new "kid" on your block

[Sukey]

Junior Member

Join Date: Jan 2006
Location: albany,ny area
Posts: 1


New "kid" On the Block
...Hope I am in the right place for this posting...On Nov 9, I was found to have recurrent BC via removal of supraclavicular lymph nodes after almost 7 years being cancer free. My concern arose after a year's therapy for lymphedema in my right arm didn't seem to be controlling swelling, a decrease in strength and grip in my hand and arm. Treatment/therapy worked for about 10 months; mammo in August OK. Late August thru mid-October things just didn't seem to be comfortable...thought my radiation oncologist might have seen abit more of this sort of thing than my PCP and lymphedema therapists.
He picked up on "the node" right away and the merry-go-round began again. MRI, PET and related CT scans showed neoplastic activity in the brachial plexus...no where else at this time. Being told I now have stage IV/incurable breast cancer is beyond scary...But between my 2 wonderful oncologists, they have decided to do radiation first in the hope of putting the genie back in its bottle (and I am mid-way in those treatments) and to give me back use of my hand and arm (VERY swollen and quite painful...underlying lymphedema not helpful) and secondly, to keep the genie there with Herceptin. NO chemo, no port at this point...save the "big guns" for later should it be necessary. Abit spooked by IVs now after chemo (CMF) in 1998 and wobbly veins with so many subsequent tests. ER/PR-...HER2 +++ then and again now. Has anyone out there been in this place w brachial plexus involvement? Will I get my hand/arm back? I know I will still have to deal w lymphedema but I can handle that ok...at this point, I cannot pick up piece of paper...ulnar nerve very compromised and index finger also NO help. this posting sounds so disjointed but I wanted to ask so many things in a tiny amount of time....thanks for YOUR TIME

[Lyn]

Hi there and welcome, you have just shed a lot of light on the pain and suffering I have been having for the last year with neck and shoulder arm pain and the loss of the use of the lift muscle in my right arm. No one has been able to tell me so far why I am in such agony and I have a MRI scheduled with our large hospital in March and my whole life at the moment revolves around the pain and pain relief and the fact that I cannot lift my arm. This arm is not the original side of my BC but I developed mets to my remaining breast last january so have been having radiation and chemo, tomorrow I find out if any of it has worked when I get the result of my biopsy, I hate having to take the controlled drugs but they only just relief the pain until they are next due. I too am worried that I will not get the use back as I originally fractured my other shouler which went undetected for 3 months until finally detected on a MRI then it was too late avascular necrosis had set in and now I am putting off a complete shoulder replacement by having hydrocortisone injections about every 6 months so my left arm is useless as well and now my good arm has become the bad arm. I will let you know if I can find out any more, I am already on Neurontin and have been for about the last 6 months but this has shown no relief. Thank you for joining you must have been sent to this site by one of our angels, and once again welcome.


Love & Hugs Lyn

[Lolly]

Hi Sukie, welcome to the site. My first recurrence also involved the supraclavicular nodes and in my neck and at base of neck. Before confirmation by biopsy I had a lot of pain and swelling in that shoulder and arm, which was then compounded by the biopsy. I didn't think my arm would ever be normal again, but after a few months of Herceptin/Navelbine the pain was virtually gone, and I was left with just mild lymphedema to the arm, which is easily controlled. So hang in there, with effective treatment of the mets this should reduce the pressure on the affected nerves and quality of life should improve.

I myself have a port, have had it since that first recurrence in 2001 as the Navelbine is quite hard on the veins. But, in between chemos I've been on Herceptin alone and find the port makes life so much easier. I would recommend you talk to some of the patients at your treatment center who have ports and see what they think. It's probably going to be necessary at some point that you receive chemo in combination with the Herceptin and if your port is already in place it will just make it easier on you when/if that time arrives, especially since you already have "wobbley" veins. They're only going to get wobblier

If you are scanned again after an interval of Herceptin and find it's working to keep the cancer contained or even shrinking it, that will be great! But if you continue to have progression ie: areas enlarging or new areas of concern, keep in mind that chemo for mets is generally easier to tolerate than chemo for primary disease in that the goal is containment and good quality of life.

Keep us posted on your progress and good luck!

<3 Lolly

[Lyn]

Hi Lolly, how did you find your supraclavicular nodes? I have that much numbness and tightness around my neck and shoulder I haven't even thought to look for enlarged nodes there. I am glad you mentioned Navelbine, I thought I would try that again if my biopsy result today isn't favourable.

Love & Hugs Lyn

[Lolly]

Hi Lyn; I felt it initially as a tightness and pulling sensation when I was driving home one day, plus that arm felt really tired. When I went to rub the "tiredness" out I felt the lump right above my collarbone! That area is now finally shrinking with Navelbine, which surprises me and my onc because the last 6 month go-round with Navelbine only shrunk it by half, then it stayed stable on Herceptin alone, but now it is almost gone, whoohoo!

<3 Lolly

[Lyn]

Hi Lolly, and sorry Sukie for cutting in on your post but stick with us kid and we will take you under our wing and Look after you, well it is Friday 13th here, and in true spirit I went to the doc and got bad news, no change since commencing the X/C combo in September, not long I suppose. I asked my doc about the supraclavacil and the other theory with B P and she said that the MRI didn't show any lumps and it said my brachial plexus was normal, so I am stumped about my arm, all I know is the pain is taking over and I will have to increase my slow release dose of OxyContine so I don't have to have as many Endones and wait until March for the orthopaedic to report. I have all the symptoms and no proof. My biopsy is prominent dermal lymphatic invasion by carcinoma morphollogically consistent with breast carcinoma. The FISH isn't back yet but the trial drug requires a solid tumour that can be monitored so it doesn't look like I will fit that category, the tiny lumps under my arm in the scan are to small to report on and are in the skin so hopefully that is nothing. I had a teary out of frustration but I will be OK tomorrow, another battle to face.

Love & Hugs to All

Welcome to our club, although I am sorry you have to join us.

I don't have any words of advice to tell you, but I wanted you to know that I also have cancerous supraclavicular nodes (left collarbone). However, I have never heard of the "brachial plexus". Thanks for drawing my attention to the term, so I'll ask my onc at the end of Jan. I'll let you know after my onc visit.

Meanwhile, hang in there kid; you are NOt alone in your fight. Good luck & keep us posted on your treatment.

[jojo]

Every time I compose a post and submit, they bump me out, and I have to log in every time! ??? Anyway, the previous post was from me.