NED has left the building, and my body, but hopefully not my brain:(

[jml]

Oh how I hate to share not good news, but unfortunately my scans were NOT good.

I had been gloriously NED in body and brain after a particulary difficult battle in both my body and brain for the first half of the year. Ever since, I've been doing well, if not for lazy bone-marrow that has kept me anemic and wbc's & plateletes miserabley low.
About 3-4 months ago I noticed my resting heart rate creeping up-80's, 90's, now 100+bpm's- and some other symptoms that indicate a chest node that didn't seem troublesome from the September PET scan and follow up Echo, but was a potential threat to my Superior Vena Cava -obstruction/compression, has in fact become problem.
In the past couple of weeks I've exhibited an increase in my syptoms, so we pushed my PET scan up a few weeks to yesterday.
Unfortunately it appears my treatment-Methotrexate + Cytoxan - which had been so gloriously effective for the past 11 months that I got see NED again after 5 years of continuous treatment (10yrs+on this journey) has stopped working.
I don't have details about the scan, other than my onc is concerned enough that she scheduled a stat repeat echo & MRI of my heart for today, but I wasn't able to adjust my schedule to go. So I'm scheduled for Monday morning.
I'm upset on so many different levels, but particularly alarmed because she said that if I don't feel well or become more syptomatic over the weekend to go the Emergency Room, asap.
Has anyone else heard/experienced SVC Syndrome?
In addition to changing to a new treatment - there are only 2 left for me - how did you address it? Just symptomatic control through radiation or a stent?
I'm anticipating that the next step is going to be towards Pertuzumab, but know that many others had a challenging time getting it approved by their insurance because of the stringent prescribing limits that the FDA approved the drug. This will most definitely NOT be a first line treatment for me...I've lost count - 13th line? 14th line?
Trying to manage my disappointment and search for information about what I should/shouldn't do so not to exacerbate the symptoms or increase stress on my heart. My BP remains low, as is normal for me.
The silver lining is that the rest of my body appears to be pretty clean, except for a few lung nodules that have waxed & waned over these many years.
I hope, I hope, I hope my brain is okay. I'm not scheduled for another Brain MRI till the beginning of next year, but I think I might push the date up.

Thanks so much in advance for whatever information you can offer.

Keeping the Faith~

Jessica
Dx-5/17/02 - 33 yo; Stage IV - L IDC w/single liver met
1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
2) ISIS 2504 + Herceptin - 6 mos, partial response
3) Taxol + Herceptin x 13 weeks to NED!
NED for 1 year
9/04 - Single liver lesion recurrence
Taxol + Herceptin - on/off to beat back lesion
12/05 - R Hepatectomy; Liver NED until 2009
3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy.
12/06 - L mastectomy + reconstruction through 8/07
10/07 - Recurrence - supraclav nodes
4) Gemzar + Herceptin - on/off controlling nodes thru
9/08 - 7wks Rads to supraclav nodes
10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents
Back on Gemzar + Herceptin, but no longer responding.
5) 05/09 - Tykerb + Xeloda - partial response x 5 mos
6) 10/09 - Xeloda + Herceptin - no response, disease progresses
7) 2/10- Ixempra + Herceptin - partial response x 12 wks.
Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study.
6/10 - Novalis to treat brain met - SUCCESSFUL!
8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
9) 8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
11) 7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
11) 8/11 –Start new combo Halaven+Herceptin
10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/11 - Scanxiety time -1st scans since starting this regimen
Good interval response, continue on H+H!
10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease?
Re-scan in 8 weeks.
1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion.
R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up.
12)Herceptin+ metronomic Cytoxan + Methotrexate.
…on a hope & a prayer. Only chemo I haven’t been on is Taxotere.
Hurry up Pertuzumab & TDM1!
Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more.
1/18/2012- 8 new spots in 8 weeks since last Brain MRI
one 2cm spot in brain stem, one 2cm spot in R temporal lobe.
No symptoms, THANK GOD!
1/25/12 – Start WBR x 15 rounds
2/10/12 – Oral Cytoxan WORKING! Melted supraclav node & undetectable by US!
2/14/12 – FINISH 15 rounds WBR;)
6/12/12- Continuing on oral Methotrexate BID & Cytoxan qpm, but on chemo break
for 3rd week due to low counts.
6/15/12 – Yay! Resume chemoJ
6/25/12 – Chemo break again due to low counts L
6/28/12 – PET Scan & Brain MRI this week…
NED IS BACK!!! NED in the HEAD, NED in the BODY!
10/26/12 – Still NED in the HEAD, but single troublesome node in chest, precariously close
to superior vena cava/heart. Not a perfect scan, but pretty darn good.
Maintain current treatment and
Echocardiogram on 11/1 to keep an eye on node.
11/1/12 –echo shows normal cardiac function J & node non-threating,
but experiencing symptoms of Superior Vena Cava Syndrome (obstruction/compression)
12/3 - hold cytoxan & methotrexate bc counts too low.
12/13-moved up PET scan due to increased SVC symptoms
12/14 –No more NEDL node progression causing increased SVC symptoms
12/17 – repeat echo & new chest mri for closer look…
Sad, scared, heartbroken

[Mandamoo]

I'm so sorry you've had this news - has your onc said it is definite progression? I have heard of stents being used. Could you go back to a drug that has worked well in the past in conjunction with Perjeta and Herceptin? What about compassionate access for Perjeta? Have you done a platinum chemo? I was being suggested this this week. Another suggestion for me was Avastin or Afatinib. JYou have a very involved history so just throwing some stuff out there. Remember Darlene Gant had a good response to Perjeta so there are options. Remember to breathe.
A xxxx

[Pamelamary]

I can't offer advice, but am sorry to hear your news and send all good wishes for your further treatment..... Pam

[fullofbeans]

Hi jml,

I have had SVC and had to be stent.
For me it started for weeks (5 or 6) where I would wake up with puffy eye and found that my cheek where bigger but could not be sure as if I had put on weight. It was when I was enrolling for Teresa and was busy getting things done as quickly as poss so did not investigate further. I did not know what to look for. My morning face started to become a joke and shortly after I woke up with grossly enlarged cheeks and half of my neck a trully abnormal face. Also a sign is the vein on your chest they become quite visible. I went to the hospital and they wanted to keep me in until I was stent.

Because it was not detected early for me they could not do anything except for stenting (the clotting was all hard). Unfortunately my face never trully got back to normal and this to this day, causes me a lot of anguish, avoiding pictures ect.. and thinking that is how people will remember you.. it's hard and i have had to remove mirrors from my home for my own sanity. But 8 months down the line it is better, not there at all but betterwith some days are better that others but no one can tell me why.

Please do not let it get to that, act early so it can be de-clotted and therefore you are not left with a fat face on a slim body. For me they could see the blockage on the CT scan, but you need to look for it. That or the uk radiologists are really crap.. they never saw mine forming until they were asked to look for it. Usually tumours are surrounded by clotted blood around these area. If stenting is needed do it early so your vein is kept well open (better if the clot not too hard and can be removed),therefore, avoiding swollen face, which is basically the overflow that can no longuer pass th' the vena cave and it diverted to the vein going to your face)

I hope it help, thinking of you and how amazingly strong you are

[Bunty]

Jessica, I admire your strength, and hope that this current situation is resolved quickly for you. I hope Perjeta is an option that can happen for you, if it is appropriate. Sending you loads of positive vibes.
Marie xx

[KDR]

Jessica
You've been through so much and you didn't need or deserve being dealt this card.
I have been amazed by your strength and courage since I've joined. I know you'll come out on top. Just like you say, keep the faith. Things will soon be going your way.
Love
Karen

[jml]

Thank you so much for your support and encouragement my friends.
And FoB, thank you for sharing your experience with me.
My scans from September revealed a small node close to the SVC, but my docs didn't think it was large enough to compromise the vein. I immediately started doing research and discovered this condition, Superior Vena Cava Obstruction Syndrome.
We did a follow up echo, and all things looked okay. Ironically, my increasing HR was only 72bpm's on that day. Weird.
But in the last few weeks, as my HR has continued to increase, I started to put it all together as I was exhibiting more of the SVC symptoms - the facial edema - it reminded me of when I was on decadron for WBR last February- engorged jugular veins, constant feeling of fullness in my head and ears, especially when I bend over or crouch down, mild headache.
The severity of the facial edema fluctuates, especially depending on how long I've been lying down/sleeping. I now try and sleep propped up so that my head is higher than my heart. It also resolves a bit over the course of the day, so most people don't notice once I'm out and about or they have been too polite to say so.
I attributed many of these symptoms to residual effects of the WBR. I'm sad to say I was wrong.

Knowledge is power, so I will spend this weekend researching procedures to treat SVC - I'm leaning towards a stent. Just hope I'm a candidate & it's not too difficult a procedure. I'd rather not have more radiation, and as we're waiting for my next treatment, whatever that may be, to kick in I really want to address these symptoms and prevent them from worsening.

FoB, I'm sorry you've had to deal with this. I've followed your journey for many years here on this site & know the challenges you've faced. And I hate it that you feel so uncomfortable with the changes of your physical appearance as a result of SVC. Just one more humbling compromise that we make to accomodate this monster of a disease.

Thank you again my friends for your encouragement, compassion & support. We've had too much heartbreak and sadness among us lately.
The tide needs to change NOW.

Keeping the Faith~

Jessica

[StephN]

Dear Jessica -
So sorry to hear that you have the fluid backing up malady! Depending on the cause, node pressing or clogging up from within, there are a few ways to get this under control.

You should get a CT venogram to have a good look at your veins if you don't have a large enough node in the vicinity.

I recall about 3 years back that Brenda had a node pressing on her esophagus and had it radiated. Her voice was impared and became hoarse. That was a successful treatment for Brenda for this area.

In my case I had a very narrowed vena cava due to blockage around my catheter to my port. I have had 3 angioplasties and had to have the port and line removed. I also had the "moon face" from fluid back up in neck and head. Plus veins popping out on my abdoman, which resolved with the treatment.

In my case a stent was never needed.

At the worst, I would start to feel a little dizzy when I had my head down below my heart stooping, sitting or bending. It does make one think of brain mets!

[Redwolf8812]

Praying for you Jessica, and your medical team. You've still got options. You are an inspiration with all you've been through.

- Penny

[Paula O]

Good morning,

I really, really wish this rough stuff wasn't happening to you, Jessica. You've sure been through a lot.

I think you are doing a smart thing doing the research. It'll help you make better educated decisions and come up with the questions you'll want to ask your docs.

Rooting for ya and praying for ya right now,

(((Hugs))),

Paula

I did a quick search on STVC stent cancer--

http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Symptomssideeffects/Othersymptomssideeffects/Superiorvenacavaobstruction.aspx

http://www.ajronline.org/content/193/2/549.full

http://www.ctsnet.org/sections/clinicalresources/thoracic/expert_tech-39.html

I bet you could find some pertinent discussions on some cancer boards by others who have gone through the same thing. I think that would be helpful to be able to talk to others who have had the stent or checked out different options.

Cheering you onward and wishing you the very best!

[Rolepaul]

Crummy bedside manner. I would tell the onc how upset you are and not to do treat you like that!!!!!

[Mtngrl]

Jessica,

I don't have advice, but I do want to let you know I'm hoping and praying for a successful resolution of this situation for you.

['lizbeth]

Jessica,

I am wishing the best for you, that the weekend be uneventful and the MRI on Monday shows a very treatable condition.

[Sandra in GA]

Jessica,
I hope and pray your medical team finds an option to help you. You have been so brave and stroug.
Hugs and Prayers,
Sandra

[fullofbeans]

JML remember that it was noticed too late for me, otherwise they could have used anticoagulation method to clear the thrombosed (made of cancer and bood clott). I this had been done on time my vein would be fine now. Therefore do NOT wait until it gets all hard and untreatable.
Considere half aspirine/day until you get better advice or analysis . I had angioplastie to open the stent but it work very marginally

[NEDenise]

Oh Jessica!
What a bummer! You've been through so much, been so strong...NED should really have had the class to stick around for much, much longer!
I'm hoping and praying good news and a great plan for you tomorrow.
Sending love and a gentle hug
Denise

[chrisy]

Hmmm. I don't know what happened to my reply...

Jessica, I'm sorry to hear that Ned has left the building. It was great to have him stop by but it's hard for us to remember he is such a flake.
you've had an incredible number of challenges this year. That thing about God not giving you more than you can carry? Must mean you are one strong lady even when you may not feel that way. And remember you are never alone.

Hoping to hear your new plan...remember you have a great team that has helped you get this far.

Please take care of yourself and try to enjoy the holidays. Don't forget to breathe.