LindaLou53

I have been on IV Zometa for 2.5 years now, off-label use for Stage 3C ILC with 23 positive nodes.  I initially got it every 3 months for the first 18 months and am now taking it every 6 months.  I never had severe symptoms post infusion but I have learned that if the infusion is extended to 30 min instead of 15 and given along with a small bag (250 - 500cc) of NS IV fluids it will greatly reduce any chance of side effects...at least that has been my experience.  I generally have absolutely no side effects at all.  I did have mild aches and pains and feeling a bit feverish after the first couple of infusions but that no longer happens now that we have slowed down the infusion rate and added extra fluids.

I am very hopeful that Zometa will soon become standard protocol for women with positive nodes as a means of prevention, not only of bone mets but the possibility of mets elsewhere in the body also.  Of course, time will tell and no treatment will be the magic bullet, but certainly the news up to this point is very encouraging for Zometa. 

This past July was my 8 year anniversary of IDC in the right breast. Tomorrow will be the 3 year anniversary of the biopsy that confirmed my ILC diagnosis of the left breast. I consider Dec 5, 2005 my real anniversary since that is the day we removed both breasts and 23 positive nodes.  I  am very grateful and happy to say I am NED at this point.  This January I get my next 6 month CT scan and IV Zometa dose.  Hopefully, the news will continue to be good!

Hi KatieJane,

Sorry you are having to go through all this.  Sounds like your medical team was doing a good job of trying to minimize any increased risk for your LE though.  I can only think of two reasons why you may be experiencing increased swelling at this time.

One is that you have had a major surgery and your body is still going through a period of general inflammation as it attempts to heal.  Any kind of increased stress or inflammation in the body can create increased lymph fluid production.  Even though the surgery was not on your LE arm, your entire lymphatic system is effected and has to work under an additional burden created by the surgery itself.

The other possibility, but I would think less likely, is that your surgery may have involved injury or removal of lymph nodes in the abdominal area.  If this is the case, in someone who already has LE and a compromised lymphatic system, any further damage could cause LE symptoms to worsen.  If your surgery was done completely vaginally, I would think the risk of this kind of damage would be much less than if you had an open abdominal surgery.

I would continue doing what you are now, keeping up with your daily MLD, wearing your garments and checking in with your LE therapist.  My suspicion is that as the healing process completes and your general inflammation from the surgery reduces, your LE will show signs of improvement also.  If, however, your LE worsens dramatically in your arm or trunk along with pain or redness, you should definitely get it checked out to rule out any other possible causes such as DVT or infection.

Living with LE really is a challenge and we have to be vigilant at all times.  It sounds to me like you are doing an excellent job of that.  Sometimes our LE is just very sensitive to changes in our environment and body, and with time a normal balance will be achieved again.

Let us know how it goes for you.

Hi Kira,

I got the same email and posted similar in the Jobst Donning Gloves thread yesterday.  I placed my reorder on LE sleeve/gloves thru BioHorizonMedical and compression socks thru ForYourLegs.com yesterday.  Thanks for giving this issue a topic heading of its own.

Here is a copy of the email I received:

Dear Valued ForYourLegs.com customer,
This letter serves as a reminder of the upcoming Jobst Price Increase. Jobst will be implementing a mandatory pricing policy on November 17th forcing us and all Jobst retailers to raise our prices to a minimum level they have set which is 40-50% higher than our current prices. (excludes their Relief line).

To help our customers out, we have extended our FALL BLOWOUT SALE and have lowered our prices on all Jobst, Sigvaris & Juzo products to the lowest they've been all year. This is your last chance to stock up before the price increase. Don't miss this opportunity. Shop now!
To date, only Medi-USA (Mediven) and Jobst have chosen to implement these unfortunate pricing policies. If you are interested in saving some money by trying another brand, please email us at support@foryourlegs.com with your measurements and the model you are currently wearing. We will evaluate each case individually and provide suggested products to help you save. Are you interested in saving even more????? Visit our new site featuring value-priced lines from Futuro, Therafirm and Activa (from the makers of Jobst)...

www.AlevaLegs.com

We are sorry for having to be the bearer of bad news and hope you appreciate our efforts to help you take advantage of these prices before they're gone. We also hope you consider trying other brands. Jobst is not the only brand out there and there are numerous comparable and affordable products available from other manufacturers. We have assisted thousands of customers in switching to other, more affordable lines and would be glad to assist you as well. Please consider trying brands like Sigvaris (www.foryourlegs.com), Therafirm (www.alevalegs.com), Futuro (www.alevalegs.com) and Activa-from the makers of Jobst (www.alevalegs.com). As always, thank you to all our valuable patrons for making ForYourLegs.com the largest compression therapy retailer! We appreciate your continued support.

Happy shopping!

Thanks for your post Jane!  I just ordered my pair of donning gloves from the ForYourLegs.com website this evening.  I also ordered some of their active wear Jobst support socks for my varicose veins.  Found out that Jobst is apparently going to have a significant price increase on their products starting Nov 17th so many of the online websites are having sales right now to move their stock.

It just so happens I met with my LE therapist today to be fitted for my Elvarex Sleeve and glove (its been 6 months and I am overdue for a new set).  I checked with BioHorizons, the DME I order my Elvarex from, and they are going to let me know if the Jobst price increase is indeed a fact. Once I hear back from them I will make a post.  If we have persons on the forum who regularly use Jobst support hose or compression products they might want to consider placing orders prior to Nov 17th.

Well the news is good!  Just read this post on BCANS from Elaine, detailing the events and success of their efforts today.  Here is her post:

What a day!

Today, Carol Waller's petition to the Nova Scotia Government to cover compression garments for those with secondary lymphedema was presented to the Nova Scotia Legislature and met with unprecedented success.

The day started with a press conference at 10 AM, which although not too well attended, started the ball rolling. Health Critic Dave Wilson, a former paramedic, was there, underlining how important they thought this issue was. We were introduced by NDP MLA Marilyn More, whose office is downstairs from the BCANS office. We were very fortunate to have been joined by Sandra Carr, a survivor who has lymphedema, wears a sleeve and a glove, and was an eloquent and effective spokesperson about how it is to live with it and how it has affected her life. NDP press secretary Kathryn Morse distributed copies of the press release and media package to those members of the press who didn't come, in time to create a buzz of interest in the issue.

By the time Chris d'Entremont, Minister of Health, arrived at the house, the press were primed, and he met with a media scrum. He know there was an issue coming up because I suspect there were a few unnamed people at the press conference who alerted him to it. He issued a statement that you will hear on the news tonight that he is instructing his staff to look into the feasibility of covering the cost of compression garments for those suffering from secondary lymphedema. He said that he understands the importance and effectiveness of compression garments as his mother is a breast cancer survivor and wears a sleeve!

In the afternoon we were escorted to the gallery of the legislature by Caroline Read, a researcher for the NDP caucus. Barb Thompson and I were very grateful for the support of fellow survivors, Peggy MacLean, Barbara Lawson and Allison Cunningham who joined us there.

Marilyn More tabled the petition which sat wrapped in pink ribbons and tulle on the clerk's table in front of the speaker the whole time we were there. She rose again a little later to introduce us to the legislature.

Although it was a bit of a wait, as we sat through motions and procedures, eventually it was question time. Dave Wilson asked one question pertaining to health coverage, then as his supplementary question, asked if the Minister of Health would be prepared to commit to a date for reporting on the findings of his department. Although (not unexpectedly) he wouldn't commit to a date, the minister did assure the speaker that his department will be looking into the matter and will report on their findings in a timely manner.

After we left the gallery we were met by a gaggle of reporters from every news outlet in the city and even some national stringers. Paul Withers was there from CBC. CTV was there, probably Global as well. John Gillis from the Herald asked some questions and there were several radio stations represented as well. Sandra Carr had her arm photographed from every angle and she spoke at length about how it affects her.

According to the NDP staff members, this is more than they ever dreamed of accomplishing in one day, and were extremely impressed by how effective we were, and how well prepared we were.

This would not have been possible if it were not for the efforts of Carol Waller and Rose Bechtel. Carol had the drive to put together the petition and collect the signatures. Working with Rose they developed the information on lymphedema, prepared the letter to the MLA's and wrote Carol's story which gave so freely of her experience. Rose contacted Marilyn More and enlisted her support. They are both to be congratulated and thanked for their dedication.

The help of NDP MLA, Marilyn More, Health Critic Dave Wilson, and the two staff from the NDP Caucus, Caroline Read and Kathryn Morse was so willingly and generously given that we scarcely have words to thank them. They were simply wonderful.

Sandra Carr was introduced to us by Yvonne MacGregor just last week, and we are so grateful to them both. It was just in the nick of time that she appeared and she was clearly the best person for the job.

On the way home tonight, I heard the story on two radio stations, and I fully expect that it will be covered by all the news shows and the Herald in the morning.
__________________
Elaine F

I am posting this for my good friends at the BCANS website who are trying to get current policy changed for Lymphedema coverage in Nova Scotia.  Our dear Jinky (Carol) spent many long hours creating the petition and gathering over 1000 signatures.  The petition will be formally presented tomorrow, Nov 6th to the Nova Scotia Legislature.  If you are a Nova Scotia resident, please read the following details provided by Elaine, the administrator of the BCANS website and organization:

Lymphedema Petition by Carol (Jinky)

A Petition asking the Nova Scotia Department of Health to fund the purchase of compression garments for breast cancer survivors is being presented to the Legislature on Thursday, November 6th. It is expected to be early on the order paper when the house sits at 1 PM. We hope to have a good number of people in the gallery at the time to show support. During question period right after that, Marilyn More, NDP MLA for Dartmouth South will rise and ask questions of Health Minister Chris d'Entremont about why this is not covered by MSI.

The petition requesting MSI to cover the cost of lymphedema garments was started by Carol (Jinky) of Truro, who gathered more than 1000 signatures from Nova Scotian breast cancer patients and their friends and families. Unfortunately Carol will not be able to be there because of ill health. However, on her behalf, Breast Cancer Action Nova Scotia, a voice for survivors, is presenting the petition to the government and requesting the Legislative Assembly to change the existing legislation so that the cost of pressure garments for lymphedema treatment is covered by MSI.

A press conference will be held at 10AM in the lobby of the legislature, and all are welcome there as well.

Breast Cancer Action Nova Scotia will be holding a press conference at the Nova Scotia Legislature Building on Thursday November 6, 2008 at 10am.

For far too long breast cancer patients have had to bear the burden both of a life altering condition called lymphedema and the financial cost of treating it. We feel our provincial government should be paying for treatment costs for lymphedema that is secondary to breast cancer treatment. On that day, a petition to cover the costs of compression garments will be presented to the Nova Scotia Legislature.

Please join us in the Gallery at the legislature to show our support of this really fundamental issue.

Be there for 12:30, no later:
Meet at the NDP Caucus office at 1660 Hollis St., 10th floor , one block away from the Legislature. Carolyn Read, NDP Researcher, will take us to the Legislature, get us to the right place and tell us what to expect.

See you there!
Elaine

Hi Ihopeg,

Was your MRI in June a Breast MRI?  With your history of ILC not detected by standard mammogram I would definitely be getting an ultrasound along with mammogram as a bare minimum.  Discuss this with your breast surgeon or oncologist so you can agree upon a standard followup protocol that is individualized to your personal BC history.

Hi Kessala, 

LE is a lifetime risk and while 75% of lymphedema onset occurs in the first 3 years following treatment, there are still patients who don't experience the onset of LE until many years later.  Here is a link to a recent (12/2007) and fairly comprehensive article on LE.  It may require that you register with MedScape to see the second page.  I can copy/paste the full length article here if you have a problem viewing the link.

http://www.medscape.com/viewarticle/566471_1 

Here are just a few excerpts:

"Breast cancer treatment-related lymphedema is caused by disruption of the axillary bed by excision of lymph nodes and/or radiation therapy (RT) to the area. Patients undergoing these procedures are at a lifetime risk of developing edema not only in the upper extremity, but also in the ipsilateral upper quadrant and remaining breast tissue.[1]"

"The onset of lymphedema may occur at the time of treatment or may be delayed several decades.[2]"

Here is another link to a 1992 article detailing the onset of LE in a woman 30 years post mastectomy. Her LE developed after she started doing daily finger sticks to check blood sugar following a recent diagnosis of diabetes.

http://www.medscape.com/medline/abstract/1739437 

Hope this helps.

Joyful, I had my bilateral mastectomy in Dec 2005 and did not do reconstruction.  I did think I would wear a prosthesis initially, but after not wearing anything during the 6 weeks of Rads I decided I liked going flat the best.  I also had developed lymphedema of my left arm and did not want to aggravate it by wearing heavy prosthesis and tight bra bands around my chest.  I have been going "flat" now for almost 3 years.  Last time I wore a prosthesis was for my brother's wedding a year ago, otherwise they just sit on my closet shelf.

For me going flat is certainly the most physically comfortable and convenient approach.  I do get a little discouraged at times about how I look in certain clothes, but that is mostly due to my prominent belly and rib cage which is now so noticeable without boobs.  Whenever I want to "dress up"  I wear lots of layers or interesting patterns or bodice designs that tend to camouflage my flat chest.  I am very tall, so wearing long tunics with a blouse or tank underneath works well for me also.  In spite of wishing I was younger, thinner and had gotten better hair, eyelashes and eyebrows back after chemo, I still feel going flat has been an easy decision for me!   

Initially I felt a little self-conscious in public but that did not last long.  I have found that most people just really are not all that observant.  I decided my personal comfort and sense of freedom was of more importance. 

Hi Tammie,

I don't believe it is all that unusual for a women to have mixed types of cancer present when you are talking DCIS and LCIS or even IDC and ILC.  I was told, however, that only about 5% of women with a breast cancer diagnosis will later have a second primary bc diagnosis. I am not sure if they consider two different types of bc found in the same breast at the same time as two primaries or not.  I have had both IDC and ILC, one in each breast but they were detected 5 years apart even though my docs now know the ILC was present when I was being treated for the IDC, it was just never picked up by the standard mammograms.

The fact that both your IDC and ILC tumors have the same ER/PR+ and Her2Neu-  status is good because you can benefit from both the chemo and the anti-hormonals.  Was your prophylactic breast clear of bc or were your tumors in different breasts?  It sounds like you are treating this aggressively and you have every reason to be excited about your reconstruction soon being complete.

I will only make one comment, not to discourage you but to hopefully keep you from becoming less vigilant regarding your future breast health.  Just as much as we can never blindly accept the statements of a  doctor who tells us we are statistically  "doomed" to a recurrence or incurable cancer, we also must not be too willing to accept as truth the statement that we are "cured". It would be great if we could know that for a fact, but unfortunately nothing in life is certain.

By all means, get on with your life, enjoy your wonderful family and know that you have taken the necessary steps to give yourself the best chance of a long and healthy future.  Just continue to keep  vigilant regarding staying in tune with your body and keeping up with new advancements in breast cancer research which might have a positive impact on you. 

You have made it through this last year and have every reason to celebrate!

Best wishes,

LindaLou