in consultation since then. I think (if of course your consultant is empathetic and understanding ) it actually improves your relationship.
I self inject EPO once a week it has definitely helped with my anaemia which made me so fatigued and less able to cope day to day. I feel so much better, I also take iron tablets which I know also help me. I do hope you can get on top of your anaemia , then you will feel so very much better emotionally and physically .
Thanks so much, Sandy. I’m so glad the EPO and iron are helping you. I trust my doctor and I’m pretty sure she’ll get to the bottom of this. Be well. So nice to know we’re all here for each other.
Big hugs Cindy. We all fully understand how you’re feeling just now. You have so much to contend with. It’s good to have loving support from your husband. I know as mine does all the cooking too(fortunately he likes it). I’m sure you’ll feel better when your EPO injections kick in and send wishes for your sister’s quick recovery. ❤️❤️ Fran
Thanks so much, Fran! I agree, it’s important to have a supportive spouse. Mine has been doing all the food shopping this past year and we try to make simple meals. I do try and cook a nice meal once a week if I have the energy and we have leftovers for a couple days after. Thanks again for your kind words and for your well wishes for my sister. Be well, Cindy
Sounds to me like tears were in order. Stoicism is overrated and even damaging at times. I suspect that doctor's are very accustomed to tears.
You know that if it were just the one thing you would be able to get through it, but when they pile up on you like a ton of linebackers, well crying is perfectly reasonable. It is a society that says suck it up that is out of line. I started crying in my dentist's office when I cracked a tooth in the same year my mother, my brother and my dog were diagnosed with cancer.
Wish I could give a glowing joyful report, but last year and the start of this year was pretty tough. My Mom and dog passed, my brother is still fighting. He has come down with yet a third cancer (in 7 years) that needs chemo/radiation treatment at the beginning of this year and I found out that I had ET in January.
The rest of the family is thriving so all is not gloom and doom. Things are fortunately improving.
I hope your sister is recuperating well and that your doing better as well.
I’m so very sorry to hear about your mom and dog. That’s almost too much to bear for one person . I hope your brother pulls through his latest challenge. You have been through so much. My thoughts and prayers are with you. 🙏🏼🙏🏼🙏🏼 Sending virtual hugs. I am doing better emotionally. You and the other people who responded to my post have helped me immensely. Today I go for my EPO injection and lab work. My sister is getting better day by day.
Thank you. I hope you feel better soon! and I am glad to hear that your sister is improving as well. This site has been so helpful to me also. I am so glad it is here.
Hi CindyThe anemia will make you feel tired & washed out - as Lucy says, you will start to feel better soon with treatment! Lots of luck & I guess your doc understood why you were so tearful! Try & have some time with your partner - just the 2 of you..
Hi Cindy , , as the other good folk (notice how I sneakily put myself in that category) on here have said there's absolutely no shame in shedding a few tears when things get on top of you. And as Katie pointed up it can have a positive impact upon those in whose presence those tears are shed and reinforce that human emotional element which can feel like it's missing at times and you're just another case number.
As part of my MF care at my local hospital Haematology Unit I took up the offer of some Complementary Therapy by way of weekly hourly Reflexology sessions which I found hugely beneficial in relieving stress.
The other thing I took up was the offer to see one of the Clinical Psychologists with whom I could share some of my fears that I wouldn't want to burden my wife with. It's a non judgemental counselling service and you work together to try and find solutions to move you forward if need be but the onus is on you to plot your own path perhaps making a few simple changes like buying new clothes, having a haircut or trying a new hobby. But mainly they listened.
Remember Cindy, your soul would have no rainbow if your eyes had no tears to cry. . . .
Thanks, Chris. Those are some really great suggestions. I especially like your last line and it really spoke to me. I also understand about burdening one’s spouse too much, because they already have so much to deal with. I have tried therapy in the past a few years ago and I cried the entire session. My partner always says to me that whatever affects me affects him. So that’s why I tried therapy and it did help, Maybe I’ll try it again. Thanks again for your support. I greatly appreciate it. I hope you are doing well.Regards,
I am a very strong person and usually become even stronger when the challenge grows. Lots of challenges makes us grow and grow stronger. But!
There are times when we have to cry (a lot) and admit that we are only human and we are not invincible. Let go, allow yourself to be taken care of and do not be ashamed of that dear one!
I’m just coming out of a similar situation. I’ve had a really rough time since last summer as we finally got a plausible diagnosis for our 17 year old daughter, whose been suffering and getting worse for years: 4 strains of Borreliose coursing through her body plus chronic EBV and chronic strep. I went through hell digging up the right doctors for years and all culminated in the winter. Well, I forgot about my own health, since last summer and my thrombocytes exploded and were shifting all over the place for 8 months. I had a neck accident in March, with pain worse than my gall bladder colics! and so many other things fell upon me. My fabulous haematologist was out for three consecutive visits and I met with two others, who tried fear tactics to make me shut up, when I wanted to discuss things. I was terrified. I used to think I was the rock of Gibraltar regarding facing doctors.
For the first time in many, many years I felt completely hopeless and was about to give up.
Today, my thrombos were finally far out of the danger zone and my neck is finally better and I can finally sleep. We finally see light for our daughters health too. My house still looks like a war zone. But Things are better.
You will also move on again and feel better. We’ve all been through times like these and understand you so well. Think of you and let others carry you. This is when the good people in our lives stand up front and are happy to help. If you’re religious, please call on our father above. Stay away from anything negative. Try to laugh. We’re watching Mary Poppins right now! Do Whatever You need. 😘
I will pray for you and your physical and emotional health Cindy! Please let us know how you’re coming along.
Thanks so much, Anag, for your reply. I’m sorry that you went through such a difficult time with your family last year, and then also having to deal with your own health issues and incompetent doctors. There’s nothing worse than having a sick child and being frustrated in finding the right doctors for her. I’m certainly glad that things are getting better for you now.I really appreciate your words of encouragement and your prayers. I do need to lift myself out of this mood and the wonderful people on this site, including you, of course, are helping me towards that goal.
So glad that I helped! I’ve been lifted up by other often here. So great to be a part of this family. Yes. Having an ill child is heart wrenching. But, we’re getting there. 🙂🙂
Hey Cindy, we are always here for you. Crying is a fabulous stress reliever. I often shed a few tears when feeling discouraged at how exhausted and weak I have become over the past 11months. I then give myself a “pep talk” and tell myself how grateful I am that I can accomplish all that I do. There is ALWAYS someone worse off than me and I just thank God for the health I have in the here and now♥️🙏🏻😊
Cindy, you are not alone, I found this site exactly that, a God send. It can get to all of us sometimes and there is always someone here t pick you up. I hope you find as much comfort here as I have. Sounds like you’re having a really hard time so just let it all out we’re here for you as much as we can be and some people one here are angels. Chin up tomorrow’s another day , keep well. Xx
Hi, Lucy. Thanks so much for following up. So when I went for my labs last week, My numbers had stabilized by themselves. So I didn’t have to have the injection after all. I do appreciate so much everyone’s support. I still feel overwhelming fatigue but I think it’s just something I have to live with.
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