Cancer Support Thread

[Anonymous]

Many of us here are dealing with cancer concerns, and I thought it would be helpful to have a place to post where we could support one another.

My diagnosis: I was diagnosed in June 2015 with stage IIIC invasive ductal carcinoma (breast cancer), metastatic to 22 out of 25 lymph nodes. My grade 3 tumor was 5.5 cm. and I'm triple positive (estrogen, progesterone, and HER2 positive).

My treatment plan: I had a bilateral mastectomy with full axilllary node dissection (left side) in July & a port placed in August. From early August to early December, I received dose-dense Adriamycin & Cytoxan (AC) chemo followed by Taxotere, Herceptin, and Perjeta chemo. I continue to have targeted chemo infusion of Herceptin every 3 weeks & will continue that regimen until October. I started radiation treatment to my chest wall and lymph nodes on January 27, and I've had 13/33 doses. Following radiation, I'll begin taking Femara, a hormonal therapy, for a projected period of ten years. I'll be given injections of zoledronic acid during the years I'm on Femara to treat bone loss.

I had no history of breast cancer in my family, and I'm BRCA negative. (It turns out that only 5-10% of BCs are hereditary.) So here I am...mother of four (youngest graduates from high school in May), business owner, wife, daughter, mother, cancer patient.

I'm going to call myself Trudy, which is a diminutive of Ermintrude. The name is of Germanic origin, as am I (my German mom moved to the U.S. when she was 20). Ermintrude means universal strength, from the Old German “ermin/ermen” meaning whole, immense and universal, and “trud/traut” meaning strength and power. What better way to move forward than with universal strength? It’s what I wish for myself and for the rest of you on here dealing with cancer.

[Anonymous]

Oh yeah...I forgot to mention I'm young. Well, I feel young! I was diagnosed at age 45.

I hope to hear from some of my friends here...the awesome AMA poster who has stage IV breast cancer, the recently-diagnosed Angela, the other stage III poster I remember from a few months back, and anyone else dealing with cancer.

Both of my parents have survived cancer and are in remission at ages 76 and 86; my mom had epithelial-myoepithelial carcinoma of the salivary glands, and my dad had mixed cellularity Hodgkin lymphoma.

~Trudy

[Anonymous]

Suzy here. Hi.Angela. You asked how my body tolerated chemotherapy and as I get near the end of chemo I am surprised at how well it has gone. I am 60 and was in reasonably good, but not great shape at diagnosis. Chemo has not been nearly as difficult as I feared. Early on, I spent a fair amount of time reading comments on breastcancer.org and let myself get really frightened by some of the stories - I really regret that now. Much of what was posted there just didn't apply to me and the fear factor kinda sucked. I had 12 weekly rounds of Taxol and will have had 4 rounds of Adriamycin/Cytoxan at the finish. While I had lots of side effects, everything was manageable. Lots of times it was just a matter of listening to my body and tinkering with meds for the side effects. I haven't needed pain meds for anything.

I have wonderful doctors and communicating with them has been easy which has really helped. In retrospect I wish I had pushed myself to exercise more during chemo so I'd be stronger going into surgery and radiation, but maybe that would have just made me more tired. I'm still hoping for a lumpectomy and should know in a couple of weeks if that is feasible.

For the record, tacos are a bad idea no matter how strong the craving. Really bad. I'm not up early, I'm still up. Oh, well...

[Anonymous]

Trudy, I am not sure if this is a good place for such a support thread. People here can be Cra-cra.

I am a stage IV kidney cancer, 6 cm primary with 1.5 cm met to my lung; it was treated with surgery. I have been no evidence of disease for 3 years. No chemo was used, because my cancer does not respond much to chemo. However, the new drug, Opdivo, has had success with kidney cancer. But as long as I am NED I am good.

I was diagnosed with cancer at 48.

[Anonymous]

Hi Trudy,
Thanks for your post. I am sorry that you got this horrible disease. I was diagnosed with breast cancer. Lump and in the lymph nodes. Had surgery, chemo, radiation. Unlike the pp I had a very bad experience with chemo and have life alterating permanent side effects. I am also young with kids at home. I had no history of breast cancer. I did not drink alcohol, eat meat, and am thin. It just came out of no where and it has wrecked havoc on my life. I try to be "positive", but with cancer and treatment things keep going wrong and you get knocked down again. I am also tired of how the media portrays breast cancer as if we all just where pink and get boob jobs and we are done with it. I also feel upset that everyone expects you to smile and be strong through the whole thing and if I die people will write how courageous I was. Sorry but cancer sucks, the chemo is barbaric, and facing death when you have young kids is hell. You caught me on a tough week. I hope you are having a good day!! Thank you for sharing.

[Anonymous]

8:30 here. I will ID myself as DS63.

I saw in my face book thread, it was three years ago today I stopped feeling sorry for myself with one post:

Living with cancer sucks, but it beats dying of cancer

[Anonymous]

Suzy, I hope everything goes well with your upcoming surgery. I'm glad chemo wasn't too difficult for you. I've tried to walk every day, including during chemo treatment, but I know it's tough to keep up with maintaining a strong body as well as a determined mind. I've slacked off quite a bit these past couple of weeks (dealing with a terrible cold), but I'm telling myself I need to rest because of the radiation.

DS63, I know what you mean about the occasional cray-cray, but I've been a long-time DCUM reader & I've seen amazing kindness and support. I'm hopeful this thread will be helpful to someone (clearly I'm a glass half-full person). Congrats on being NED! I appreciate that FB post & try to remind myself of my relative fortune every day.

09:15, what sort of side effects do you have, if you don't mind sharing? My greatest concerns are lymphedema and heart damage from the Herceptin. I have a bit of neuropathy but nothing terrible. I iced my fingers and toes during my Taxotere treatments; perhaps that helped, though the jury is still out on the effectiveness of regional cooling to prevent neuropathy. I completely agree with you on the frustrating aspect of rah-rah cancer culture. A friend of mine said to me the other day, "So you're almost done with everything, right?" I know he meant well, but it took a great deal to stay composed.

I've had a good weekend--no rads for two days, and my legs are feeling better (thigh muscles are often painful). Back to the treatment center tomorrow on a beautiful snowy day. Hope you all are doing well!

~Trudy

[Anonymous]

09:15/ my neuropathy is so bad I feel like I am being stabbed with knives in my feet and up and down my legs and I can't walk.

[Anonymous]

Anonymous wrote:09:15/ my neuropathy is so bad I feel like I am being stabbed with knives in my feet and up and down my legs and I can't walk.

I had neuropathy. They put me on gabapentem. Reduced the neuropathy, but made me feel stupid. What worked for me was a combination of Acupuncture and lidocaine patches.

[Anonymous]

09:15, I'm sorry about your neuropathy. How long ago were you treated? I hope it will improve over time. Like 08:46, I've heard that lidocaine patches can prove helpful.

~Trudy

[Anonymous]

Lots of love and prayers to all of you.

[Anonymous]

Love and prayers for you all. And your families, too.

~ friend of "Ethan", a young teen with stage 4 cancer.

[Anonymous]

I just want to wish all of you the very best of luck.
And I sincerely hope the loonies stay out of this thread.

[Anonymous]

Anonymous wrote:I just want to wish all of you the very best of luck.
And I sincerely hope the loonies stay out of this thread.

If you se a loony, report it. Jeff will probably take care of it.

[Anonymous]

09:30, I'm sorry to hear about your friend. What sort of cancer does Ethan have?

Are you familiar with St. Baldrick's? It's a charity that raises funds for childhood cancer research. Every March, various places host St. Baldrick's events that involve shaving people's heads to raise money. A good friend of mine is the emcee every year at a local bar (she's shaved her head for years, which amazes me); she began participating after a friend lost her daughter to cancer.

Re: loonies, there's only me right now.

~Trudy