my first iv treatment

[Jhshl512]

I’m starting Enhertu on Tuesday. I’m very anxious about this but was told this is my next line of treatment. I will have an infusion once every 3 weeks. I have bone Mets throughout my spine. I just finished radiation and that has helped somewhat. I’m still in pain am taking morphine 3 times a day. Cancer really sucks. I guess I just needed to vent. No real question. Thanks for listening 🙏🏻

[SeattleMom]

Hi, J!

I’ve been on Enhertu for 3 months; biggest complaint is extreme fatigue in first week following infusion. Both my red and white cell counts tend to drop. Hope you fare better. I just turned 74, so some of fatigue is undoubtedly due to age.

God bless you! 🙏🏻🙏🏻💗💗

Linda

[Jhshl512 in reply to SeattleMom]

Thank you for your reply. This is such a tough road we are all on but having each other does help.

Lori

[mariootsi in reply to Jhshl512]

Lori, having each other is a godsend. Let us know how it goes.

[Bettybuckets in reply to SeattleMom]

fatigue is Thr worst! I thought it was my age or the cancer but when I went onto cape I went back to normal… so now I have tons energy but no ability to walk because cape makes my feet feel on fire. I do get to go swim though and that feels good on my feet. The point is thank you for being a pioneer- we all want to hear what to expect on Erhertu as many of our oncs have told us it is in our future.

[Jhshl512 in reply to Bettybuckets]

thank you. I will keep you posted.

[SeattleMom in reply to Bettybuckets]

Will do, Betty! 💗💗

[Bettybuckets in reply to SeattleMom]

Linda- I hope that you do well in Erhertu and get some energy back to enjoy yourself as much as possible.

[love2golfwell]

Best wishes for good success on your new treatment. I hope and pray you don't have side effects and that this new protocol will work well for you. Sending hugs.

[Jhshl512 in reply to love2golfwell]

Hugs right back to you and thank you.

[Verbena1]

Hi, just sending along good thoughts to you…I had the same, mets to spine and in excruciating pain from the nerve/compression - also had radiation for it and then started Enhertu shortly after

The day of my first IV, I was begging them for pain meds and was also given Morphine. The Enhertu worked very fast for me (2 weeks or so) and the mass essentially melted. It was a miracle drug for me, I hope the same happens for you. It’s a very good treatment in terms of effectiveness~

It did make me nauseous and tired for 7-10 days or so days after each treatment, so I ended up asking to switch to once per month instead of every 3 weeks so I’d have time to recover. My oncologist agreed - I was on it 7-8 months.

Keep us posted on how things go!

[Jhshl512 in reply to Verbena1]

Will do. Thank you for response

[Adele_Julia in reply to Verbena1]

Are you no longer on it? What did you move to? Heart hugs

[Verbena1 in reply to Adele_Julia]

Hi, it was my 3rd line of treatment, and once it stopped working (3 mo ago) I went onto Xeloda and Tukysa…they’re a$$ kickers too but they are working so I’ll take it for now~

[Adele_Julia in reply to Verbena1]

Good ! I just moved from Piqray to Xeloda. I have a trapped lung so the Enhertu terrifies me since it’s known for causing interstitial lung disease. I can’t afford to lose the only lung I have left

[Verbena1 in reply to Adele_Julia]

Glad you’re on Xeloda then! It works exceptionally well…it also shrunk the mass very quickly. Keep that good lung! 🌸

[Adele_Julia in reply to Verbena1]

Awe thank you ! I am grateful that it’s working. I’m on cycle 2 and am praying that these skin Mets that have started forming on the opposite breast as my mastectomy disappear. My onc says if this doesn’t work, it’s back to IV chemo that I did when first diagnosed in 2019 Stage 2

[Verbena1 in reply to Adele_Julia]

I feel for you! IV chemo is the one thing I have always told them I won’t agree too. The chemo pills are as far as I’ll go. Rooting for your best outcome~

[Ntash01 in reply to Verbena1]

Verbena - what does your medical team say to that? I feel the same as you! I’ve not had the conversation with my onc, but I’m guessing she won’t be happy.

N

[Verbena1 in reply to Ntash01]

Ntash - I’ve told them since 2020 that I’d rather die than ever agree to that. It’s just a personal choice because I’ve seen so many friends and family get it and I’m not ok with the long term damage.

They agreed back in 2020 to do something else, which ended up being hormone / targeted therapy, which was effective (til it wasn’t). The part I’m nervous about is that I’ve already gone through so many different med combos, and they’re bringing up chemo again as a possible future option if they run out of ideas. That’s when I jump ship to a clinic in Mexico or at the very least, another onc clinic that may have add’l ideas!

Sometimes we forget that it’s our body and we have the final say so. Doctors know best in many cases but when my gut tells me not to do something, I don’t do it…

[mariootsi]

Cancer does suck! Wish you much success with Enhertu! Pray you have no side effects

[PJBinMI]

Living with cancer, and cancer treatment does suck! Big time! My grandmother lived to be 102 and while her last ten years sucked (memory issues), when she was my age, 77. she baked, gardened, fed a bunch of chickens every day and enjoyed a good life. Became cured of endometrial cancer in nher 70's, too. So precancer, I hoped for a good many years of health. About the pain....pre cancer, I was on Celebrex for arthritis. It worked well formthat bone pain and when I've had to go off it for some procedure, I've had alot more pain in bones with mets, than when I am on it. That's something to ask about. A palliative care NP might be really helpful, too. At least a wonderful woman PC NP helped me with pain and itching. Palliative care focuses on symptom and side effect management. Do let your onc know just how sucky you feel... infusion nurses know alot, too. Do you have a port? I love mine. They make infusions so much easier. Best wishes and hugs to you!

[Jhshl512 in reply to PJBinMI]

yes I have a port and a palliative care doctor. They are awesome with pain control. I don’t like that I’m on morphine 3x a day but it works. Best of luck to you and thank you for your reply

[PJBinMI in reply to Jhshl512]

We cancer patients are probably the people who benefit the most from morphine, and if it works, it's alot less worth worry than the blasted cancer that causes the pain! It would be interesting to see statistics about what morphine is prescribed for. I think doctors are much more comfortable about us being on it than when it's prescribed for other kinds of pain. I used to be a chaplain at a big hospital with a cancer unit and most of those patients were getting morphine. It was my impression that it's best for cancer pain. Not fun to think about!

[PJBinMI]

AS

[Jhshl512]

yes morphine is a blessing and also a curse. I couldn’t even imagine the pain without it. Thank you for your reply🙏🏻🙏🏻

Lori

[MiataMama]

I have been on Enhertu since July. My cancer has responded well. Last scan showed almost all resolved. My tips for dealing with side effects is to stay hydrated, eat small, frequent, nutrient dense meals which include fiber and protein. Being as active as possible helps, even if it is just a short walk or some chair yoga. Rest when you need to. Remember there is a battle going on in your body, and the Enhertu is on your side against the cancer, tracking it down and taking it out. Prayers for your success with this treatment.

[Jhshl512 in reply to MiataMama]

thank you so much for your wonderful advice! It sounds like it’s working for you, which is great! I’m so glad you replied. Sending prayers to you to stay healthy 🙏🏻🙏🏻

[HbbM in reply to MiataMama]

how have your blood counts been on it? Specifically the red blood cells and hemoglobin? Glad it’s working for you!

[MiataMama in reply to HbbM]

My red blood count and hemoglobin counts have been slightly low. I had shots for that and low white blood counts as well. This week the white blood counts were back in the normal range and the RBC and Hemoglobin were higher, so no shots. Strangely, I had just recovered from Covid and a 12 day cruise.

[HbbM in reply to MiataMama]

what shots do they give you for RBC being low? Glad you’re recovered from Covid. A 12 day cruise sounds amazing!

[DorothyR]

Hi,I am going to have my 13th infusion on Wednesday.

For me, the first treatments I had alot of fatigue a few days after. It lasted about two or three days. After that I was able to push myself to get through the fatigue. I just had to listen to my body.

As time progressed I don't get the fatigue like I was. I feel almost normal.

All my scans are stable (I have bone mets and brain mets)

Good luck on your treatment.

[Jhshl512 in reply to DorothyR]

you Dorothy are my inspiration!! Thank you for your positive response. I only hope I do as well as you!!🙏🏻🙏🏻. Lori

[Ursula_I]

hello

Wishing you all the best on Enhertu, I'vd been on it for five months, it hasn't been miraculous for me but at least no progression was seen on my scan. I've got more scans in a few weeks... praying that I will still have more time.

Side effects mainly exhaustion for about a week after the infusion.

All the best to you! There have been some super positive stories on here!

Lucy

[Jhshl512 in reply to Ursula_I]

Thank you. I wish you all the best on enhertu. I’m trying to stay positive and women like you help me do that. I pray for your continued good scans. 🙏🏻

Lori🌹

[Ursula_I in reply to Jhshl512]

thank you Lori.

[Tazi127]

I am on my second round of enhertu srarting may 8. When I first had the round two days after my infusion were fine the third day I was flat on my back I felt like I was going to faint nausea diarrhea severe weakness by about day 6 of this I decided to go to an infusion Clinic and got 1000 ml of normal saline for hydration purposes and that helped a whole bunch. When I go Monday I'm going to ask the doctor if he can prescribe that or add it to my regimen I feel the hydration really helped me and hoping it will knock down the symptoms and side effects after this next treatment. After the 7 Days of hell I felt great I've been running around shopping doing small amounts of gardening able to walk my dog able to clean my house Etc within reason. I have Mets to my entire spine and my hips and was diagnosed in 2020. My cancer changed from estrogen positive her two negative to triple negative. So I will be anxious to see what the next pet scan shows for me after my third or fourth round of this treatment. Best of luck to you. Same treatments with the same effects. I've read a lot of people who can use the zeloda but I couldn't tolerate it at all after the second dose I had to stop that one. So far the in her two is okay at this point. Best of luck again. Tazi

[Widdershins3]

Hi! I just had to stop Enhertu after an incredible run that saw my cancer levels drop like a stone--but then I developed "ground glass opacities" in both lungs recently. I'm still literally mourning having to go off the best drug yet. Plus, I had no side-effects! Since it's IV, I had a port installed early on and it works well--no nurses damaging blood vessels anymore. I would give ANYTHING to go back on it, but it's looking unlikely. I hope so much that you have great success with Enhertu and that your side-effects, if any, are manageable.

[Jhshl512 in reply to Widdershins3]

I’m with you. So far it’s been great. I get my 3rd treatment on the 6th of June. I guess my scans will let us all know. So sorry it didn’t work for you