New here and need support plz

Hadit · 11-09-2016, 09:53 AM

I was dx Sept 2015 triple postive. Stage 2. I completed chemo early ( stopped after 5 rounds due to ulcer). 5 weeks after stopping chemo I developed gout. Went on strong meds for it as it was so painful. Did lumpectomy without complications. No node involvement. Started radiation and 1/2 way thru developed a rash all over my body. Dr hadn't seen it before. I was admitted into ICU for 3 days on morphine as they thought this could be fatal "Stephen Johnson Syndrome". Biopsy cleared me of this dx. Scared my Onc dr to death! Finished radiation early due to sever slothing and burns. Thought all was ok until Aug 2016 when I developed severe telangiectasia ( bloody spider viens under breast). Saw 4 dr's to treat this and finally settled on a Vascular Sugeon who is treating me with sclaratharpy(?). It hurts from all the shots and hope it clears it up. Now I have gout for life and my Onc dr wants me to keep my port in for 2 more years tho I finished Herceptin Oct 2016. Anyone else asked to keep their port in after Herpection? If so, why?

Donna H · 11-09-2016, 02:41 PM

Hi Hadit-
I had my port removed 2 weeks after last Herceptin but I am sure someone on the site will chime in soon. I am really sorry to hear about your complications - it's a lot to deal with. Stay strong! I will keep you in my thoughts.

Lisalou · 11-09-2016, 06:18 PM

my port was removed shortly after my last herceptin as well. though I thought about leaving it in for awhile, uncertainty I guess. It would just need to be flushed every 4-6 weeks. I do know people who had the port removed and then needed to have it put back in later, which was not a problem. If it does not bother yu, no problem to leave it. If you want it out and wind up needing it later, a new one can always be put back in
Sorry to hear of all the challenges. Hang in there.

Mtngrl · 11-09-2016, 09:04 PM

No advice, just sympathy. You've had it rough!

Welcome to the club no one wants to join. Lots of wise, loving, caring people here.

FWIW I was metastatic at diagnosis and I'm in my 6th year of continuous treatment--an infusion just about every 3 weeks. I never got around to getting a port. At first I didn't know if I'd live long enough to make it worthwhile. Then one thing or another got in the way. I have pretty decent veins, still, but I will probably get one eventually.

I'm sorry you've had all those strange and scary medical conditions. You must be very resilient to live through all that and then report it so matter-of-factly. You'll be a wonderful help to others who are going through hell.

Amy

MaineRottweilers · 11-10-2016, 07:08 AM

What a terrifying induction to what's an already terrifying condition to be labeled with. I hope things settle for you soon. My Oncologist asked me to keep my port another year, I hated it so we split the difference and it was removed during my prophy mastectomy six months after my final Herceptin. I ended up becoming metastatic and had my new port placed over a year later. If you don't hate it, leave it in for a while. You'll need monthly flushes but that's the extent of the care.

Hadit · 11-10-2016, 02:49 PM

Thanks Donna, I really appreciate you taking the time to respond as I'm wrestling with whether to take it out or not.

Hadit · 11-10-2016, 02:51 PM

LisaLou, thanks for responding. With the ppl that you knew who had to have their port put back in , was it within 2 years after taking it out? What dx were they? I"m triple positive.

Hadit · 11-10-2016, 02:55 PM

MtnGrl, I was so moved by your response. I'm sorry for your situation as well. No one has ever said that my story was told so "matter of fact". I guess I come across that way as NO ONE cares! They just accept what I've gone thru as "normal". I'm trying to find others who are triple positive , like me. Your response will forever be imbeded when I tell my story to others, or not.

Juls · 11-10-2016, 04:27 PM

Hi Hadit
I am triple positive. Was stage 3 at diagnosis in 2013 but a few months later found to be stage 4.
Currently on Herceptin, Xeloda and Zometa. No port.
Julie

Hadit · 11-10-2016, 06:20 PM

Hi Juls, Why no port? Will you be on meds for life considering you were dx 2013?

Juls · 11-11-2016, 03:33 AM

Hi Hadit
I am in Scotland - Port has never been mentioned. Treatment 3 weekly and not weekly so that might also be reason. Veins still ok but I think if they can't cope then a port is possible.
At the moment I only need IV 6 weekly when getting Zometa as Herceptin now given 3 weekly by injection into thigh.
Yes - I will be on treatment for life. The worry here is that not all suitable drugs are made available to you. I have already had Doxetaxol, Perjeta (a trial drug here) and currently on Xeloda.Herceptin and Zometa. Hoping Xeloda & Herceptin continue to work!

Take care

Julie

TiffanyS · 11-11-2016, 05:33 AM

I had my port put in after my first chemo back in March, and I’m glad I did. Even though I have good veins, I cannot have an IV hooked up to my left arm due to having lymph nodes removed. Given that I will now have to have treatment every three weeks for the rest of my life, I expect that I will have the port for the rest of my life. I never feel it though, so it doesn’t bother me. If it doesn’t bother you, my recommendation is to keep it in for a while, in case you need it again (which I hope is not the case).

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene.
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that ultrasound and bone scan look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks on, one off for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancerous, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-3 blood test – Tumour markers are normal at 19.
11/16 – CT Scan scheduled for November 22. I can’t wait to find out if the Perjeta is working!

Juls · 11-11-2016, 05:39 AM

Hi Tiffany
I am the same - no IV to left arm due to lymph node removal. So always right arm!
Julie

TiffanyS · 11-11-2016, 07:47 AM

I just got my flu shot, which I normally get on my left arm since I’m right handed, but not this year. I hope my right arm is not too sore for the next couple of days!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene.
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that ultrasound and bone scan look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks on, one off for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancerous, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-3 blood test – Tumour markers are normal at 19.
11/16 – CT Scan scheduled for November 22. I can’t wait to find out if the Perjeta is working!