Triple neg / stage 4 lymphedema / fear/ pain/ anxiety / losing hope

[ack2049]

I'm diagnosed stage 4 triple negative br ca from the start in Jan 2015 - given 1 yr to live without treatment and 3-5 with treatment.I've burned through a lot of treatments - 3 trials and recently I've not had any luck with the last few chemos - did many weeks of radiation - and had to stop working sept 2017 when I realized I hadr mets to brain - had 2 gamma knife surgeries - but brain mets are back and thr recommendation is for whole brain radiation - at this time ivwas on Keytruda ( got through compassionate use as insurance wouldn't approve) as the dr only gave he a few months with treatment and maybe a few more with whole brain radiation I opted for a wait and see and let's try another treatment. I have considered hospice but I am only 50 and have 2 boys who just turned 14 and 16 and I'm so scared to die. I am just in slot of pain from this lymphedema in my right arm which makes me take dependent on other people now

And o gave family and friends with me 24/7 as it has been just me and my 2 boys until a few weeks ago when my breathing became worse and I had to go to ER to be admitted and get my lung drained ( very new ) then a week later I was admitted with severe pain from lymphedema ( which I had been told nothing can be done ) during the second admission they found a blood clot and I was treated for this and to get my pain in better control.

After this I went to see a lymphedema ( vascular ) specialist at NYU to see if anything else could be done. I also started Navilbene and affinitor and was supposed to be three weeks on and two weeks off -2nd week platelets were low but we gave anyway and platelets came back but I have WBC count of 0.5 so we will try again next week - I still have such pain from severe lymphedema and my arm just seems to be getting worse - I feel if I could get this lymphedema under control my life would be so much better - it's a catch 22 -

Does anyone have any suggestions re: lymphedema , pain, treatment , fear, anxiety, brain mets, trials - my energy to research anything is almost non-existent and I'm losing hopeW

[Dartyus]

So sorry that you have to go through this, I too have Triple C negative. I also had brain mets which were successful treated for now thank God. I also have lymphedema in my right arm. I am wearing a compression sleeve for the swelling. I want you to remember that all things are possible with God. Don't give up the fight. We are all in this together. I will be praying for you and your family. Your sister in Christ. Sending love and blessing your way

[ack2049 in reply to Dartyus]

Thank you Dartyus - can I ask what you did for the brain mets ? I've been waiting to see if the chemos work - not sure if I can handle whole brain radiation - the gamma knife was ok but I am no longer a candidate for that

[Dartyus in reply to ack2049]

I had brain radiation.

[ack2049 in reply to Dartyus]

How did you feel during the full brain radiation? The neuroncogist said it would make me extremely tired and effect my memory

[nstonerocks]

I have nothing along clinical lines to share but I feel your fear and anxiety and can only imagine the kind of emotional storm you are going through. There are many drugs to help with this and if your onc cannot help perhaps she or he can refer you to both a pain specialist and a psychiatrist to manage this part of your suffering. Are you a person of faith? If so, time to lean on your clergy person. This disease sucks to the core and we all live with such uncertainty along with the symptoms and side effects. Let others take control of the tasks around the house, meals, etc. While I am not in your exact situation, I almost went crazy with fear and depression. It was too much to handle alone or even with well meaning loved ones. If you have a good onc that you can talk to freely I’d start there. I have been in therapy and on some meds from the get go. I have sought out things that help me deal with and accept this diagnosis. It’s ongoing and a process. You deserve and need to feel less stress and pain. I will keep you and your boys in my thoughts. Please stay in touch.

[ack2049 in reply to nstonerocks]

Thank you - I have reached out to my rabbi and she has been to my apt to visit and has given me her dirwctc#. She is very comforting. I am going to be talking to another palliative care specialist as although my current palliative care specialist is very nice we are not on the same page. I do like my oncologist but there is only so much he can do. I this helpful to hear what helps other people . Thank you for the support and I'll keep you in my prayers also nstonerocks

[Selmac]

ack2049. There are way too many women going through this. I have no words tgat cans help. I will be praying for you and asking God to give you peace and comfort.

[ack2049 in reply to Selmac]

Thank you Selmac

[HopeinNJ]

I will keep you in my prayers.

[ack2049 in reply to HopeinNJ]

Thank you Hope in NJ

[PatSailsbery]

I am pleased that your Rabbi has made herself available to you and is a source of comfort. You are doing the right thing in reaching out to your palliative team to switch your provider to one that is a more comfortable fit for you.

I, too, suffer with lymphedema and have had cellulitis several times, which is very painful. I have found relief with compression garments and massages from a lymphedema specialist. Also, my insurance paid for a Flexi-Touch, which is a compressed air massage system. For more information, click on the following link. tactilemedical.com/products...

Because you are young, at 50 years old, and you have two teenage sons, if I were you, I would try to press on before contacting hospice.

I believe we, as cancer patients, must always have hope despite how grim it might look to the medical providers. I was diagnosed with Stage 4 Breast Cancer in December 2012. I have had many bumps in the road but continue to press on for my adult daughters, my granddaughters (2 yrs. and newborn), their spouses and my husband of 36 years. I have felt like giving up from time to time but that is so final.

At the end of the day we need to make decisions based on our individual needs physically, emotionally and spiritually. May God give you peace and comfort at this particularly difficult time in your journey with cancer.

[ack2049 in reply to PatSailsbery]

Thanks for this

[BeckyHobson in reply to ack2049]

I am praying for you that you receive relief from the horrific pain and discomfort you are going through. If you can find a way to get beyond the time frame numbers that have been handed down to you, I think you will find some peace. Tomorrow is a new day as is the next and the one after that. I hear how much you have to live for 💕. Try to stay positive and make liars out of the doctors that are tossing those dates at you. God is with you always 🙏

[BeckyHobson in reply to PatSailsbery]

Very well said. It upsets me when doctors feel the need to tell us how long we will or will not survive?? I say Bull!! That date will be decided between myself and God.

Attitude is everything with this stupid cancer. I was 34 and a single mom of a 6 yr old daughter when first diagnosed with stage 2B breast cancer in 1999.

Sheer willpower, Faith in the Lord, and a nothing can stop me attitude got me through it that time and I intend to be chatting on this blog 10 years from now when I hit the 12 year mark. Thank you Pat!!

[spouseM]

I am so sorry for all you are going through...so so heartbreaking. I have a meditative practice. I feel it helps with all things, including pain and fear reduction. Look in your area for a meditation group, sangha is generally the term used for such a group. This is not tied to any religion, so not to worry about loyalty. I suggest you get together with others because they can offer you individual help in practicing; however, anyone can meditate at any time on their own. Look on line for short videos if this is your preferred way. My very best to you. Michelle

[RLN-overcomer]

Greetings : Sister/ack2049 I pray Dr/ God will restore you. How does my prognosis of one

year to live ,only if I had aggressive treatment turn into almost 10 years NED without

pharmaceutical drugs after chemotherapy, and radiation? There is no question in my entire

being it is/was GOD !. I admire how hard you are fighting through every challenge.

God is your advocate, and you are surely runner up. You are doing your part, and God will

do the rest. There are so many wonderful testimonies on this site and,whether you know it

or not you are a strong WAAAAAAAARIOR. What doesn't break you will make you stronger.

Keep your hands up in prayer and praise. Amen XoXoXoXo

[cocacolagirl25]

I was diagnosed with triple negative breast cancer in august of 2015. I went through chemo, radiation and surgery. In December 2017 I was diagnosed with a local reocurrence. I gave in and went to Cancer Center Treatment of America. They put me on Xeloda. I also went whole food plant based diet and my arm lymphodema went away with alot of my pain. My local oncologist told me there was no correlation. Cancer Center Treatment of America was very encouraging. I am only in my first week of the xeloda and have alot of side effects.

[ack2049 in reply to cocacolagirl25]

Cocacogirl25 I am happy to hear your lymphedema went away. Your story is encouraging. I am sorry you are experiencing side effects from tythe xeloda.

[Meadesmith]

There are lymphdema centers, usually connected to a physical therapy center. There are a lot of things that can be done to help you. I am starting a massage and stretching program next week. Also get professional help with a compression garment. You are not the first to have this issue, there are people who can help. There is treatment..there is hope. As well as you are not feeling, unfortunately you have to find the best treatments for yourself. Lol the next time someone asks if they can help...ask them to research lymph demand treatment. Someone helped me today with finding a new compression garment, a task I found overwhelming.

[Ibelong]

I hope you lose your pain, fear and anxiety while yo never lose your hope.