Page 3 of 4

Re: Need Support - Told today I'm on Palliative Care

Posted: Mon Jun 10, 2019 6:53 am
by nynessie
Updates:
(1) The hospital is hiring a full-time oncologist in July. :) Finally don't have to see a different onc every three months.
(2) Saw the latest onc (#4 for me in a year) May 30. Long story short he looks up from papers he is reading, asks if we'd seen a surgeon. No, we say, a little confused. Ah, he says. Reads the papers again, making them with a red pen. He looks at us and says: I think you might be a candidate for surgery, and explains the HIPEC surgery to us. Finished with saying we should think about it, and that he, unfortunately is a locum, and is there really only to approve my treatment each time. He recommended we make an appointment with the onc we saw in October rather than wait until sometime in July when the new doctor arrives. We call for an appointment when we get home.
(3) Saw the onc in Burlington June 6. He showed us the scans from September, January, and the most recent one at the end of April. Things look good :) He agreed that I might be a candidate, referred us to someone at Mass General.
(4) Friday morning I spent quite some tie navigating Mass Gen's phone system to secure a medical record number so the onc in Burlington can send my records to the surgeon there. Now we wait.

I will admit that when the prospect of surgery was "pie-in-the-sky" I was not anxious at all. Now I am quite anxious about it. Hubby said there are only a few options -- surgeon calls and says after seeing records I am not a candidate or I am a candidate. If not, we are not any different than before. If yes, then we likely head to Boston for an appointment. He keeps me grounded.

Re: Need Support - Told today I'm on Palliative Care

Posted: Mon Jun 10, 2019 8:01 am
by stu
Hi ,
I have found that the oncologist generally has a rough idea if it’s operable . Holding out for good news for you .
Your husband is doing a great job too .
Take care,
Stu

Re: Need Support - Told today I'm on Palliative Care

Posted: Mon Jun 10, 2019 8:48 am
by tbt4snow
(3) Saw the onc in Burlington June 6. He showed us the scans from September, January, and the most recent one at the end of April. Things look good :) He agreed that I might be a candidate, referred us to someone at Mass General.
(4) Friday morning I spent quite some tie navigating Mass Gen's phone system to secure a medical record number so the onc in Burlington can send my records to the surgeon there. Now we wait.

I will admit that when the prospect of surgery was "pie-in-the-sky" I was not anxious at all. Now I am quite anxious about it. Hubby said there are only a few options -- surgeon calls and says after seeing records I am not a candidate or I am a candidate. If not, we are not any different than before. If yes, then we likely head to Boston for an appointment. He keeps me grounded.[/quote]

I would recommend you to see Dr James Cusack at MGH for hipec. He was my surgeon for crs/hipec in April. He is the best.
Hope more good news coming your way.
Tina.

Re: Need Support - Told today I'm on Palliative Care

Posted: Mon Jun 10, 2019 6:03 pm
by radnyc
Don't give up! I know, it's easy to just say that, but, there have been many people who have been told that surgery is out of the question, and have become candidates. Not all doctors/surgeons have the same skill and confidence, sometimes it's a matter of looking a little harder. Sounds to me that cytoreduction maybe an option for you, find the centers that are known for this and make and appointment, I'm pulling for you.

Re: Need Support - Told today I'm on Palliative Care

Posted: Wed Jun 12, 2019 10:07 am
by boxhill
Really glad to read that you are responding to chemo now. I think that there is no doubt that you need to get involved with a real cancer center. It's great that you are consulting with someone at Mass General. I would suggest that if you are going to travel to Boston you might try to get a referral for a consultation at Dana-Farber.

I'm not sure where you live, but assuming that the Burlington you refer to is the one in VT, you should also have options such as Dartmouth-Hitchcock. You really need to be a patient somewhere with better resources.

Re: Need Support - Told today I'm on Palliative Care

Posted: Sun Jun 30, 2019 7:48 pm
by nynessie
Guess what I'm doing in mid July? I am heading to Mass General in Boston to see Dr. Cusack! I sent my records and test results and his office called to give me an appointment. :)

Re: Need Support - Told today I'm on Palliative Care

Posted: Sun Jun 30, 2019 11:12 pm
by Maggie Nell
That's great!

Re: Need Support - Told today I'm on Palliative Care

Posted: Mon Jul 01, 2019 5:05 am
by tbt4snow
nynessie wrote:Guess what I'm doing in mid July? I am heading to Mass General in Boston to see Dr. Cusack! I sent my records and test results and his office called to give me an appointment. :)

Great news. You will be in best hands with dr. Cusack.
If the surgery is moving forward, you might want to ask to see onc dr Clark there to check out a new study that uses vaccines and Keytruda.
I wasn’t able to participate because I found out about it after my surgery and as of now there is no visible tumor to make vaccines from.
Best of luck.
Tina.

Re: Need Support - Told today I'm on Palliative Care

Posted: Mon Jul 01, 2019 8:30 am
by AmyG
nynessie wrote:Guess what I'm doing in mid July? I am heading to Mass General in Boston to see Dr. Cusack! I sent my records and test results and his office called to give me an appointment. :)



That is like two weeks away!!! I'm super excited for you, I hope it goes better than anyone could have imagined.

Re: Need Support - Told today I'm on Palliative Care

Posted: Mon Jul 01, 2019 9:44 am
by Punky44
Yay! Keep us posted.

Re: Need Support - Told today I'm on Palliative Care

Posted: Fri Jul 05, 2019 6:12 pm
by nynessie
tbt4snow wrote:
nynessie wrote:Guess what I'm doing in mid July? I am heading to Mass General in Boston to see Dr. Cusack! I sent my records and test results and his office called to give me an appointment. :)

Great news. You will be in best hands with dr. Cusack.
If the surgery is moving forward, you might want to ask to see onc dr Clark there to check out a new study that uses vaccines and Keytruda.
I wasn’t able to participate because I found out about it after my surgery and as of now there is no visible tumor to make vaccines from.
Best of luck.
Tina.


I'd like to help cure this beast ... so will ask about this.

Re: Need Support - Told today I'm on Palliative Care

Posted: Fri Jul 05, 2019 6:15 pm
by nynessie
Looking for simple directions to Yawkey Bldg (Dr. Cusack) at Mass General in Boston -- we will be starting from Manchester, NH. We know to go down 93, but then things look complicated on google. Hubby would like to try public transportation rather than drive in downtown Boston. I want to get there without problems.
Thanks friends!
Agnes

PS: And directions to return to Manchester, as I've been told there's lots of one-way streets ....

Re: Need Support - Told today I'm on Palliative Care

Posted: Fri Jul 19, 2019 6:26 pm
by nynessie
Monday: Appointment with Dr. James Cusack (surgeon) at MassGeneral. He said there was still too much disease for him to be confident in removing all of it. He called in Dr. Jeff Clark (oncologist) to consult. Left with treatment plan to continue with FOLFIRI, adding Cetuxamab. We agreed to ramp up my treatment to be a bit more aggressive. I would do four rounds (2 months), scan, and return to see both of them at the end of September. Dr. Clark would call Dr. Singh to confer.

Friday: Appointment with Dr. Singh (oncologist, newly hired at my local center). A great first impression. He had spoken with Dr. Clark; told him he needed to review my history. He discovered that I had two biopsies - one during a colonoscopy and one needle-core for the mass outside the colon. The first was KRAS mutated. The second showed KRAS wild. He faxed over the two different results to Dr. Clark on Thursday. At the appointment he explained people could indeed have both types, and I expressed concern over that, asking lots of questions. At end of appointment we had agreed I would skip next week's treatment and have a biopsy repeated on the mass outside the colon. If this new biopsy also came back wild, I would add Cetuxamab. If not, we'd discuss options. Biopsy is sent for next Friday, with appointment with Dr. Singh the Friday following. Next treatment would be Monday after that. I needed to decide if I wanted to add the new drug or wait until the results of the biopsy. Chances are the results will take longer than a week to return.

At 5pm today, my phone rings. It's Dr. Clark calling me. He had not reached anyone at my home cancer center, so he called me. (WOW!) He told me he had receive the information from Dr. Singh, so it meant I was not a candidate for the drug, telling me other options. I told him about my appointment this morning, and we both agreed the best approach would be to continue with the treatment (FOLFIRI only) until the results are back. He would prefer I did not take the drug if I am indeed not wild.

I am seriously impressed with today. I have a new oncologist here who is not only staying for the long term, but who is willing to communicate with outside doctors, and who treats me like an equal in my own care plan. I have an oncologist in another state who not only takes the time to respond to my local doctor, but who takes the time to contact me on a Friday evening.

Now if it wasn't so hot and humid right now. Everyone please enjoy your weekend. :)

PS: We stayed in Manchester, NH. Took bus down to South Station. Took Red Line to Charles/MGH. Yawkey Building is literally at the T-stop. Could not have been simpler. Thanks go to my in-laws for driving to/from Exit 5 for the bus. <3

Re: Need Support - Told today I'm on Palliative Care

Posted: Mon Jul 22, 2019 5:39 pm
by juliej
nynessie wrote:I am seriously impressed with today. I have a new oncologist here who is not only staying for the long term, but who is willing to communicate with outside doctors, and who treats me like an equal in my own care plan. I have an oncologist in another state who not only takes the time to respond to my local doctor, but who takes the time to contact me on a Friday evening.

What a difference the right doctor/cancer center makes! Getting someone who's willing to treat you like a member of a team is a huge improvement. I have a very good feeling about this! :D

Juliej

Re: Need Support - Told today I'm on Palliative Care

Posted: Thu Jul 25, 2019 7:53 am
by nynessie
AND THIS IS HAPPENING!

I found out July 22 I will not begin new treatment plan with Cetuximab. I had 2 biopsies - one with sample from the tumor inside my colon, one with a sample from the mass outside my colon. One is type wild and one is mutated. (Not sure which one is which.) Good news is my last CEA was 2.7, and the mass is down to 7.8cm but the small nodules around my abdomen have not disappeared.

So.... over a span of 8 days my life will look like this -- and yes, that is 2 bowel preps in less than a week :|
Appointment with GI is July 31.
Colonoscopy is August 2.
IVC Filer placement scheduled for morning of August 5.
Stoma Mapping is afternoon of August 5.
Pre-op appointment with surgeon afternoon of August 5.
Phone interview with anesthesiology morning of August 6.
Surgery begins morning of August 7.

Add to this:
Husband out of town all next week, returning home to drive to Boston where he'll stay until August 15.
Daughter needs to be picked up from summer job in NH on August 16.
Daughter needs to move in to her college room August 22. She's a freshman, so this is a big deal.

We live 350 miles from Boston.

What are my chances of being discharged before August 15? And going home?

The surgery is major -- CRS/HIPEC -- and includes a complete hysterectomy (ovarian mass), removal of sigmoid, possibly removal of a small piece of liver, placement of ostomy, and whatever else I haven't been told yet. I'm 60, and in good health other than this cancer. Only drug I take is Lovenox/Savaysa as there is one small clot on one lung (hasn't changed since October). I've managed to gain 15 lbs since last June, and can walk a mile in under 30 minutes without breaking a sweat. :)

Right now I am bummed I might miss this part of my daughter's life. I am fine with sitting in car, or whatever, and just watching but really want to be there. If I am not discharged so I can at last go home, I am going to have to go live with my mother-in-law until my husband can come back and get me at the end of July. :|