Extreme Pain

[Felish48]

Today has been one of the worst days of my breast cancer life. My pain has been so intense all i can do is cry and pray. None of the pain meds are working. From my thighs all the way down to my ankles. Trying to walk was miserable the pain is so intense. I have a Petscan coming on Tuesday and I'm anxious to know what's going on. I was told that my markers were up, with no clarity. I have a new Oncologist and she ordered a Pet scan. I told her that I had one done in April and she just gave me a look..lol I hope everyone is doing well.

[AnnaChurch]

Hi Felish48, I'm sorry to hear about your day. The fact is I had a bad one too, much like you describe. None of my meds helped...i could barely get up the stairs. I mention this as I just got results from recent scans. They showed nothing in the areas of pain. I wish for you a better day tomorrow.

[Felish48 in reply to AnnaChurch]

Thank you love bug...I hope that you are feeling better.

[13plus in reply to AnnaChurch]

I hope you're both feeling a lot better soon!

[MacroMom]

I'm so sorry to hear you've had such a rough day Felicia, wish I could reach out with a hug and cup of tea! I looked back at a few of your earlier posts. It's always hard to change oncologists but it sounded like your first impression of your new one was positive. I hope she is a good match for you and that the PET scan is helpful. Ibrance seems to work well for a lot of people but like you, I tried it for two months and feel like it did more harm than good. I'm not familiar with Gemzar; my oncologist switched me to Xeloda. I thought your earlier post about getting stronger before starting another drug regimen sounded wise. Getting your pain under control sounds like a first priority. We can't make good treatment decisions when we are distracted by pain. Does your hospital or clinic have a palliative care department? I'll be going to the one at my oncologist's hospital for the first time later this week. I was told they are very helpful with side effects and pain management.

But for now, take some deep slow breaths...trust that your prayers are being heard...take a warm bath if that would feel good....know that you are not alone (we're all here!)...and try to sleep.

[Felish48 in reply to MacroMom]

Awww thank you so much..no they don't have palliative care. I hope that you are doing well. This cancer can be very rough at times.

[Lisa11171]

Hi Felisha, I’m so sorry to hear that. The pain sounds intense!! Are you on Morphine for pain? It sounds like you need it. What are you taking for treatment now? I would definitely try to get an appointment with Palliative Care. Their whole goal is to make you as comfortable as possible and while you wait for the results of the scan, see if you can get an appointment. They might be able to give you some type of shot that could help with the pain. Again, im so sorry. Call me anytime to vent!!

Lisa

[Barbteeth]

I do sympathise with you...I have painful bone mets and some days are worse than others

I’ve experimented with different drug combinations..obviously morphine is best but I can’t deal with the side effects

I take cocodamol and ibuprofen...have an infrared sauna and I soak in Epsom salt baths...not simultaneously!!!

It’s bloody awful living like this but I find my pain is worse if I sit around too much...we had torrential rain in UK last week and I was indoors most of the time and I noticed an increase in pain levels..in fact I just went to bed early as I’m more comfortable lying down...that’s no life

I wish I could give you some useful advice but everyone feels pain differently

Just remembered..I take a small amitriptyline tablet every night which seems to help...maybe ask your oncologist if that may help you

All the best

Barb xx

[Felish48 in reply to Barbteeth]

Thank you..I hope that you're feeling better as well.

[SoCalLady]

I'm so sorry to hear of your pain. I hope it has ceased as of now. Are you taking anything? Good luck with your Pet Scan tomorrow. Please give us an update as soon as you can. Meanwhile, hugs and prayers are coming at you!

[Felish48 in reply to SoCalLady]

Aww thank you, yes the pain finally eased. Sending hugs and kisses your way and I hope that you are doing well.

[Maludagui]

Hello 🌺 I hope your pain has calmed Do not despair. Try to see which of the medicines helps you the most. Alternate different medicines. Tylenol Arthritis helps me a lot with my pain in the hip and I also use hot electric compress, also the salts of Epson. God will be protecting you and you will see that the pet scan will go well. Ten Fe 🙏❤️. We will pray for you 🙏 Above that we are warriors 🎀

[Felish48 in reply to Maludagui]

Thank you and next time i will try these methods. I have epson salt , i didn't think to use it i was in so much pain that i couldn't think straight.

[hopenowandtomorrow]

Praying for pain relief & answers for you! ❤️🙏❤️

[Felish48]

Awww thank you very much and I pray that all is going well for you. I go for the Petscan @ 11:45 not looking forward to it but im anxious to know what's going on inside my body. I will update as soon as I know. Once again thank you for reaching out to me...

[Kimr2081]

Gosh I am so sorry you are in so much pain. Do you know what is causing the pain. I hope you get your PET scan results quickly and hopefully they will be positive.

Prayers for you my friend.

Kim

[Felish48 in reply to Kimr2081]

Thank you Kim2081...I'm feeling a lot better than I was. I go to see my new Oncologist tmr. She wants to start me on Gemzar pending the petscan result. I'm honestly not ready for that , I'm just beginning to feel better now that the Ibrance/Letrozole is leaving my system.

[Kimr2081]

I hope you continue to feeling better and that the Gemzar (not sure what that is) doesn't bring on more issues. It seems its just one thing after another. This week I am just tired of the whole issue, tired of going to the doctor, tired of scans, tired of the side effects and tired of my back hurting (a whole other issue). I have been on a pity party the last few days and trying to pull myself out. Sorry for the dumping.

Take care,

Kim

[Felish48 in reply to Kimr2081]

No problem honey, dump away. I feel you. I cancelled all of my appointments. I'm tired of Drs , getting in machines, bloodwork, i just need a break from it all. I'm putting it in God's hands because lord knows that I'm tired...I hope that you feel better, but its ok to be down in the dumps we are going through a lot and it's very tiring. Feel better soon love...

[Kimr2081]

Thank you!!! It really helps to have someone understand what I/we are going through. I am trying my hardest to put it in God's hands but it is so hard. I have to remind myself daily!!!

[Felish48 in reply to Kimr2081]

Continue to pray, I pray day and night. I have faith and belief but sometimes i wonder because I'm suffering so much...😥

[Kimr2081 in reply to Felish48]

I will and I know it seems sometimes God is not listening and I feel that way too sometimes but I am learning to trust in him and have faith that he is there even in our crappy times.

[Bestbird]

No one with MBC should be forced to experience acute pain that remains untreated or under-treated.

Please tell your doctor that you want Palliative Care. Palliative care differs from hospice care in that you do not need to be near end of life, and you continue to receive standard treatment while on palliative care. Palliative care should be made available to all MBC patients on or after diagnosis.

The material below is from my book (or complimentary .pdf) "The Insider's Guide to Metastatic Breast Cancer" which provides information about approved treatments, symptom mitigation, and cutting edge research. For more information, please visit: insidersguidembc.com/about

Palliative care can reduce symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping.

In fact, the American Society of Clinical Oncology (ASCO) has updated their guidelines to state, “in-patients and outpatients with advanced cancer should receive dedicated palliative care services, early in the disease course, concurrent with active treatment. Referral of patients to an interdisciplinary palliative care team is optimal, and services may complement existing programs. Providers may refer family and friend caregivers of patients with early or advanced cancer to palliative care services.”

From: asco.org/practice-guideline...

Most insurance plans, including Medicare and Medicaid, cover all or part of palliative care treatment. Palliative care is generally available in a number of places including hospitals, outpatient clinics, long-term-care facilities, hospices, or home. Usually a team of specialists, including palliative care doctors, nurses and social workers, provide this type of care in conjunction with the patient’s doctor. Massage therapists, pharmacists, nutritionists and others might also be part of the team. To obtain palliative care in order to manage cancer or treatment side effects, speak with your doctor and/or look up Palliative Care providers in your area at: getpalliativecare.org/provi...

I hope you feel better soon!

[Barb5]

Sorry to hear you are in so much pain and having trouble walking. Are you getting Faslodex by any chance? I ask because I am and I’m having numbness and tingling in my legs. Hope tomorrow is a better day for you.

[Lcranaudo in reply to Barb5]

I hope they are heating up your Faslodex if not insist....it’s a lot easier to administer since it a thick oil and large needle being poked in your butt. I refuse to take these shots unless they are heated up....otherwise my butt and legs hurt for a few days and it’s hard to sit....if the serum is not hot enough for me and not so called room temperature I put them under my armpits till they are my body temperature.....trust me it helps....insist on it.

[Barb5 in reply to Lcranaudo]

Thank you I will ask them about that

[Felish48]

No i was on Let/Ibrance and I'm no longer taking it. Last year i was on Faslodex for a few months and I did awful with that as well. I had the worst period ever. It was extremely heavy and lasted for 15 days and the Oncologist wanted me to keep taking it for one more cycle. I think some of these Oncologists are crazy tbh. My pain has subsided some and I hope that you are doing well.

[RLN-overcomer]

Hello my sister, and yessssss warrior I am grateful that you have had some pain reduction, but I am praying that our Lord/God will deliver you from this pain entirely. I was offline for a few days, but I am praying now. I do pray that joy will come in the morning in the form of no more pain my sister/warrior. Amen Iron sharpens iron I/we are here to interceded on your behalf.

[needabreakfromcancer]

I am curious as to if THC and CBD oil are something you have tried. I know that sometimes they help with pain. I have heard some claim that the THC kills cancer cells. I hope that you are feeling better.

[Felish48 in reply to needabreakfromcancer]

No I haven't tried it, but I've heard it helps a lot of people and I'm thinking of looking into it soon. Thank you for responding to my post and I hope that you're doing well.

[Felish48]

Hello Ladies....I hope that everyone is doing well. I have had a rough weekend, went to the ER on Friday for shortness of breath, Im telling them that im short of breath because I just had breast cancer treatments, but of course they are not listening and wants to max out your insurance by putting you in every machine in the hospital if possible lol. Anyway they did a test on my lungs and legs for blood clots as well as a ultrasound on my abdomen. They did an Ehco test as well and Thank God all of the test came back negative. My CBC was very low esp my red blood count. It was a 2 and my platelets are an 86 , white blood count 389. My Oncologists partner came by explaining that its the chemo and its the price that we must pay to get better in the long run...smfh really?! No one wants to hear that shit. I told my Oncologist last week that i shouldn't get chemo yet because i was just recovering from low CBC from taking Ibrance/Letrozole and she tells me that they were going to give me something to boost my red blood cells after the cancer treatment..LIES!!! I got the chemo injection and the timer of completion went off and the nurses came to unhook me , im like hold up i gotta get the iron. She tells me oh it has a 7 to 11 day PA pending. Wtf!!! So you guys put me in further danger knowing that you weren't going to have anything to boost my hemoglobin...Ive been struggling to breath and the ER says that i have to be a 6 for a blood transfusion, well i dont want one , im trying to prevent that. Had they waited like i said i wouldnt be in this position. I guess they need to make that chemo money...Im ao I'm seriously pissed...😡😡😡😡

[Maludagui]

Hi Felish48🌹 how do you feel now ???

[Felish48 in reply to Maludagui]

Heyyy sweetheart...out of breathe and miserable...🙁 how are you ?

[Maludagui in reply to Felish48]

Hi 🎀💕 Do not say that. We are fighters and we will win this battle. Cheer up. 💕😍 Living one day at a time 🌸. Physically I felt good. A few days better than others. What is very bad for me are the medical debts that are accumulating and I suppose that at some point the Hospital will tell me that I will not be able to get more treatment. I know many will say that there are benefits but I am not an American citizen. I am Venezuelan but already with some years in Texas. I have insurance but I can not understand the medical system. And I do not like having debts. But ... God will provide 🙏. Next Monday I have the pet scan. We will see how I go 🌺🌹❤️. I love this group 🌺 thank you for being here