its back

[Donna H]

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]

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]

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]

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]

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]

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]

Donna

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

Paul

[Laurel]

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]

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]

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]

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]

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]

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]

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]

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]

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


all the best
caya

[Mary Jo]

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]

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]

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

My thoughts are with you!

Janis

[Becky]

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

[Catherine]

Hi Donna, just checking in after not being on line for quite a few months. So sorry to hear your news. I concur with the others, treatment has come to be more and more sophisticated and definitive. No fun though to have back pain and not be able to sleep on your back. Sending hugs and support your way. We will be here for you!

[Donna H]

I had my second chemo last Friday. Yesterday was miserable but I feel human again today so hot damn to that! I get a pet scan on the 28th - trying not to pin too much hope on the results, but hope springs eternal. My husband I are going to take a quick trip to the ocean after the scan - be gone for about a week. I do not want to hear my results until I see my doctor on the 7th of May. Wish me luck not peeking at the patient portal! BTW- I'm bald again. Sure does save time getting ready in the morning.

[Mary Jo]

Donna...thinking of you and praying for you tonight. I hope your trip to the ocean is wonderful and you and your husband are able to enjoy this time away.

[JessicaV]

Hi Donna, I just dropped in to the page after months away. I am so sorry to hear this is happening to you. I am so glad you are sharing this time and experience with the group, where there are so many good news stories of quality survival in Stage 4, and you can share hope and despair and be here however you are. I send love and hugs and enormous good wishes that the days will each be better and the treatments you go through will bear fruit.

[Melissa]

Donna,
Thinking of you and wishing you and your husband the greatest time at the beach!
-
Melissa

[Donna H]

It was great to get away and to put my toes in the sand. Tomorrow is treatment day and I will get the results of my pet scan.

[Donna H]

Hi All
Friday was treatment and pet scan results. Overall, scan results were positive. 2 liver tumors are gone (i do have a tiny new one but that probably popped up while waiting to start chemo after spine surgery). Large liver tumor is stable. Lymph, lung and spine tumors have gotten smaller. The only question areas are bones (femur and pelvis) - those are lighting up like crazy but most likely because of the Zaxio shots that encourage marrow growth. So we wont really know until shots are done.

I will see the radiologist on the 24th. Spine surgeon suggested rads to my spine because entire tumor couldnt be removed. Oncologist also said there are other options for my liver tumor should traditional chemo not do the trick.

I see the throat doctor on the 26th. It would be great to be able to talk more normally! Especially since I am in outside sales and usually talk on the phone a lot.

This chemo cycle seemed a little more tolerable. So maybe I am trending in a positive way!

[Laurel]

Good morning, Donna! I have been gone from the board for a bit. Whirlwind of buying a new home and moving had me snowed under.

Overall, your scans appear promising. I think you are doing Taxol as your chemo? I hated that s*^t to be bluntly candid. It gave me such neuropathy in my feet that I dubbed them my "Herman Munster" feet, a reference to the old comedy The Munsters from the 60s. Remember it?

Anyway, I took L-glutamine which helped greatly and I have no permanent peripheral damage. The other alde to make Taxol more tolerable was to take 2 Aleve about 36 hours post infusion and take them twice daily for a few days. Aleve (and timing of the first dose at 36 hours--very important to "get out in front of the pain") was a Godsend. Oddly, I did not realize the importance of taking it BEFORE the nerve pain began. Then I would try to address the pain with Percocet which literally knocked me out for an hour and a half only to awaken with the pain untouched. It was just prior to my final infusion where my Onc instructed me to take the Aleve early and to continue it for a few days. That was my easiest infusion! Ah well....

https://pubmed.ncbi.nlm.nih.gov/11350883/

Did you discover whether your mets are indeed Her2 positive? Hormone positive? Curious.

Wishing you Godspeed. Praying for good results from treatment and freedom from pain.

[donocco]

The Aleve news is interesting. Try to take it with food if youdecide to use it. It is an NSAID and can upset the stomach. Of course tell the oncologist you are taking it as it can reduce fever and possibly mask any infection that might occur. I do remember something about using Aleve for fevers in oncology that make its action different from some of the other NSAIDS (Motrin etc). To be honest I forgot the details and Ill look it up.

Paul

[Donna H]

I was told to take Aleve and Claritin for the 5 days I am getting Zarxio shots. So I do. The Claritin doesnt work against nasal drip so I always have tissue at the ready. Zarxio doesnt seem to work as well as Nuelasta but my insurance wont cover Nuelasta.

[Donna H]

Also, when I finally read the initial and second pet scan, it turns out the cancer is also in my pelvis and lungs. Seriously, HER2 is fast moving. Crazy.

[Laurel]

Sorry to hear the beast is in your pelvis and lungs as well. So it is Her2 positive mets? Really sorry you are suffering and will pray you get some relief. Chemo is a tough go. No doubt about it. How long until your next scan?

[donocco]

Laurel

I noticed on your signature line you switched back to Tamoxifen.
If they are using antidepressants for hot flashes you have to be careful which
one they use. Tamoxifen is an inactive prodrug that is changed to an active form by means of the enzyme Cyp2D6. Antidepressants like Prozac / Paxil Wellbutrin or Celexa inhibit this enzyme and prevent the formation of the active drug. Effexor Celexa and Pristiq are much less inhibitory toward Cyp2D6'. I dont want to alarm you, just a heads up.

Paul

[donocco]

I meant Cymbalta as one you shouldnt use with tamoxifen not celexa

[Laurel]

Paul,

I stopped anti-hormonals after 5 years. The reason I switched back and finished with Tamoxifen was due to joint issues with Femara. I have never used anti-depressants, but it is good information and glad you shared here. Like many cancer patients, I had to weigh QOL with the small fraction of decreased incidence of recurrence provided by an additional 5 years of anti-hormone treatment. I may live to regret that decision, but as with so many decisions in life, one plays the hand dealt and lives with the consequences.

[Donna H]

Yes, the cancer is HER2 again, or should I say still HER2? Not sure.

[Catherine]

Donna, wishing you better days ahead. So sorry that you have to go through chemo again. I’m hoping the soreness is going away in your back. Good thoughts and prayers coming your way!

[Donna H]

My treatment day is being moved up from Friday to Thursday to accommodate getting a Nuelasta shot. I had been getting the Zarxio shots (5 shots, starting 5 days after chemo, administered at home). The Zarxio shots havent worked. I ended up with stage 4 neutropenia each cycle. Apparently that isn't good. Of course my cheap insurance won't cover the on-body Nuelasta which is why I will have to go back to the oncology office for the shot. But hopefully this shot will work. It did in 2014 so I anticipate it will again.

[Laurel]

Donna,

Sorry, been a one woman wrecking crew getting the old house primed for sale. Anyway, just popping on the board after a long absence. I was instructed on how to administer my own Neulasta injection post-infusion so I could avoid traveling back for the jab. I really did not suffer from nausea unless I was in a car, so self-administration was a good compromise. The injections were sent to my home and I kept them in my fridge.

[Donna H]

I had my fifth chemo on the 18th. My red blook count was low but not too bad. Everything else looked good enough on the 18th. This cycle has been the worst by far. I fainted on Tuesday. Food runs right through me so I am popping amodium like candy. So far, today has been a better food day. I dont know if it was the 10 radiations in between cycle 4 and 5 or just luck of the draw but yikes. Fatigue is off the charts. I see my oncologist tomorrow. It will be interesting to see how my bloodwork looks. My treatments are just taxotere, herceptin and perjeta. I really thought having only one chemo would be easier.

[jaykay]

Donna, hang in there. When I was going through chemo, Imodium was like eating candy - did nothing for the runs. Ask your doc for a prescription for lomotil - it is a controlled substance but works way better than imodium. Drink lots of gatorade and water.

xoxo
janis

[Mary Jo]

Hi Donna,

I was just checking in and wanted to check in on you. I hope you are handling treatments well.

[Donna H]

Hi All-
I finished 5 chemo cycles. Onc decided against the 6th. I was incredibly sick after treatment 5. I will continue with herceptin and perjeta every 3 weeks. I need to see a surgeon about possible direct to liver chemo treatment. The largest liver tumor wasn't affected by chemo. My last pet scan results were overall good - nothing new, nothing larger than before. But I still have active disease. The liver tumor is the onc's biggest area of concern. I suggested cutting off the bad part. Guess that isn't an option. I have surgery next Thursday - I have paralyzed vocal cord, most likely a result of the cancer affecting the nerve. The vocal cord wont be fixed, instead it will be pushed over (to the middle) so the working cord will be able to reach it and apparently that is what makes voice. Who knew? It's been since mid February so I am really looking forward to getting my voice back.

[donocco]

Donna

I read something just now about local radiation therapy to the liver for breast cancer to liver mets. Is this a possible option for you?. It has been used with some effectiveness it seems.


Paul

[Donna H]

Hi Paul-
Yes, my oncologist mentioned radiation pellets into the liver as another option. Im glad I have options still.

[donocco]

Donna

Radiation does sound like a possibility. Like anything with cancer it is somewhat of a crap shoot. Some patients respond extremely well others dont.

This may sound crazy but Ive been thinking this way so lo ng Ive long " losyt my rocker " and cant tell the difference anymore. There is something in cancer called the copper zinc ratio. If you were to take a blood test and get the results for copper and zinc blood level (I think it is measured in microgram %) you probably would have a copper zinc ratio of 1.5 or higher. With cancer the copper levels rise and the zinc levels drop. Look up the copper/zinc ratio for yourself. I always wondered if normalizing it by taking zinc supplements and raising the zinc blood level would be helpful in a adjunct to treating or even preventing cancer as this would lower the copper/zinc ratio.

I worked as a pharmacist 43 years ago at a big cancer hospital and it was
an experience. For years I had a cancer "scare" I wont go as far as to say phobia. Ill take it shorter than I want. I have benn taking zinc supplements (my Dr. knows; she shrugs her shoulders) as a possible cancer preventitive and raided my ratio to a good level. Will this be a preventitive? Who knows. It cold make the situation worse. The slow pace of progress with cancer has made me shrug my shoulders. As a treatment for cancer making things worse
is possible. Very possible. Cancer cells use zinc also as a cofactor for enzymes etc. If you find yourself interested you can discuss this with your oncologist. Dont self medicate with over the counter zinc.

Paul

Forgive any misspellings

[donocco]

Let me add something to the above post. I wrote it when I was rushed and a bit tired. Thee was an experiment where about 100 women with breast lumps were biopsied. I think about 22 of the women had lumps that were malignant. As stated before, these women tended to have the highest copper/zinc ratio. From what I remember, you could diagnose which of the lumps ere malignant, just by considering the CU/ZN ratio with over 90% accuracy.

What about the benign lumps. If you examine sections of these lumps under the microscope, some of the fibrocystic breast cells looked like normal breast cells. Others had larger nucleuses and abnormal shapes. The same basic thing. The more abnormal the cell morphology of the benign lumps, the higher the Cu/Zn ratio also with close to 90% specificity. Apparently you could diagnose fibrocystic cells also simply with a blood test and determining the copper/Zinc ratio. To me this was fascinating. Ill try to relocate this article. I read it years ago. I think this is when I started thinking about using zinc supplements to lower the Cu/Zn ratio and possibly prevent or even help treat cancer. This is exactly how medical discoveries were made in the 1800s,

Paul

[donocco]

Let me add one more thing about the copper/zinc ratio and thats it. For one thing it may be the ratio that is important not the actual concentration of either zinc or copper. This has nothing to do with Copper reduction to prevent angiogenesis using the copper chelator, Ammonium Tetrathiomolybdate.

You can have physiologically normal concentrations of both copper and zinc (Its is a range of numbers not a single one) and still have a "bad" ie "cancerous" copper zinc ratio. This abnormally high Cu/Zinc is seen in many kinds of cancer, even in Leukemias.
People in the last stages of cancer often have CU/Zn ratios of over 2. Usually the copper level increases and the zinc level decreases. There are exceptions where only the copper level rises but this is not the rule.

It appears that good zinc levels encourage apoptosis and inhibit cancer proliferation and spread. Think of microbiology. A certain bacterium will need maltose to grow in the culture, another proprionic acid, while another one will need fructose. Possibly (very unlikely I admit} cancer thrives when the blood has a high copper/zinc ratio. To me this kind of possible treatment might have a beneficial effect, ie giving zinc supplements to lower the copper zinc ratio by raising the serum zinc level. Stranger things have happened.

Unfortunately cancer has become a big industry. I firmly believe any real advances are going to come from the "peanut gallery" not from the pharmacologists at Pfizer or Novartis. Please forgive any misspellings

Paul