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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!

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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.

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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.

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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.

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

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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.

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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!

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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.

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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

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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.

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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.

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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?

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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

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

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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.

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

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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!

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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.

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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.

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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.