New Jersey/NYC/CT/Eastern Pennsylvania ladies
Comments
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thank you sandcastle! I'll look into that group. I want to use the cold caps and feel like an 8 hour day plus 45 mins each way might be too much. Not to mention all the other treatments that go with the chemo given on other days.
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After my initial attempt at reconstruction failed, I am not looking at a bilateral LD flaps and Dr. Steven Copit at Jeff. Has anyone had the procedure with him?
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Daniella - I used the caps and did chemo locally for the convenience. Chemo is chemo and it doesn't matter where you get it as long as you're comfortable.
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warrior women - I kind of feel like that - chemo is chemo no matter where you go but then I question how the monitoring during administration or whatever else can go wrong during infusion. I do want to have an option closer to me in Monmouth. My breast surgeon (who was amazing!) suggested. Robert Wood Johnson but that's not that much closer- might as well travel another 20 mins to Basking ridge at that point
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DaniellaD,
Just to show there often isn't a rhyme or reason...
I drive from Orange County NY to Philadelphia PA for chemo because they have private rooms and I like the nurses. Sick huh? It's a 3 hour drive. The thing is, it would take me 2 hours to get into the city anyway and cost me 10x as much in parking and aggravation!
One of my girlfriends from Rockland is looking into Philly as well. She's been feeling like a number at Sloan and doesn't like it.
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Dear Daniella,
I live in Middlesex County, on the border of Monmouth. I had my surgery at MSK in Manhattan, but made an appointment in Basking Ridge with Dr. Gorsky. She was a little colder than I would have preferred. She gave me three chemo options and got a bit too aggressive with me when I became overwhelmed and wanted her to slow down and map out the plans. I plan to work through my treatment, and want to maintain as much of my normal life as possible. They recommended a Tuesday or Wednesday chemo day so that my rougher days fell on the weekend. After a two hour commute home, I was extremely overwhelmed. The next morning I was called with two appointments, Thursday, 7/31, 8:45 AM port placement in Clifton and 2:20 Chemo in Basking Ridge. Both on the same day! They also said that Tuesdays and Wednesdays are all booked and they can't add anyone to those days for chemo. Cat in Dr. Gorsky's office told me the port would be done in Westfield, not too far away, but this appt. was in Clifton! So I was expected to leave my home at 6:30 AM, have the port surgically placed in my chest and then make my way to Basking Ridge for 2:20 PM! That would have put me at a return trip home at 8:00! I'm not sure who thought this was a good idea, but for the first time in this two month ordeal, I had a bit of a freak out! I called my husband and sister and decided a year of commuting to Basking Ridge wasn't going to work for me! They both got to work and assisted me in other options. Long story short, I had my port placed locally at Centra State this past Tuesday, a muga scan there yesterday, and Dr. Silberberg in Freehold is scheduling my first chemo this week, possibly on Tuesday. My mother had breast cancer for 29 years. She was treated at MSK Manhattan, but had her chemo with Dr. Silberberg. MSK wasn't giving me any chemo options different, newer, better or exclusive to their facility, so I'm minimizing my stress and getting treated closer to home. Good luck with your journey. Seems like we may be on a close timetable and live nearby!
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Thank you DonnaNJ! I am actually not meeting with Dr. Gorsky now. They gave me a newbie and I'm not sure how I feel about a woman (no matter how brilliant) that just did her fellowship in 2013. I think I'm going to hear her plan and then meet with some local doctors, too. I'm going to check Dr. Silberberg and I heard of another recommendation for a doctor in Little Silver ( maybe Dr. Dennis Friedman). Since I am doing the cold caps, I don't think I want to add on that extra commute especially if it's the same treatment. We will likely be on the same plan. Did they give you the other option - tch? I keep hearing one is better than the other and then vice versa. Thank you all for your input and advice!
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Daniella - I found it easiest when cold capping to stay local for chemo. The caps are worn for 4 hours post chemo and changed every 20 minutes. We timed it that the car was packed and my capped changed and then we'd jump in the car, zoom home in just enough time to change the cap again. We didn't need to pull over on the side of the road as many others have done. It's doable but an extra burden.
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Daniella.....you must mean Dr. Denis Fitzgerald?? My Neighbor and another lady I know went to Little Silver to Dr. Susan Greenberg........I did read about Fitzgerald....sounds good...but I do not know anyone who went to him........Liz
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Yes Sandcastle! My mind is going. I think they are in the same group. I have seen or read so many dr names lately that I just don't know what I'm talking about.
Warrior woman - yes, I was thinking the same thing about the caps. I'm sure I would want to go home as soon as possible after treatment.
Maybe this is a dumb question, but is treatment given in the hospital or do most of these doctors have their own center? How does insurance work with that bc my insurance agent told me to make sure all my drugs were given at the hospital to avoid paying extra rx expense. Thanks!
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ok, so I did not do chemo but did the full rads, I switched hospitals to one near my office so I could better handle working through all. Course, it just so happened to be a better hospital and cancer center (I live in Sayreville, did surgery at St petes but worked in Hackensack which was less than a mile from my office. Let me tell you, I was a totally blown by the end and that was with my coordination of locations.
Do try to limit your travel ladies! best of luck and it will be over, I am 6 years clean!
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Daniella - I believe chemo is available in a few types of facilities - both hospitals and cancer centers. I went to a privately owned cancer center for chemo. They have a pharmacy and it's where I receive my Tamoxifen. I don't pay anything for it. I'm not certain if that is because my insurance covers all of it.
Proud - six years out...it' music to my ears. Thanks for hanging around here to give others (me) hope.
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Daniella,
Dr. Gorsky was leading me towards ACT, but Dr. Silberberg felt the potential heart damage and side effects weren't worth it. He recommended TCH which is what I plan to begin this week. The chemo is done in their facility, one block down from Centra State Hospital. I am very interested in hearing about the cold caps. I have Googled and researched them to death, the cold mitts and socks too. Which are you planning on using? I even looked into the Penguin cap rental, but can't tell if the $580/month is for only one cap. From all I've read, you need 3-5 caps, mitts, and socks and dry ice for storage. The total cost would be too much. Let me know what you are planning and if you have a cheaper alternative! The nurse is calling tomorrow to set up my first appointment. Ready to get started and get moving toward finishing!
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Donna - In total, I spent 3k for chemo and this included the cap rentals for several months, all the supplies and everything else I needed to survive chemo. I iced my mouth, feet and fingers with regular ice and ice packs. I did not get mouth sores and my finger and toe nails were fine. No neuropathy either. You need at least 8 caps and straps and the $580 is for all 8. My insurance reimbursed me some of my expenses. You need to order them at least a week before starting chemo. You need to allow time to practice learning how to use them. There are less expensive brands, funding and using a biometric cooler saves on the cost of coolers and dry ice. Dry ice ran about $150 for each infusion except the distributor gave me a huge discount. Check the cold cap threads as there is a ton of information and advice.
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Donna - contact geralyn from Penguin Cold Caps ASAP. She will get back to you. Too bad we are starting chemo at different times bc we probably could've shared the rental. I read some women did that in California who were having treatment near each other. Go to the thread on this site all about cold caps. According to my research, you would be doing the chemo with the most success with cold caps. There seems to only be one place in NJ with the coolers - Robert Wood Johnson in Hamilton. I contacted the Rapunzel Project when I first decided to use them to see about a freezer donation. They got me in contact with a group of women that would try to help me with capping during chemo if I had no helpers. Unfortunately, there are not a lot of cold capping info or help in NJ. We're on our own - except of course for all the wonderful tips and help from other users and PCC..
Warrior woman - did the dry ice facility offer any of the other tools necessary? (Thermometer, gloves, etc?)
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I purchased the coolers online and the thermometer from Sears (online). The gloves I got at a local hardware store. As I had one week to get everything in place, I didn't shop around and probably paid more than I needed to. I used Airgas for the ice as the retailers were to inconsistent with their availability.
Also, I simply asked four friends and they all said yes. Two were back-ups if my regular two had scheduling issues. They never did. They made chemo fun. We had food and they told stories and jokes. I have learned that I can depend on others in ways I never knew. We made a video of my last infusion. You can see the caps, coolers and a ton of food. Chemo Party
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just curious - how did the cold caps work out? Did you keep all or most of your hair? I've often had the feeling that my two rounds of chemo would have been a lot more bearable had I not lost my hair, which, as we know, is a very emotional experience.
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Hi Ladies,
I have been following this conversation thread, since I live in Central Jersey. I have been going to Overlook Hospital in Summit, for my MBC treatment. This is the closest place to me and I have been seeing the same MO since 6+ years.
Does any one know of an Orthopedic-oncologist in Central Jersey, who treats patients with bone mets? I have a lot of low back pain and I need to see an orthopedic specialist who treats cancer patients.
Thanks,
Desi.
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Joan -
Look at my profile. I have my before and after chemo photos up. It was one less trauma in a series of traumas. I hope you will never need them.
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Hi ladies
Anyone in the central jersey shore area - monmouth county doing cold caps? Looking for dry ice. Got a quote from one company at $5 lb! (I even tried to play the cancer card and he said $5!!) Any advice would be helpful. Thanks!
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Daniella - That's ridiculous. The going rate is $1 - $1.50. No one ever quoted me anything more. Giant Super Market carries dry ice.
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warrior woman - my husband found someone local. He wanted to charge $2 but my husband got him to $1.25. The guy knew right away what we needed the ice for bc he has had quite a few chemo patients buying dry ice. What gets me is that before cold capping, there wasn't a huge demand for dry ice - these places were giving it away if you needed it. Now it's like they are price gauging desperate sick people. Still waiting to meet with MO to go over plan....errrr.....
Btw, there another Jersey girl on the cold cap site getting treatment at Memorial in Morristown that needs a volunteer to help her. I suggested she contact you since you were treated there and may have some more helpful advice. Thanks dear! Hope all is well.
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Daniella - I did my chemo at Hunterdon and I really don't know the Morristown area at all. I had my surgeries at Penn and I'm either going to continue there or switch to Jeff. I honestly don't think that chemo patients are putting a dent in the dry ice market. Most of their customers are industrial.
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warrior woman - so sorry. I confused you with another post I saw earlier in the thread. Thanks!
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warrior woman, I love the video you and your friends made!! Made me smile
Cancer really shows us the power of good friendships, doesn't it? I have my last chemo infusion this Friday and cannot wait to be done. Have been cold capping and still have hair too. Congrats on being finished to you!0 -
I received a notice about a Living Beyond Breast Cancer presentation concerning hormonal therapy. It will be held in Conshohocken on Thursday night if anyone is interested in attending. It is free, but they ask that you register.
Thank you for registering for Living Beyond Breast
Cancer's upcoming community meeting, Hormonal Therapy: The Latest
Recommendations, on Thursday,
September 11, from 6:00 p.m. – 8:00 p.m. ET at the Philadelphia Marriott West, 111 Crawford
Avenue, West Conshohocken, PA
19428. Featured speaker, Paul B. Gilman, MD, will help
you learn about the medicines that are used to prevent breast cancer from
returning after treatment ends, explore the different hormonal therapy options
and give you tips on how to manage possible side
effects.Please note that the evening will begin at 6:00
p.m. with light refreshments served prior to the start of our presenter's talk
at 6:30 p.m. We look forward to seeing you for this LBBC program!
Please feel free to bring along a family member or friend who may be interested
in this meeting topic as well. Walk-in registrations are always welcome and it's
never too late to register! Warmly,
AmyAmy Grillo
Associate Director, Educational
Programs
Living Beyond Breast Cancer
354 West Lancaster Avenue, Suite
224
Haverford, PA 19041
Phone: 610.645.4567 ext. 105
Toll-free Breast
Cancer Helpline:
888.753.5222
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Hello.......Can anyone tell me if they have used Centastate Hospital in Freehold and their Lymphedema Program.....I would like to know your take on it.....I did try Wyatt but was not impressed....Liz
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I know that Firekracker tried it a while ago when she was having issues with her LE
I also believe that my cute trainer from RWJ has been working with the cancer center there for some time. I have just fallen in love with their pool...lovely salt water and the whole place is great and clean and such. When I went swimming there the other day, they had a table in the lobby about balance stuff with is my current problem. Actually, he did some surveys for his PHD using volunteers from these boards regarding LE.
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if you want an opinion, my buddy tim marshall is at Centra states a lot and I have only good things to say about him and his research into cancer survirors
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