Ok, so I have had three different chemotherapy types.
Always ends in a hospital stay due to side effects.
This time I was in for two weeks. What upsets me is I live in Bayonne and oncologist is in Rutgers in Newark. It's about 15 min away. When I need ambulance my hospital is in my town Bayonne. When they try to call my oncologist they can never get through to her do to answering service. So I am without a doctor. You need a primary doctor to admit you and my primary is in Bayonne cannot go to Newark. I miss chemo and visits and she does not know why I was in hospital or what treatment I have received. She will just try a new drug on my word of side effects. She does not want to try lower dose even though last chemo lowered my marks almost 4400 . I was telling my primary doctor I need an oncologist in my town that goes to Bayonne hospital. Could not find one when first diagnosed. She said she knew of one. Sent her into see me in hospital.
She agreed the abraxane I just was on is a good treatment but but maybe a lower dose would be better for me. I met with her three times and decided to change doctors.
She said there is no cure for me but she would try to fine a dose and plan that would keep side effects at bay. She said she thinks it is better to give me a good quality life than I have now being sick c most of the time. She is having a port put in this week as my veins have collapsed. Chemotherapy will be done in her office in town, she will have a car pick me up whenever needed.
So please pray that I did the right thing by changing doctors for my convenience, and she helps me get through chemotherapy without so many side effects. As I don't know how much longer I can take the treatments. And we know what will happen if I stop.
I felt bad changing doctors and called to explain it was a convenience matter. I did like my doctor. They all just try to find a treatment that works.
She ordered a petscan in a new center so it was hard to compare. But it only mentioned t4 and liver as showing activity. Last one in different place had activity in arms ribs back hips pelvic. So did abraxane work or did new place not give as much information.
Sorry this is so long but I am just hoping for some good news somewhere.
I start chemotherapy on July 20 do not know what meds yet.
Barbara
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Jerseygirl45
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Barbara, what a lot you've been through! It's so frustrating when the politics of our crazy healthcare system gets in the way of good treatment. From what you've shared here it sounds like you made a good decision to change to a local oncologist, especially one who will do chemotherapy in her office and send a car for you. I think having an oncologist who can be reached easily in an emergency is important too.
You mentioned that your new onc thought Abraxane was a good treatment for you. Is it possible that you will continue it on July 20, just at a lower dose? My dose is low and I get it every other week; my onc said if my blood counts get low and don't recover on this schedule, she's fine doing it once every 3 weeks, as long as it's working. It seems like there is some flexibility with dose and scheduling on Abraxane.
Perhaps your new oncologist can connect you with a palliative care team to help with side effects? I'm glad she seems to understand that quality of life is important too.
And for now, let's believe the new scan and assume Abraxane did shut down the cancer activity in the other areas. That sounds like some good news to hang your hat on.
I hope you are home and can just rest up and recuperate from your hospital stay. Also praying that darn Fay doesn't dump too much rain on your area!
You seem to understand what I am going through, that is why I love this group. I could say the same thing to my family and friends but they won't get it.
She did at first mention using abraxane and changing dose and treatment spans. When I left her office she was looking at all of my records to make a plan. She said she has patients in there 80s that are having chemo and enjoying life at the same time. She goes by pet scans and not tuner markers. I will be 75 next week and would be happy to make 80 😊. I have four grown children that come a lot to get together and see me. They like to take my husband and I on day outings or the grown grandkids like to stay with me. They were not aloud in hospital and I was too sick to call them much. So I just want to be able to enjoy my kids and grandkids a little longer .
I’m so glad you can see your kids and grandkids, that sounds wonderful! We can see a few when the weather is good and we can sit apart on the deck or in the yard, and we stay in touch with others through Zoom or playing games on Board Game Arena. (I’m getting pretty good at ConnectFour but the 8 year old beat me again today!) But I miss the hugs and visits from out of town. The only place I go is for my infusion every other week, but it’s just enough outside exposure that I never feel completely quarantined. And Oregon cases are going up again. Glad NJ seems under better control. 💕
I have not been out of the house. Will be happy when this is over. We take small things for granted.
Barbara
Barbara,
First, let me mention that I'm so glad to see you post...I think of you regularly, and not just because I'm a former (but "always") Jersey Girl myself...
But I'm so sorry to read about the challenges you're facing...
For what it's worth, I think you're doing the best thing by changing. Yes, the relationship and a degree of loyalty matters but, unlike with a friendship, what matters more is that you get the treatment/service you need and want. It sounds like you've found a solution to this, so I'm happy for you and am hopeful that you settle down into a less stressful situation, especially so that you can enjoy your family, as you note in a response below!
Thank you Lynn I am hoping for a change. I am never on a treatment long only to find out it is not working. I don't expect to be cured, I just want to feel normal between treatments.
If she can just keep it from spreading for awhile thank 9you for thinking of me. It will be better having doctor in Bayonne. I am there some times three times a week. Will be nice to have My doctor if I need her.
Hi Barbara (while I'm happy to know/use your real name, you'll always be "JerseyGirl" in some ways! )
I'm doing well, thank you so much for asking..I'm on Faslo + Ibrance after Letrozole + Ibrance sort of failed. And on the verge of third-line treatment with "progression" noted on my last scan, but I'm dragging my feet (or is it "heels"?) on changing. Approaching six years in, so certainly can't complain!
I'm a big fan of NJ and am confident that you are accessing the best possible care there...And I admire the way you're approaching your treatment decisions...
Don’t second guess the swap. You need care where you are and someone who will work with you. It does not sound like there was any coordination of care in your previous situation. It does sound like it was a nightmare.
Look forward with hope and optimism and just do the next thing. Keeping You in my thoughts. kc
And I permanently at a the teaching hospital now under an excellent oncologist. You have to trust and have a good oncologist. I swapped twice!!
Once in a treatment plan they will have an ICU unit. If you need to go in. They have a beeper number. A registrar will call you. And if you need to go in. One of the team will send out an ambulance.
They send transport for me now for my weekly chemo after the palbacibib stopped working.
You have to take control of your treatment. They have a lot of patients. My view is They can afford to loose one or two. There’s only one of me. I need to keep going.
After being told by z3 surgeons I needed a double mastectomy. I went on to find a younger different thinking cancer expert surgeon in withenshaw. 70 miles from where I live who agreed to a new America operation to preserve my breasts. The lump of the left actually completely went with the palbacibib.
Good luck with the treatment. And if you are not happy with your team. Ask to see someone else.
Lots of love
Candy
Hi Barbara,
I think you did the right thing changing oncologists. You should not feel guilty. It is easier for you to have an oncologist who is more accessible and makes treatments less stressful for you. I don't see any reason why your old oncologist should feel offended by your decision. I hope you will be able to handle the side effects and now that you will be seen closer to home this should take away some of the stress you have been feeling.
It sounds like the abraxane worked if your latest PET CT scan didn't mention the activity in your arms, ribs, back, hips and pelvis. That would be wonderful news! I would ask to be sure.
I so hope the pet scan was improved. But when you have a new center and reader it is hard to tell. Oncologist said we will do another scan in three months. So they can compare.
I just hope it all works out, so title of being sick.
Hi Barbara! Hope the new Onc works...don’t feel bad about changing due to convenience...u know which hospitals are best and easiest to get to for u...It’s a shame that we can’t just go anywhere...I’ve been stuck in that issue where I’m at as well...
Best wishes on finding a new med that works for u...🙏🏻💕
You have been missed. Glad you are back with a new plan that sounds good. Best wishes for a long and successful run with it. Your family sounds wonderful. Blessings, Hannah
Barbara, I’m so sorry to hear you have had a rough go of it! Having a team that is there for you is essential. Ironically, aside from the reasons these healthcare systems have to complicate things, it is the patient that gets left out.
We have to listen to our gut sometimes to know what is the best care for ourselves. It sounds like you are making decisions that will work better for you and will give you the care you need when you need it. It is always what is best for the patient.
I would celebrate the results of your latest pet scan; the meds are working and now maybe they can adjust the dose a bit. What a roller coaster ride this journey is. It sounds like your new team is awesome!
I’m so glad you have a lovingly supporting family. Grandkids are a wonderful source of positive energy!
I’m still on Ibrance and Letrozole and travel 70 miles for my scans and bloodwork. I have a GP locally that is not there for me. She changed my thyroid meds then let my RX run out and couldn’t reach her to refill. Finally got an appointment via “zoom” in two weeks. I have been at the mercy of pharmacy to provide partial refills.
Well Jersey Girl you hang tight thing are about to get better. So glad you posted...good to hear from you. Sending you virtual hug. ❤️
When my GP told me she knew a Oncologist in Bayonne I was so happy. The new doctor face timed me the same day to see how I was. She told me later in all her years as a doctor she had never seen anyone as sick as I I was. She came to hospital everyday. I finally signed the paper for her to get my records. I went to her office as soon as I came home. We are now a working on a treatment plan.
Congratulations on changing your oncologist. Landing in the hospital due to your medication shows your prior oncologist wasn’t taking care of you and being proactive. Your new one sounds like a gem, seeing you in the hospital and calling you. I’m expecting that your life will have a much better quality!
I am so happy you found what sounds like a great D.r/ Oncologist that is more convenient for you to get to :). I pray GOD will provide the right plan of action to beat back this disease, as we pray for a cure. I have a high immune response to anything foreign that comes in contact with my body. I have food, airborne, and beverage allergies. I don't know if you remember a movie called" The boy in the bubble"? I always felt like I am the lady in the bubble. LOL. I had grand mall seizures 14 years ago during (2)different post operation surgeries. This was a reaction to 2 completely different anesthesia's. My 3rd, and last surgery I had 4 years ago was without anesthesia due to my severe allergy reactions. I had to have the hospitals Chief Anesthesiologist, and the Chief Orthopedic Surgeon in the room talking with me during my surgery to make sure I didn't have a reaction from the local injection to deaden the area . Talk about having a captive audience LOL I am sure my health insurance coverage had to pay a huge bill for my last surgery. I have an Epi-pen, asthma inhaler, and a nasal inhaler. I thank GOD I have not had to use any of them in almost 3 years. I do take natural supplements that truly do work for me, yet I even have some allergies to some natural supplements LOL.I do pray that GOD will provide you with the perfect treatment for you. Amen I send you hugs from afar
Believe it or not I live a happy life, considering the challenges we are facing during this Corona virus pandemic. I am a happy camper as long as I know, and heed my bodies limitations. I am 13 years NED, without taking pharmaceutical medications/drugs. I take whole food vitamins, supplements, and herbs from GOD's green earth. I pray you will be able to tolerate the chemo. I am hearing a lot of people saying taking antihistamines like Claritin, or Zyrtec, and C.B.D oils/herbs are very beneficial. Also look into taking natural anti -inflammatory's. GOD bless you
Yessssss I am NED, I was told by the Oncologist I saw 14 years ago that I would not live to see 2009, and that I better get my finances, and arrangements in order. The aggressive chemo treatment I went through I was told that it was only going to buy me several months to tell my family, and friends. Back then I prepared for my physical death, but only GOD knows when I will hopefully/prayerfully make it to the pearly gates of heaven., and be face to face with my my Lord, and Savior. I take 30 whole food customized supplements daily, half in the morning, and half at night. I do take 2 natural anti-inflammatory capsules, and 1 natural anti-histamine capsule. I also take some natural anti cancer extracts/capsules. Even if the cancer were to return I wouldn't be fearful, or worry. I am so thankful/grateful for the 13 years of celebratory milestones with my family, and friends during which I have had NED. I am also grateful that this disease did not touch my mom, or my sisters.I always say here or heaven. Fear is not an option for me, but faith in GOD is the number 1 priority in my life.
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I am a happy camper as long as I know, and heed my bodies limitations. I am 13 years NED, without taking pharmaceutical medications/drugs. I take whole food vitamins, supplements, and herbs from GOD's green earth. I pray you will be able to tolerate the chemo. I am hearing a lot of people saying taking antihistamines like Claritin, or Zyrtec, and C.B.D oils/herbs are very beneficial. Also look into taking natural anti -inflammatory's. GOD bless you 
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