I guess I just need to vent. I had 4 infusions of Enhertu and then a pet scan. The scan showed lung inflammation and tracheomalacia. My doc said no more chemo. She wants to send me back to Boston because she said they have more options. To be honest, I’ve been fighting this for 20 years and I think I’m done. Being off chemo I thought my energy would come back, but it hasn’t. I could sleep all day. They gave me Ritalin which helps for about 4 hours and then back to the couch. Also my bones and joints hurt like there’s no tomorrow. I have a very hard time walking. I’m wondering if this is it for me and that’s why my Onc suggested Boston. My cancer is only in my bones, but very painful. 30mg of morphine a day doesn’t even touch it. Sorry to sound so morbid but I really feel this is the end. If it is, I’m ok with that. Nobody should live like this. Thanks for listening. This forum is a God send!🙏🏻
Not well!!: I guess I just need to vent... - SHARE Metastatic ...
Not well!!
Hi there. I don't usually give advice etc in a forum like this but I read your message and felt I have to say something. I'm in New Zealand so things may be different for you in USA. I was a hospice nurse here for 8 years and the Team leader for 3 of those years and from what I have seen 30mgs of Morphine daily is not that much. Its dam hard to keep going when you're in pain and you become depleted very quickly, not from the disease but that you aren't on the right medications/dosage. So I feel you must talk to your doctor and get an increase, and maybe take it twice daily. If they are concerned about addiction, there's no need. Addiction doesn't happen when your body needs it. If Boston is close enough for you to get there without too much hassle I would recommend it as a second opinion.
I hope I haven't overstepped the boundaries, and that you can find the strength to push through. All the best Susan
I agree wholeheartedly!! I worked for Hospice for 4 years in the pharmacy and we dispensed much higher doses of morphine for comfort. Patients were able to live a very comfortable life without lethargy because of the medication.
Jody
((Hugs to all))
Good to know
hi Lori. I read your post and it broke my heart. I too have painful bone mets and other serious issues in my spine and neck. I am mostly housebound due to mobility. I am telling you this so you have a frame of reference...I too had pain like you. however, I am taking the equivalent of 90mg of Morphine per day and 200mg of oxycodone (equivalent of 40 percocets) per day. you are, without a doubt, UNDERMEDICATED. I agree with both of the hospice ladies above. I was given these doses by pain management....they specialize in pain and appropriate medication. I would go that route before making any final decisions. and even if you do decide to go off treatment, you should not live in this severe pain. who prescribes your pain meds currently? your oncologist? I too hope I am not overstepping but when I read your dose...it made me angry that they are letting you live in such pain. this is what pain meds are for!
carole💛
Amen
Susan
You have not overstepped your boundaries. I will talk to my doctor about a second round at Dana Farber. I didn’t have a good experience the first time. I will definitely ask for a different oncologist as I think that might have been my problem the first time. Thank you for your reply. Everyone has given me such hope. I wish the best for all of us!
Lori
Dana Farber is one of the best cancer centers in the US! I've been to quite a few BC and MBC conferences heard some of their oncs speak, and I can sure understand why you might want to see different onc! We really need oncs who we have confidence in, like and trust. I don't know if this would work for eveeryone, but I've had extensive bone mets for over 19 years and have has very little pain. I think part of that is because I've been taking Celebrex for arthritis since before the MBC diagnosis. When I've had to go off it briefly pain has set in. Another thing to ask your onc about is physical therapy and whether it could be helpful for you. Are you on a med for the bone mets, a med like Zometa or Xgeva? I sure understand wanting this to end! I've had days like that. But I want to live to vote in 2024, lol!
have you tried THC for pain?
THC can be really helpful but review any non prescribed meds or supplements with your oncologist first to make sure you won't have adverse reactions due to any medications you take .
I am sorry you feel so unwell it's exhausting when you are in so much pain, I agree with kiwi67 that you should ask for more pain relief and get a second opinion. Getting your pain under control will give you strength to deal with this cancer. Sending healing energy to you xxx 🤗🤗🤗
Hang in there and try to be strong Jhshl512. I too would go back to Boston and get another opinion or different med to help. Pain management is crucial too. Most of us are all in the same boat. I also suggest using thc. I use it as a suppository and cbd roll on for pain, plus essential oils. I am also on enhertu and hope it is working, as I am her2 low and have had progression over the last three scans (8 months or so). xeloda and vinoralbin did not work. Sending you positive energy and blessings.
Thank you. I never heard of cbd suppositories. I’ve tried the hummus and they just make me more tired.
THC suppositories, look up RSO oil. You can get cbd in numerous things but you need to make sure that you are paying for full spectrum. My mom even uses it and she is 80. She gets the 5000mg and I use it too. Same stuff at 5000. It is expensive but it works and is better than the drugs that will damage your kidneys and liver, etc. Greenplanetus is the place. I hope it helps. Sending hugs.
It is a tough journey. Thinking of you in whatever you decide. I also feel sometimes it is just too much💕
YES. Thank you. Thanks for understanding
Dear Jhshl512, Be good to yourself and give yourself some room. Go back to Boston and hear them out before you make a decision. 🙏
Thank you for your reply. I have a lot of thinking to do.
Just wishing for the best for you. You must be a strong person to fight for twenty years, I hope you have a good support system and are able to find a way to combat the pain you are in.
Oh my,Jhsh512....my heart aches for you.After just six years of this crap I too wonder if I am at the end .
I have been on so many treatments and they all failed .
Presently after Verzenio+ Tamoxifen stopped working my oncologist wants to try Afinitor+Fulvestrant.
My insurance has denied the Afinitor so I am just receiving Fulvestrant for the last five weeks.
My BC metastisized into my bones,liver and now my stomach lining.
I will be 77 in November and due to my compromised immune system my husband and go nowhere and cannot even be around our children who refuse to take vaccines 😞
This past week my NP asked me if I had ever considered stopping meds and just having some quality of life for the time I may have left.
My husband will not even consider that concept🙄
We live on SS now and simply cannot afford the price of Afinitor.
Moffitt special pharmacy is still trying to find us some grant thru the manufacturer,so I pray they can.
My bones ache continuously and my legs don't seem to want to carry me even in the house.My clumsiness is quite annoying.They seem to have worsened since the Fulvestrant injections.
As you say,I too have very little energy and long to sleep even after a good nites rest .
I seem to be held together by my antidepressant and alrazolam,plus opioids for my spinal pain.
Sorry for my rant ...I just wanted to tell you that I will hold you up in prayer to God.He truly is the only true hope I can fully trust in😘
Hi,My name is Hannah and I go to Dr. Soyano at Moffitt since Dr. Khong left. I have some Ibrance that we might somehow be able to find a legal way through Moffitt to give it to you. I am in Panama City. Blessings Hannah
Hi Hannah
I already tried ibrance. It didn’t work for me. Thank you anyway
Hi Hannah,I also saw Dr Khong at Moffitt,I now have started seeing Dr Kimberly Lee.
I appreciate your offer but I have already done IBrance .It stopped working for me.
I too have lots of meds I no longer need.No one seems to legally be able to take them even though my Verzenio both 100 mg and 50mg are still in the manufacturers sealed packaging .
So frustrating as all these meds are so ridiculously expensive.
The Afinitor is the first one I have had a problem getting.Hopefully Dorothy (whom is still helping me even though Dr Khong has transferred) can get Special Pharmacy to find some grant somewhere.
Thanks for communicating with me 🥰 Prayers for your well-being💜
Dorothy is a sweetheart. Tell her Hannah from Panama City says hello.Blessings Hannah
I will!!
I just wanted to say that 6 years seems a long time to fight this darn thing… I am on just 3 years… all you ladies putting in such a big effort to keep going when life is tough, always supporting others with your life stories and experiences…thank you!
This site has truly helped me.I learn about what all these other ladies have experienced with all the different drugs before I have had to take them. I have even learned what to do when I get my Fulvestrant injections...one of the nurses didn't even know😕.
I am so sorry! I think your doctor is sending you to Boston because she has no options and doesn't want to "give up". You probably need a second opinion, consider Boston if you are open to more treatment. Talking to a second opinion might help you figure out if it's time to opt for no treatment. How many hours a day are you sleeping? Sleeping too much, not eating, losing weight, uncontrolled pain are all signs it might be time to stop treatment. I hope this is just a bump in a long road. Wishing you peace of mind, comfort, and love. ❤️🌺❤️
Yes, go to Boston, at least see if they have other options!! New treatments are coming out all the time. City of Hope is in clinical trials for AOH1996, which appears to be killing solid tumors of all sorts. Don't give up when you might be able to get into the clinical trials!
I did a clinical trial last year and was not treated well. I ended up failing at the trial and was told to go back to Providence because there was nothing they could do for me. I ended up with tumors on my spine which I then had to have neurosurgeon open up my spine to relieve pressure on my back so I could walk. So you can see why I’m leery to go back there. If I go I will be requesting a different oncologist. Thank you for your reply
Lori
Have you considered Smilow? I have an AWESOME TEAM at Yale Smilow. I can suggest my oncologist. She is going on sabbatical September-December, but I trust my entire team so this isn’t a concern for me. It’s a bit of a drive for you, but they are very open to Zoom appointments for when you really don’t have to go to an office.
I’d be happy to give you her information. She only treats breast cancer. So, this is another reason I love her!! She is involved in the research for many clinical trials, as well.
I’m happy to help!! 🙏🏻💗🙏🏻
Jody
Jody
Thank you for your reply. I believe Boston is a little bit closer to me. Thanks anyway. Maybe someone else reading this will benefit. I hope so.
Let's name names to help each other. I have heard about two bad experiences at Dana Farber as second opinions from people here, and many good experiences more indirectly. There is a doc from Dana Farber who speaks at the Living Beyond Breast Cancer webinars, Nancy Lin, who seems compassionate and on the cutting edge. I think she now specializes in brain mets, though.
Does anyone here have good experiences at Dana Farber? Who was the doc that you had bad experiences with? -- I went to Sloan Kettering for a second opinion and, after doing research to identify the docs I would like to see, found out that one does not have a choice: they assign you to a doc and say that they work in teams so it doesn't matter which one you get. Perhaps not, in terms of treatments offered, but definitely it does in terms of style and compatibility. Perhaps DF does the same.
His name is dr Phillip Poorvu. If I have to go back to him, I won’t go. His team was also awful.
Thank you!
Hello,Wishing you the best. You have gotten some wise advice and I pray that something works for you. Blessings, Hannah
I go to Dana Farber and my oncologist is Ann Partridge. She has always been kind and upbeat. I think she works very hard.
Ann is excellent… knew her formu days as oncology drug rep
may you be at ease as you make the choices that are best for you.
Replying to Tammy’s question about docs at DFCI. We were “assigned” to a particular oncologist on our first visit, but did not really connect with that person. We switched to Dr. Nancy Lin, who speaks often at major events as Tammy pointed out, and we have been with her for over six years. She is just the best, and my wife and I have complete confidence in her. What you see in this past LBBC annual conference where she was a keynote is exactly how she is in person-compassionate, incredibly knowledgeable, humorous, and a great “explainer” of how things work. She doesn’t sugar coat things, but also has a positive outlook on next steps. While she is world renowned for her work in brain mets, that is not the only thing she is focused on by any means. The rest of her team (NP, pharm, assistants, etc) are awesome as well. Hope you might consider her for a second opinion and if so, that she is able to see you.
Good luck and take care,
Dave
Dont give up! It’s only in your bones. It is almost harmless there. Although cancer is never harmless. I was 5 years bone only with no issues at all. Then two years ago went to liver. That changed the game big time. I am ok but not stable. Until breast cancer goes to an organ, you have lots of time left. Us liver Mets people do too. But the drugs are stronger.
Thank you for being so positive. It’s just my bones ache terribly and I’m also so tired. I’m not even up to going anywhere. My husband took me to Cape Cod for the weekend which I used to live to do. I couldn’t wait to get home. No way to live!!! Sorry I’m such a Debbie downer.
I pray that you find a treatment that works and still leaves you with the energy to enjoy life. I had an old friend who had bone cancer for over 10 years and still was able to travel, enjoy her kids and grandkids and generally enjoy Life. I have it in my bones now, including my spine, ribs, upper femurs, and also in my lungs, liver and some brain mets that were (cyber surgery) treated successfully.
So I really do feel for what you're going through. And I think of my friend when things get gnarly, take a deep breath and say, "Onward and upward, dammit!" and forge full speed ahead.
I wish you relief from the pain--I'd bug my oncologist if I had it. Or my nice palliative care doc. They should be able to medicate you properly to relieve bone pain. My old friend was on fairly high doses of painkiller at the end, but it allowed her to enjoy her time here. She also had a pharmacist who specialized in oncology to advise her. You still have options, though you may have to invest some energy in bugging your team to get the pain relief you deserve to have. Best of luck.
You are from my home territory 😊 I am from Maine but parents raised us in Connecticut. This weekend I am flying back to Maine. Due to military life we are retired in Nebraska. We love Cape Cod!
We had a camper in Bourne for 6 years. We spent 6 months on the Cape but had to sell it due to mbc. Those are my happiest memories. We also love Maine. I love the mountains. Thanks for your reply
Lori🙏🏻
20 years? That’s a long time, I have been fighting this for 5 years and I’m already exhausted. I totally understand how you feel. My body hurts so bad and have to do chemo again. I was supposed to start Enhertu 2 weeks ago but I was having horrible headaches all summer , found out I had a brain tumor. Had to have surgery, thank God the headaches are gone. Now my oncologist changed my treatment to 2 chemo pills and I’m staying on herceptin. I pray this works.
Don’t give up, you’ve come a long way.
I probably should’ve been clearer. I was first diagnosed in 2004. I had a lumpectomy and radiation. In 2013 a tumor showed up in my spine. I then became 4th stage. The tumor was removed and I had rods and screws placed to hold my spine together. In March of this year, my legs went numb. 2 more tumors on my spine. Neurosurgeon opened up my spine again to relieve pressure on my vertebrae. More rods and screws placed in my upper back. Did chemo for 4 months. Had to stop due to lung inflammation. I really don’t know how much longer I can do this, but I do pray that your situation gets better. You seem to be a much better fighter than me.
Lori 🙏🏻
So they're stopping the chemo because of toxicity?There are other treatments I'm sure though I can fully understand how you feel this could be the end. Band bone pain is the worst.
How about getting a second opinion / going to Boston to hear what the options are? If youre better informed it may be easier to make a decision.
All the best xx
I know everyone is telling me to go to Boston to hear what they have to say. I see my Onc on Thursday to let her know my decision. Biggest decision I’ll ever make, as I’m sure that goes for all of us. Thank you for your reply. 🙏🏻
Whatever decision you make will be right for you. Only you know your precise circumstances. To those who say 'be strong'. Making a decision not to have any more treatment is to me the strongest thing someone can do.
I hope you get more info to help you with your decision and also better pain control without unnecessary delay.
Kindest wishes xx
thank you for your understanding and kind reply.
So sad you are suffering so😢
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