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New Jersey/NYC/CT/Eastern Pennsylvania ladies

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  • Popcornme
    Popcornme Member Posts: 27
    edited August 2018
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    dtad, I read the process for NJ and it sounds ridiculous! It actually seems a little easier for NY and they have a lot of dispensaries in the city. When I asked my MO, she seemed hesitant to recommend me. I might just settle with CBD oil for the pain

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited August 2018
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    greetings from a Philly girl!

    Regarding CBD oil - I am currently visiting friends in Portland, OR - where cannabis is legal. Real CBD oil is legal. I learned something new:

    In states where recreational cannabis is not legal yet, the CBD oil is that is being sold is not the real deal. It is oil made from industrial hemp (male plants) - which does not contain much of the bioactive properties. In order for CBD oil to have enough bioavailable medicinal components, it must be made from the female plants which can be genetically altered to produce higher amounts of CBD (or for those interested, THC).

    I believe that if you get a medical marijuana card (PA it is now legal, and I know also legal in NJ and I think NY?), then you can have access to the "real" CBD oil. Not the stuff made from hemp. The stuff made from hemp will say on bottle that it is derived from hemp. I think it is the law that they disclose this information on the labeling.

    I tried the CBD oil here in Oregon and sadly it did not help me with pain or insomnia but instead caused me a couple uncomfortable panic attacks. It was the only thing that I altered in my regular medication/supplement regimen. So I can't think of what possibly else could have caused it. Wasn't feeling any anxiety or stress. Panic attack sensation started while on a gorgeous hike. So, me and CBD are a no go. Hope it works better for other people!!!

  • Popcornme
    Popcornme Member Posts: 27
    edited August 2018
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    Lovefromphilly, thanks for the information! Yeah, it seems cbd oil that's legal everywhere is extracted from hemp. There might still have an effect though if from a reputable company using pure cbd isolate. I ordered sample packs of transdermal cbd from Myaderm. I'm going to see how it goes and report back.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited August 2018
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    Yes PopCornMe! Keep up posted! It is interesting how different medicines can work so differently with each individual. I am glad to discover that CBD is a no-go for me. Now I know! The curiousity has been placated LOL!

  • Popcornme
    Popcornme Member Posts: 27
    edited August 2018
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    Just wanted to keep you updated on the transdermal CBD I got from Myaderm. It didn't really work for me. I was in so much pain from Taxol that maybe it wasn't enough. My MO prescribed me some percuset and that helped.

  • swg
    swg Member Posts: 59
    edited August 2018
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    I'm a Philly girl, too. I love love love my breast surgeon, Dr. Jennifer Simmons from Einstein and would recommend her to anyone. I also had a great plastic surgeon for my reconstruction--Dr. Zavitsanos from Jefferson.

    My treatment info is in my bio, but basically I was diagnosed almost a year ago (coming up on my yearly post treatment mammogram soon and am very nervous). Turns out I had 2 tumors..got a unilateral mastectomy in November and an implant exchange surgery in April.

    Luckily I had no lymph node spread.

    After treatment, I've been working out (thanks to the Livestrong personal training program for cancer pts and survivors) and changed my diet. No drugs. Didn't need radiation or chemo.

    I feel ok in general, but dealing with a lot of fatigue.

    I'm happy to provide support to anyone newly diagnosed..I think it'd be cool to have a meet up of all of us who live near each other sometime!

  • s3k5
    s3k5 Member Posts: 411
    edited September 2018
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    Hi,

    I am from NJ and just applied for the medical marijuana card. I will update you all about the progress or lack of it! I have bone mets, so the pain medicines don't help much. I am allergic to all opiates. Hopefully, the medical marijuana will help!

    S3K5.

  • InnaB2018
    InnaB2018 Member Posts: 766
    edited September 2018
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    Hi, ladies! Happy to have found you! I live in Westfield, NJ and am being treated at MSK Basking Ridge and Middletown. Just finished chemo on Wednesday and still dealing with side effects. Radiation will start on October 8, I hope. Signed up for the RadComp study - hoping to get selected for proton therapy.

  • InnaB2018
    InnaB2018 Member Posts: 766
    edited September 2018
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    Just read the posts on the previous page. Regarding MSK NJ offices not being NCI Centers. I don’t think it’s correct. The same doctors who work in Manhattan work there a few days a week. The boards are in the City. I had my mastectomy in Manhattan with both breast and PS surgeons who are based in NY, but work out of NJ office 3 days a week. Both of them live in my town, as it happens :). Can’t wait to bump into one of them at the local ShopRite

  • InnaB2018
    InnaB2018 Member Posts: 766
    edited September 2018
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    A couple of my friends were very happy with Dr. DiGioya at Overlook. She is a breast surgeon and works in tandem with her husband, who is a plastic surgeon. BTW, MSK just opened another center at Montvale in North Jersey.

    Someone mentioned Dr. Ligresti at Basking Ridge. She is my MO and I find her not just very proactive, but also very aggressive in terms of treatment. She is a very nice person and has been very responsive to my questions and concerns. She was recommended to me by my breast surgeon, Dr. Kirstein, whom I absolutely adore. At our first appointment Dr. Ligresti learned that I have Herpes Simplex (the one that causes fever blisters and suchlike) and put me on anti-viral med before and during chemo, because she said that chemo was going to aggravate it. Later i’ve come across a few people on this web site who had this very problem and when they got the anti-virals, it was already too late. When this sucker wakes up, it takes up to 2 weeks for the sores to heal with the drugs without chemo. I am happy with the doctor and would recommend her to anyone.
  • s3k5
    s3k5 Member Posts: 411
    edited September 2018
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    Hi ladies,

    I am currently being treated at Overlook hospital in Summit and happy with my MO. My bone mets on my spine are causing me a lot of pain and since the lesions on cervical spine (C7) and lumber spine (L5) are getting larger, I am worried about vertebral collapse/fracture. I would like to get a consult with an orthopedic oncologist in Central Jersey area. Does anyone have any recommendations?

  • dtad
    dtad Member Posts: 771
    edited September 2018
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    S3K5...Hi there. So sorry you are going through this. My recommendation if you want to stay in NJ would be MSK in Basking Ridge. Overlook is a community hospital with no university affiliation, which IMO is very important. Good luck and keep us posted.

  • NikJ
    NikJ Member Posts: 4
    edited September 2018
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    I go to MSK in Middletown. I had my surgery and all my treatment there. Most of the doctors work out of all MSK locations.

  • ratherbesailing
    ratherbesailing Member Posts: 118
    edited September 2018
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    Inna -

    Hope you're beginning to feel better!

    Re Radcomp, will insurance cover proton therapy if you're assigned to that arm?

  • InnaB2018
    InnaB2018 Member Posts: 766
    edited September 2018
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    RatherBeSailing, well, insurance will cover protons for the same amount as photons, which is not enough. I have to pay $5k out of pocket if I get selected. They gave me a credit card with $400 ‘to help offset the costs’ 🤦♀️

  • ratherbesailing
    ratherbesailing Member Posts: 118
    edited September 2018
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    Wow, that's a lot of money! Whichever arm you end up in, I hope it all goes well for you.

  • InnaB2018
    InnaB2018 Member Posts: 766
    edited September 2018
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    Well, the waiting is over. I’ve been randomized into the regular photon arm. Apparently, in my case they can’t do it in the prone position, because they have to hit supraclavical and some other node under the breast. $5000 will be donated towards my next vacation.

  • ratherbesailing
    ratherbesailing Member Posts: 118
    edited September 2018
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    Which you will be more than ready for! Best of luck to you.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited September 2018
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    Hello again! (And hi Philly people!)

    Turns out that the hospital where I see my MO team is the first in the country to start a medical marijuana clinic. NOT a dispensary but they are now doing MM research and there is a palliative care doc that takes my insurance there. So my MOs made me an appointment to meet her which I did a couple weeks ago and already have my MM card.

    I'm going on Monday with parents in tow. We are all so curious! I've lived in Oregon where it is legal recreationally, but I am curious about how they will prescribe it.

    The palliative care oncology doctor prescribed a couple things that I should do like vape only 2:1 CBD to THC (I think 🤔). I made an appointment to meet with the dispensary pharmacist or doctor or whoever is there and we will decide what's best?? Weird system!

    Hope everyone is doing and feeling well somewhat. So happy for this gorgeous sunny day!!

  • s3k5
    s3k5 Member Posts: 411
    edited October 2018
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    Hi,

    dtad,thank you for your suggestion - I will call MSK today to see when I can get an appointment. I need a pain management specialist too.

    LovefromPhilly, did you get the MM ? What type did you get or try? Please let me know your experience with this. I just received the MM card but the ATC closest to me doesnot carry anything except the smoking version!

  • s3k5
    s3k5 Member Posts: 411
    edited October 2018
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    Hi,

    dtad,thank you for your suggestion - I will call MSK today to see when I can get an appointment. I need a pain management specialist too.

    LovefromPhilly, did you get the MM ? What type did you get or try? Please let me know your experience with this. I just received the MM card but the ATC closest to me doesnot carry anything except the smoking version!

  • Dandelion725
    Dandelion725 Member Posts: 11
    edited January 2021
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    can anyone recommend a breast surgeon for annual checkups in Burlington County, Camden County or Philly?? I typically see Dr Winnie Polen, but just moved and she's now an hour and a half away.

  • cookie54
    cookie54 Member Posts: 692
    edited January 2021
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    Hi Dandelion72, I live in South Jersey and I have been seeing Dr Dahlia Sataloff for the past 10 years at Penn Medicine in Philly. I have been very happy under her care she did both my bilateral mastectomy in 2016 and ALND in 2020. Excellent surgeon and educated doctor, truly happy with her! Good luck , be well.

  • jonib
    jonib Member Posts: 94
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    Any Jersey women still here? Would love to resurrect this thread!

  • cookie54
    cookie54 Member Posts: 692
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    @jonib Hey there I'm still here down in SJ area!

  • fighter00
    fighter00 Member Posts: 31
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    Just diagnosed stage 4. I’m living in NJ

  • jonib
    jonib Member Posts: 94
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    @fighter00 so sorry to hear this news. I’m just starting my third fight - not staged yet. Hoping they come up with a good treatment plan for you.

  • fighter00
    fighter00 Member Posts: 31
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    Thank you @jonib hope your biopsy is good

  • cookie54
    cookie54 Member Posts: 692
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    @fighter00 Ugh I'm sorry to hear about your progression, it just plain stinks! I'm here to tell you to give yourself lots of time to digest what is happening. I was devastated by Stage IV for many months and all I could think about was all I would miss. Over time after I started my new treatment plan and have been seeing some stable results with with my scans it really helps.

    It's a huge blow to us and is not easy. So I truly try to and have learned to take it one day at a time. Some days are more difficult than others. I hope your treatment plan attacks and stabilizes things for you.

    Sending good vibes and strength your way.

  • fighter00
    fighter00 Member Posts: 31
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    Hey ladies in NJ how are you doing??