its back

Donna H · 02-03-2021, 04:37 PM

Hi Y'all
Not happy about the news, but I was DX last Thursday with metastatic cancer - liver, spine, lymph nodes and femur. Awaiting brain scan next week. I was first DX on March 13, 2014, stage 2. Have been NED ever since...until I wasn't. I am waiting to find out if the cancer is HER2+ again. I get a port tomorrow.

I take comfort in knowing there are many long term thrivers on this site. I'm only 56. I just started my own company 3 years ago. Business is going great, life is good. Oh, the plans we had. Hopefully this is just a slight hiccup in those plans.

Stay tuned. I'm sure I will be asking for your advice and words of wisdom in the coming days.

Thanks!

Becky · 02-03-2021, 08:27 PM

We are here for you. What a blow after 16+ years. I am sure it was unexpected. What were your symptom to know something was up?

What was your initial treatment plan and did your onc give you any indication of what your plan going forward will be?

Hugs from me

Melissa · 02-04-2021, 05:23 PM

Donna,

Many women on this site
And many I know
Personally reoccurred years ago and are
Doing incredible. This gives me hope and yes - a slight hiccup!
Keeping You my thoughts -
Melissa

caya · 02-05-2021, 12:19 PM

Keeping you in my thoughts, Donna.

Like Becky, I am wondering what were your symptoms this time around.

Lots of newer meds, treatments etc. now to help you in your fight.

all the best,caya

Donna H · 02-05-2021, 12:35 PM

I really didnt have any symptoms, except back pain and weight loss. The spots were found on a follow up MRI of a liver hemangioma. And then off to get a biopsy of the new spots.

The back pain and weight loss were originally chalked up to recent gallbladder surgery/slow recovery from that. My GP was the doctor who really took the weight loss seriously.

caya · 02-05-2021, 01:09 PM

I remember when I was going to my onc. for my yearly check up, I was still on Femara - they weighed me as usual, but I had lost 25 lbs. that year. - On purpose, I needed to drop it, and I did. But my onc. was concerned, and ran a battery of tests just to make sure.

Glad your GP took it seriously.

In the Jewish religion, we have a saying- Man plans, G-d laughs.

Please keep us posted with your treatment plan.

all the best
caya

donocco · 02-05-2021, 04:53 PM

Donna

Very sorry to hear this. Be sure to let us know what medications you will be treated with

Paul

Laurel · 02-07-2021, 11:10 AM

Donna,

Unhappy news for sure, but you are a warrior and as you say, many on this site have lived long lives at Stage 4 and thrive. You will be one of them! Please circle back with updates. We are here for you and in your corner! Boxing gloves on!

You do not have your stats in your signature. Curious to know at what stage you were dx'd in 2014 and what your hormonal status was as well? You do not have to share if you feel that is too personal. Thinking if hormone positive that characteristic may open up more treatments for you.

Pamelamary · 02-07-2021, 09:14 PM

Hi Donna,
It's 9 years since my metastatic diagnosis - still stable on Herceptin and Letrozole! A real roller coaster ride, but you will feel better once you have a treatment plan in place.
Best wishes.... Pam

Lien · 02-10-2021, 05:56 AM

Oh Rats! Not what you wanted to hear. But as you say, lots of mets sisters are doing just fine. I hope you will be one of those. Keep us posted and let us know what you need from us. We are here for you.

Donna H · 02-10-2021, 08:42 AM

I was DX in March 2014, stage 2. No nodes involved. 6x TCH then just Herceptin for a year. Brain scan, femur xray and echo tomorrow. Still waiting to find out if it is HER2+ again - first test was inconclusive. It is hormone positive but not sure of specifics. I need to get that paperwork from the onc. The more I read the results, the worse it all sounds. Especially the pet scan. I see my onc on the 19th and I plan to ask for all the facts.

The crazy part is I had my gallbladder removed on Oct 13th and none of this was evident to the surgeon. So these mets have popped up since then.

Waiting is the pits. Thanks for listening!

Donna H · 02-12-2021, 11:34 AM

Hi Again -
I had my brain scan, as well as MRI of my spine yesterday. Dang the brain scan really makes the seriousness of all this very real. Plus all the noise of the machine and the crazy "cage" used to keep your head from moving....not a fan. And now I wait for results - see the onc on the 19th.

Laurel · 02-23-2021, 01:23 PM

Hey there, Donna!

Checking back after a few weeks off and see you have been riding the scan roller coaster. I was never a fan of them either and you are so right in saying how they make you feel the weight of the diagnosis. I also might add that you never feel more alone than when you enter a scan, wheel into surgery, or toe up for chemo. No one can really "go" with you. It is a lonely experience that is difficult to explain, but I know you and those here know what I mean.

Soon you will have the facts before you and can devise a plan of attack. It is true that although the treatment itself is scary, getting started is empowering emotionally. Please share an update of what you learned from you Onc on the 19th and how you intend to fight the beast.

Donna H · 03-04-2021, 02:59 PM

Sorry for my absence. Turns out the spine MRI showed a tumor compressing my spine. So I had to have surgery 2 weeks ago. Most of the tumor was removed but some was too wrapped up in the spine and nerve that it was left. I start chemo, Herceptin and Perjeta tomorrow. Rads will follow just not sure when. My back is still crazy sore - I have a foot long incision. So treatment tomorrow could be a real challenge - I can't lay on my back at all and sitting is a challenge - need a pillow or 2. One a positive note - the brain scan was clear.

I am not looking forward to taxtore again....side effects are the pits. But if this buys me time, then so be it. Any insight, words of wisdom are welcome. Thanks!

donocco · 03-05-2021, 01:01 AM

Donna

I doubt these are words of any wisdom but there is a clinical study going on using pyridoxine 50mg three times a day plus 1000mcg injectable B-12 once a month to help or reduce peripheral neuropathy from chemo . I have heard of Vitamin B6 (Pyridoxine) having been used before. You could talk with your oncologist.

Paul

caya · 03-09-2021, 10:04 PM

Good luck Donna with your treatments.
Glad the brain scan was clear.

all the best
caya

Mary Jo · 03-14-2021, 04:13 PM

Hi Donna,

I came on to check in on everyone tonight and I am saddened to read that your cancer has returned. My heart hurts for you right now and I lift you up in prayer. I ask God to give you the strength and peace you need to get through your treatments and all the emotional crap that goes with it all. I know He will and I am thankful for that for you. Hang in there fellow sister.....You will get through this...You will...one day at a time. Sending you my sincere empathetic love and a gentle hug.

Donna H · 03-30-2021, 07:39 AM

Had my first chemo, along with second round of Herceptin and Perjeta on Friday. Yesterday was tough. I didnt expect to be so hard hit by the first chemo. Last time (6 years ago) my first cycle was much easier. Guess age isn't always our friend. My back has been very sore, achy, stiff. The neurosurgeon said chemo would inflame the tumor (before it starts to shrink it) so I guess that is the cause of the current discomfort. I still sit here in disbelief that I am once again going through chemo. Cancer is such a mental game. Thank you for listening.

jaykay · 03-30-2021, 02:23 PM

You can do this, Donna. And yes, it is such a mental game.

My thoughts are with you!

Janis

Becky · 03-31-2021, 05:04 AM

Rest. The discomfort is the cancer cells dying!! Be gone. We are here for you.