тнιѕ ιѕ му ѕтσяу ѕσ fαя...... нє ωαяи... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

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тнιѕ ιѕ му ѕтσяу ѕσ fαя...... нє ωαяиє∂; ιтє ℓσиg..... тнαик уσυ ιf уσυ мαкє ιт тσ тнє єи∂!

4DSmommy
4DSmommy

hí. mч nαmє íѕ єrícα αnd í ѕtαrtєd thíѕ rσllєrcσαѕtєr rídє ín junє 2018 whєn í wαѕ fírѕt díαgnσѕєd wíth tnвc. вєtwєєn julч 2018 αnd mαч 2019, í hαd 16 rσundѕ σf α/c chєmσ αnd 4 rσundѕ σf tαхσl, α lumpєctσmч, αnd 21 rσundѕ σf rαdíαtíσn. αftєr ѕurgєrч í wαѕ tσld thαt σut σf thє 6 lчmph nσdєѕ tαkєn αll wєrє clєαn αnd thαt í hαd clєαn mαrgínѕ wíth thє lumpєctσmч wєll, í wαѕn't wαrnєd αвσut єхαctlч hσw αggrєѕѕívє thíѕ cαncєr cσuld вє. í wαѕn't ínfσrmєd σf thє líkєlíhσσd σf rєσccurrєncє. í thσught í wαѕ ín thє clєαr. fαѕt fσrwαrd juѕt α líttlє вít tσ nσv 2018. í єnd up αt αn urgєnt cαrє thínkíng í hαvє вrσnchítíѕ вєcαuѕє ít'ѕ thαt tímє σf чєαr fσr mє αnd ít gєt ít σftєn. thє dσctσr thєrє αgrєєѕ wíth mє αnd вut juѕt tσ вє σn thє ѕαfє ѕídє ѕhє σrdєrѕ α chєѕt хrαч ѕímplч вєcαuѕє í'm ѕσ frєѕh σut σf trєαtmєnt tσ rulє σut pnєumσníα. luckч fσr mє í dσn't hαvє pnєumσníα ríght? wєll, wє díd fínd α 3.3 cm mαѕѕ ín thє lσwєr lσвє σf mч ríght lung. wє αll knσw whαt cσmєѕ nєхt. αnσthєr whírlwínd σf tєѕtѕ, вíσpѕíєѕ, ѕcαnѕ αnd mσrє. duє tσ ѕσmє ínѕurαncє íѕѕuєѕ, í fínαllч αm αвlє tσ gєt thє nєєdєd ѕcαn αnd вíσpѕч dσnє ín mαч 2019. вч thєn, thє mαѕѕ ín mч lung hαѕ grσwn tσ αlmσѕt 10.5 cm. í'm αlѕσ ѕhσwíng α 7 cm mαѕѕ í thє mєdíαѕtαnαl lчmph nσdєѕ. (í'vє вєєn hαvíng trσuвlє ѕwαllσwíng αnd wє lαtєr fínd σut thαt ítѕ вєcαuѕє thє tumσr ín mч lчmph nσdєѕ hαѕ αlmσѕt cσmplєtєlч ѕurrσundєd αnd clσѕєd σff mч єѕσphαguѕ.) mαч 22, 2020 í gєt thє díαgnσѕíѕ í hαvє вєєn drєαdíng. í hαvє ѕtαgє ív tríplє nєgαtívє вrєαѕt cαncєr wíth mєtѕ tσ mч lung αnd lчmph nσdєѕ. í'm gívєn mч dєαth ѕєntєncє. mч fívє чєαr ѕurvívαl rαtє wαѕ αt αвσut 23% αnd thαt wαѕ вєfσrє í hαd α rєσccurαncє wíthín thє fírѕt 5 mσnthѕ. nσw, ít'ѕ mσrє thαn líkєlч gσíng tσ tαkє mє wíthín 36 mσnthѕ. thє єnd σf junє 2020, í ѕtαrtєd α chєmσ/ímmunσthєrαpч rєgímє hσpíng tσ αt lєαѕt ѕlσw thє prσgrєѕѕíσn íf nσt ѕtαrt ѕhrínkíng mч tumσrѕ. fσr ѕσmє rєαѕσn σvєr thє nєхt 7 wєєkѕ, mч pαín íѕ ѕtєαdílч gєttíng wσrѕє untíl σn julч 29 í'm ѕєnt tσ thє єmєrgєncч rσσm ѕtrαíght frσm chєmσ tσ ѕєє íf wє cαn hαvє mч pαín undєr cσntrσl. α ct ѕcαn íѕ dσnє whích ѕhσwєd prσgrєѕѕíσn αll thє wαч αcrσѕѕ thє вσαrd. í hαvє tσ ѕtσp chєmσ tσ undєrgσ pαllíαtívє rαdíαtíσn. 10 cчclєѕ σf rαdíαtíσn αnd í fínαllч rєѕtαrt chєmσ σn ѕєpt 2. fσr ѕσmє rєαѕσn thσugh, í'm ríght вαck σn thє αвrαхαnє αnd tєncєntríq thαt í wαѕ ѕtαrtєd σn αt thє вєgínníng σf thíѕ. чσu knσw, thє σnєѕ whєrє í hαd íncrєαѕєd pαín αnd prσgrєѕѕíσn. í hαvє αnσthєr ct tσ ѕєє íf thєrє wαѕ αnч ímprσvєmєnt wíth thє rαdíαtíσn αnd σf cσurѕє, mч luck dσєѕn't run líkє thαt. mч lung tumσr αnd thє tumσr ín mч chєѕt hαvє nσ ѕígnѕ σf ѕhrínkíng вut αt lєαѕt thєrє hαѕ вєєn nσ nσtαвlє grσwth. thєrє αrє αlѕσ multíplє plєurαl mαѕѕєѕ σn mч lєft lung вєtwєєn thє lung αnd thє ríв cαgє. nєєdlєѕѕ tσ ѕαч í fσrєgσ chєmσ fσr thαt wєєk αnd mч σncσlσgíѕt dєcídєd tσ fínαllч trч mє σn α díffєrєnt mєdícαtíσn. ѕєpt 22, wαѕ mч fírѕt trєαtmєnt wíth hαlαvєn (єríвulín). lєѕѕ thαn α чєαr íntσ thє ѕєcσnd phαѕє σf thíѕ вєαѕt αnd í'm αlrєαdч σn mч ѕєcσnd línє σf trєαtmєnt. í'm nσt єvєn ѕurє hσw mαnч σptíσnѕ thєrє αrє fσr mє cσnѕídєríng thє hσrmσnє thєrαpч вrєαєt cαncєr íѕ uѕuαllч trєαtєd wíth wíll dσ mє nσ gσσd. αll í cαn dσ híѕ put ít αll ín gσd'ѕ hαndѕ αnd truѕt thαt hє knσwѕ whαt'ѕ вєѕt fσr mє. í nσw hαvє tσ вє vєrч cαrєful вєcαuѕє σf thє wєαkєnєd ímmunє ѕчѕtєm αnd thíѕ pσíѕσn kíllíng mч gσσd cєllѕ αlσng wíth trчíng tσ dєѕtrσч thíѕ mσnѕtєr grσwíng wíthín thαt'ѕ trчíng tσ cσnѕumє mє. í'vє lσѕt ѕσ much wєíght thαt íf í lσѕє tσσ much mσrє í wíll єíthєr hαvє tσ míѕѕ trєαtmєnt duє tσ вєíng mαlnσuríѕhєd σr í'm fαcíng hαvíng α fєєdíng tuвє plαcєd. í ѕtαrtєd thíѕ αt 5' 6.5" αnd 196 pσundѕ. tσdαч í wєígh ín αt 122 pσundѕ whích gívєѕ mє α вmí σf 19.52%! í αm ѕmαllєr nσw thαn í wαѕ ín míddlє ѕchσσl. í hαvє nσ nutrítíσnαl íntαkє ѕσ mч вσdч íѕ вαѕícαllч fєєdíng σn ítѕєlf αnd í hαvє lσѕt thє mαjσrítч σf whαt líttlє вít σf muѕclє í díd hαvє. í вαrєlч hαvє thє ѕtrєngth nσw tσ ѕtαnd lσng єnσugh fσr α whσlє ѕhσwєr. σn tσp σf ít αll, í'm ѕtíll α ѕínglє mσm wíth vєrч αctívє αnd rαmвunctíσuѕ 8 чєαr σld twín вσчѕ ѕσ hαvíng thє αddєd ѕtrєѕѕ σf trчíng tσ prσvídє fσr thєír futurє αnd mαkє ѕurє thєч αrє tαkєn cαrє σf íѕ cσmpσundєd вч thє fαtíguє αnd ѕícknєѕѕ thαt cσmєѕ wíth fíghtíng tσ lívє. thíѕ íѕ σnє σf thє tímєѕ whєn чσu rєαllч fínd σut whσ íѕ thєrє fσr чσu αnd whσ íѕn't. αll σf thє pєσplє whσ ѕαíd thєч wσuld вє thєír tσ hєlp whєnєvєr nєєdєd αrє nσwhєrє tσ вє fσund. í hαvє mαчвє fívє pєσplє thαt í cαn cσunt σn σr thαt єvєn chєck σn mє αnd thαt íѕ íncludíng fαmílч. í prαч nσ σnє єlѕє hαѕ tσ gσ thru thíѕ. cαncєr cσmplєtєlч ѕuckѕ thє lífє σut σf чσu whílє mαkíng чσu lσѕє thє pєrѕσn чσu αrє αll αt thє ѕαmє tímє.

29 Replies
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Dear Erica, I am so very sorry to read this. You are really going through a rough time and I hope that this chemo will finally reduce the tumors or keep you stable. Have you asked your oncologist to refer you to a dietician? You need to put nourishment in your body. Which country do you live in? I’ve just been through whole brain radiation therapy and am suffering fatigue and weight loss too. To increase your muscle mass and give you energy, maybe you can try ENSURE GOLD WITH HMB. The HMB is important because it restores muscle mass. You have to drink this twice a day. It comes in powder form and you mix 6 scoops with water. I also drink SUPPORTAN. It’s a meal replacement drink which you take if you don’t feel like eating. Both Ensure Gold with HMB and Supportan have high calorie levels and will help you regain your appetite and help you increase weight. Hope this information helps. I will be praying for you🙏 ❤️Maria

4DSmommy
4DSmommy in reply to MyMiracle13

Hi Maria. I am in the USA. I have never heard of either of those drinks. I've been drinking Ensure Enlive and Boost Plus for about four months now. The dietician and the cancer center i go to wants me to drink at least five a day and that is just to keep me from losing any more weight since both of those drinks are high in protein and calories. My problem is that since there are limited flavors and I've been using them for so long, I cant stomach them anymore. They are making my stomach queasy just to think about them. I mean I still have my appetite. Thats another issue. I stay hungry, i just cant swallow my food without extreme pain, Hopefully this new chemo will start the shrinking of my tumors so eating wont be so difficult. For now, I've been forcing down a few bites here and there when i can but when pudding causes pain there isnt much I can do! I hope you are doing well! Have you been having a good response to your treatments?

MyMiracle13
MyMiracle13 in reply to 4DSmommy

Hi Erica. Maybe the Ensure you are drinking now is the same Ensure Old with HMB I am taking. I live in the Philippines so maybe they call it differently here. I’m sorry to hear that eating solid food causes pain in your stomach. I don’t have pain in the stomach but my appetite is poor. Supportan is made in a Germany and is ready to drink Cappucino flavor. It’s only 200 ml so not difficult to finish but has 300 calories. I will start oral chemo on Thursday so I hope I will get a good response. I will be on metronomic dose of Xeloda (twice a day continuous) with Aromasin (Exemestane). I hope and pray the success of your treatments and that you get the support of family and friends. Let’s keep in touch. 🙏Maria

Dear Erica

I want to wrap my arms around you, hug you very gently and give you soft loving kisses your forehead.

Frances

XXX OOO

Oh, Erica, I hate what you're having to deal with, especially with the two active boys. Wish I were a fairy godmother and could sprinkle pixie dust all over you and all would be well. Guess I'll settle for sending you light, love and prayers for peace and well-being.

Manon

My heart goes out to you Erica and to your boys. The only thing that I can think of is Radiosurgery with stereotactic body radiation aimed directly at your tumors and not healthy cells.. I have had some success with it on some of my lesions. I am not sure if it would help but anything is worth trying. I don't know where you live but there is RSNY in New York City. It may be worth a call if you are in the northeastern US. I have hormone positive cancer but I have a friend with triple negative and she drinks a lot of dandelion tea. I will include you in my daily prayers and will pray that you get the help that you need with your family as well.

Thank you very much. I am in Virginia so im I'm not sure if New York would be feasible for me and treatments now. Maybe if my family didn't move away from there I may have been able to make that work. I have done 10 rounds of "targeted" radiation but it didnt do much by way of shrinking anything. All it seemed to do was keep things from growin too fast but, i did end up with new spots while having it so I'm not so sure it was even worth it. As of now, I have my fingers crossed that this new chemo actually does something productive so to speak. Wednesday will be my second infusion so its still too early to tell but i'm trying to look on the bright side.

Erica,

I am rather new here, and am at a loss for words at how much you are dealing with..

Sending care and concern for you and yours. Your telling of your story touched my heart

I am sorry that you have gone through such an ordeal.....

4DSmommy
4DSmommy in reply to Mary115

Thank you for taking the time to read my post. I hope you are doing well with your treatments and your journey so far. Even if I wouldnt want anyone to have to take this walk! Positive vibes and healing prayers for you!

Dear Erica -

I'm incredibly sorry for what you're dealing with...my heart breaks for you and goes out to you...

While it's so disappointing when people we expect to be there for us aren't, really all you need is a couple of or few good ones...I do hope you are able to find the support that you need.

We on this community will be here for you, from afar (far and wide...) but that doesn't help you with the day to day matters. I hope that you have no hesitation to ask for what you need...

My very best wishes for you and your family...Sending love,

Lynn

Sorry to hear all that you have been through. Where are you getting your cancer care? Do you have options for a 2nd opinion? Or changing oncologists? It may give you validation & peace of mind about the alternatives. ❤️🙏❤️

I live in a very small rural part of Virginia and my treatment options are limited. What makes it so bad is this is my 2nd oncologist. The one I was seeing with my original diagnosis told me not once but twice that the spot in my lung was not cancer and that if it was anything at all it was benign. Not only was he saying this looking at the same reports my surgeon was while saying this but, his specialty is suppose to be breast cancer! After that, there was no way I could put my life in his hands. I am currently with the UVA cancer center but it is kind of like a satellite office. Its a lot closer to me than the main hospital but they are all suppose to collaborate and work together. I am seriously thinking of switching doctors again though. Sometimes i just dont feel as if my doc even listens ti a word I say! There is one other place that is within an hour of me. I'm kind of worried that if I keep changing doctors something is going to get overlooked or missed! So, for now at least, Im hoping and praying that I have a positive response to this new chemo. I have my 2nd infusion this week so it is still too soon to tell but I feel like I have to grasp at something.

It breaks my heart hearing this. But you came to the right place to vent. So much so fast for you. I am assuming you just have no appetite. I had bc b4 when my kids were 8 and 10 yrs old. Stage 2B. I cannot imagine how hard it must be on you and I will be 5 yrs with Stage 4 in February God willing. Praying for you and your family. I have literally almost done this by myself. Only one daughter ..no other family and another daughter moved back from NYC but I live alone and do not see them all that often. Big hugs. And btw I love your font.

Hi Erica: Glad you have found this site. What an incredible journey you have been on! And without a lot of support. But you have one wonderful person to support you and that is yourself. To having the experience you are having and still be able to reach out to us is showing some amazing strength.

Hello Erica: So sorry to read about your journey thus far but glad you have found this site. You have found a group of wonderful supporters.

You said you haven't much support but thank heavens for the five and you have the support of one other really great person and that is yourself.

To have travelled through all the treatments and still have the strength to reach out to us is incredible! You are so strong. That is a wonderful thing. I admire your strength!

Hope some of the hints you find here will be of help. Just know we are thinking of you and wishing you a turnaround soon.

Cheers, June S.

Oh, Erica, I'm so sorry you've had so much thrown at you so quickly. I wish I had easy answers, but I don't. All I can tell you is that if you don't have complete confidence in the treatments recommended, try to get a second opinion from an oncologist at a major cancer research center. Don't know where you're located, but there are good options in many areas of the U.S. (Baltimore, NYC, Boston, Texas, and more. MD Anderson has partner sites in several areas). You might want to check in with the social worker at your oncology practice to see what other resources are available to help you. I do know that there are programs that provide cleaning service for patients in treatment, short getaways for self-care, etc.

This forum is a good place for information, support, and solidarity with others walking this path. Sending a gentle cyber hug, good energy, and prayers.

I may have to look into some of those places. Especially when it comes to some help around the house. These boys of mine are definitely not much help with the house and cleaning things and I'm just so worn down and weak I can't do it like I should. I have tried to reach out to the social worker at the cancer center and she was suppose to look into a few things for me and get back with me. Well, that was about eight weeks ago and I'm still waiting for a call back. It's like everyone there just shoves us to the back burner and forgets about us! I wish one of the larger centers were somewhere close to me. Unfortunately, I live in a very small, rural part of Virginia and there really isn't anything within about 8 hours or so of me!

Oh Erica, I'm praying for you. Seeing a nutritionist might help.

Wish I could be there for you and your little boys.

Hugs and Love,

Ma

Hi Erica!

Praying this new line of treatment works for u...I also pray for your nutritional needs...Learning what nutrition works for u would make the world of a difference...Are they giving u any nutritional drinks like Ensure to help with calorie intake?

Prayers! 🙏🏻❤️🙏🏻

4DSmommy
4DSmommy in reply to Rhwright12

I have been on Ensure Enlive and Boost Plus for a little over 4 months now. I have to drink at least five a day and that is just to maintain the weight I'm at now. The problem with that is, I've gotten to the point where I can barely stomach them anymore. The flavors are so limited and they get really old after a little while. My stomach churns a little at the thought of them, Unfortunately, I'm hungry. I stay hungry I just cant swallow because it causes such an intense pain.

My heart goes out to you. I just want to come get you and your boys and take care of you, you are one strong woman and I will pray for you

My heart breaks for you. The only thing I can add is your son's father involved in their lives? Possibly he can give you some breaks when you need it. Another thing is be sure and ask people for help. Most people want to help but they don't know what to do unless you tell them. Also, if you belong to a church, let them know that you need someone to bring meals. What state do you live in? Contact Cleaning for a Reason. You are in my prayers. You need a good person in your life. Many blessings, Hannah

4DSmommy
4DSmommy in reply to hdhonda

I have never heard of cleaning for a reason here in Virginia but you can best believe I'm about to look it up, Thank you for the suggestion. Unfortunately, I am one of those people who let themselves get so caught up in life that I neglected the spiritual aspect of my life and I havent been inside a church in years. Something that I need to work on fixing thats for sure. Luckily the school my kids go ti is wonderful though. They have someone who has volunteered and she brings us 2 hot meals a week which really does help out a lot. Other than that, its pretty much all on me. My family isnt close at all. If it tells you anything, my mother lives about half a block from me in the same neighborhood and I cant even get her to help me with the boys on the days she doesn't work! I know. It is kind of sad. As for the boys, they dont even know their sperm donor. They know him by his first name but thats it. He has seen them a total of 7 times and every time was because I put firth the effort and took them to him. He and I split when i was 4 months pregnant. Right now I would just be content if he would get a job and pay his child support but thats a story for a different group! 💁😡

Dear 4DS,

Cleaning for a Reason is a national organization. That is so nice your sons' school has gotten a volunteer for you. You might want to contact the American Cancer Society and Susan Komen. They may have some ideas. You don't have to go to church to pray. Just invite God into your life. I wish you the best. Blessings, Hannah

Hi Erica

I feel so bad for you, I cannot imagine how hard it is to be on this journey with two small children.

I was diagnosed July of 2016 at stage 4 mbc. I was sent to a cancer center in Newark NJ. Tried many different treatments trying to keep it under control.

Started IV chemo in Jan 2019. Taxol, Abraxaine, Genzar etc. was always vomiting and diarrhea, mouth sores. Weight loss no appetite, a few hospital stays. Finally as I was in hospital in my town I was tired of the fact they could never reach my doctor for instructions. I started asking my in town doctors and was told there was an oncologist in my town. I met with her a few times while in hospital and she had a different few of how I should be treated. She did not agree with me having Chemo every week, too much for my body. She said I could not be cured but she could give me a way to have a life without hospital trips and being in bed all day due to chemo. She has worked with Halaven before and thought that was the one for me. We had some problems moving my insurance to a new doctor and has been treating me with another chemo.

She has been treating each side effects as they come. She found that all the vomiting and diarrhea was caused by mucosa which she said I have had for a long time, she has me on nystatin to prevent mouth sores.

I have not been sick for two months which is great. I have chemo two weeks on and one off.

I am finally starting Halaven tomorrow as she really wants this one. Then I will have pet scan to see if it is keeping my tumors down or killing some.

So I hope the Halaven works for you. Maybe this will be the one. I will be thinking of you often and looking for your posts. Halaven is two weeks on and one off, only take five minutes to administer. I used to spend the whole day at the clinic now I am at her office about one hour. I finally have a life. I pray Halaven works for us both.

Sorry I took so long

Barbara

Barbara, I'm so glad you've found a great doc and that you've been feeling better! And I am so hopeful that the Halavan works well for you! :)

Take care, be well, Jerseygirl!

Lynn

Dear Erica I’m sorry to hear this . Where do you live and how old are you? If it’s triple negative negative breast cancer I had a friend who had this . I understand there are treatments but sometimes the response is not good. My heart goes out to you and I pray that you have support around you. I hope your pain is relieved and try to drink some supplement to help with weight loss . If you want to talk I would be happy to anytime and you can ask me for my number. My mbc is different so treatment is different but I’m a really good listener. I know that you will need to be strong for your 8 year old boys. Fatigue and pain always the problem to keep going-no energy. I hope your onocologist can help you with another treatment and maybe support of some kind. This forum is the best-all of us trying to stay alive. I am praying for you-🙏❤️

Dearest Erica,

God bless you as you prepare for your infusion this week. My heart aches to read your story.

One thought: If you decide to switch to a new oncologist, I'd prepare a chronology of your treatments (i.e. what treatment and its start/stop dates), along with a copy of your most current blood readings. Collect all the summaries from any and all CT or PET scans. Have this information ready at your first appointment. An experienced oncologist should be able to determine what is your next best treatment.

You have all my love and prayers,

Linda

XXOO

Erica,

This is breaking my heart.I just want to come hold you.i have no words 603-520-7724 is my # if you need someone to talk to and where do you live.. I know everyone on this blog will be there for you but not in the way you need.you must need help with boys..call the cancer society they have help..you are in my prayers now again no words

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