WHY would I put myself through this?

My 10 cents:

I haven't met the doctor but she has a very respectable reputation as you know. My sense of this is that something went wrong in the chain of command.  She IS responsible for the chain of command. My guess is that somebody in the process between the doctor and you left you high and dry. Even if the doctor herself failed to include the usual meds in the order, a chemo nurse has enough experience to at least raise the question in your behalf before you do treatment.

In another forum, a patient posted in crisis.  She had an onc fresh out of school and as a newly diagnosed she wasn't sure what was the norm. It was obvious to me that she was in deep doodoo with a high fever, and he should have recognized that she was compromised and hospitalized her immediately and he did not and left her at home. She ended up in the hospital with lung problems that have continued ever since over the years. It happens. I would report the symptoms, and not leave them out.

Somebody is responsible for what happened to you, and that includes the doctor running the show. But I would want to know exactly where things went awry.

AlaskaAngel

LadyGrey - your fever and vomiting really sound like what happened to my DH - it was a hypersensitive reaction to the platinum drug. Although it all happended on the night of the treatment.

I just remembered, I was also given Onadestron to take home with me to take for 2 days. So, Dexamethasone, Emend and Onadestron and whatever else they infused - I never asked.

Didn't you see the onc on day of  tx - my onc comes to visit you in the treatment place EVERY time and personally calls back if I leave a message.

One of the other ladies on here said she had a bad 1st tx and then refused to go on, so they gave her just the herceptin - that might work.

Hey - threaten to sue her - that should make her pay more attention to your plight

Sue

When we are healthy we can be a little more loose with temperature than we can with plunging blood counts after chemotherapy, because those blood counts are what indicate whether your white cells can fight off an infection or not. In this case you are not being hypochondriac. Cancer patients are operating under different conditions.

Don't panic, but DO call.  There is no way to know what type of infection is causing the fever without being checked.  After chemotherapy treatment your counts continue to drop daily until they reach a low.

Please have someone who is able to log in keep us posted as to your situation.  We care.

AlaskaAngel

TLG - I would take some Tylenol asap and call or go to the ER if the temp goes up.  They should see you immediately, or at least segregate you from the masses in the ER due to being a chemo patient.  You may get some more expedient treatment, or at least some IV anti-nausea/pain med/hydration.  I am concerned about the possibility of a UTI from your bath causing your fever.  I doubt your white blood cell count would have fallen fast enough at this point for you to fall victim to an opportunistic infection.  Dehydration can drive a fever up as well and you are probably pretty dehydrated at this point.

I am so sorry that this has been your experience, but I think you have been mishandled by your onc office.  They failed to give you adequate pre-meds and instructions.  The way I would expect this to be handled if you go forward with any more chemo is this:  pre-med the day before with steroid.  Day of chemo you need Ativan or Xanax, Emend or Aloxi, Benadryl, and Decadron (steroid) in your pre-med drip and some Tylenol orally.  I think you ned a prescription for Emend for nausea - it is the Cadillac of anti-nausea drugs.  Clearly nausea and vomiting is a problem for you.  I was advised to start anti-nausea at 9:00 p.m. day of chemo, 9:00 a.m. next morning, continue like that for at least 72 hours, and don't wait until you have nausea, take it before.  I was given three different anti-nausea drugs with instruction that if the first one didn't work, go immediately to the second, and then to the third.  The combination of drugs did not work with the same mechanism so they could be taken one after the other without a problem.  I am not sure why you were pre-medicating for constipation.  One doesn't know if constipation or diarrhea will be a side effect.  You may have set yourself up for your southern GI problems by taking anti-constipating meds prior to chemo.  I was never constipated, only had diarrhea.  You should continue with steroids for a day or two after chemo.

I had a bad headache with chemo #1 - if your C is Carboplatin it can cause a headache as well. The good news is that I did not get it on subsequent tx. Your headache is possibly also due to being dehydrated.

Let us know what is happening. We are all concerned.

Excellent advice SpecialK - one thing I had after the first tx was a grumbly tummy - not due to constipation or diarrhea. My onc prescribed Somac which really fixed the problem.

LadyGrey,

Are you scheduled for lab testing soon for your onc to follow your blood counts and monitor for fever, etc.?

A.A.

AlaskaAngel - the nadir for the drop in WBC is 7-9 days from infusion, TLG is only at day 4-5, that is why I questioned it being an opportunistic infection.  Not sure if Neulasta was in the picture, but I am assuming.  Usually with the first expansion from Neulasta one's WBC go quite high. 

TLG - I am sad that you were so unsupported - not feeling you had a medical professional assisting you - that is your oncologist's JOB!  This should not have happened to you.  That being said, you know a lot more about how you react to chemo so I think a lot of your severe side effects could be mitigated.  I certainly understand why you might chose not to continue though in light of how this played out.  Please keep in touch so we will know how you are doing.

Sorry...just looked at my post. Not iv antibiotics but iv anti nausea meds.

Lady Gray, My biopsy removed 2 Cem dx idc, her2+++ and the 2 surgeons I've seen both recommended chemo and herception. I've made it clear I'm not taking chemo. I will talk to 100 oncologist if I need to in an effort to find the one who will administer herception without chemo. And they had better prove to me that I really do need herceptin. I'm going to get a second opinion on the biopsy pathology and after surgery final pathology findings. I'm asking for a pet scan, markers and etc.

What Alaska angels says about herceptin + chemo for early cancers make sense...where's the studies with herceptin alone for early stage cancers?

TheLadyGrey, Your whole journey saddens me.  I hate to think of all the people who have to suffer these extreme effects from this horrible circumstance.  We hire these docs to do a job.  They charge enormous amounts and then let us down.  It's verging on criminal in my mind. It solidifies in me my decision not to do chemo.  I grappled with that decision and in the end chose not to do it.  Something in me wouldn't let me.  It's not because I didn't trust my doctors.  I've always listened to and respected them.  I really can't explain it except to say maybe it was divine intervention.  

I asked myself the same question....WHY would we do this to ourselves?  Drugs, drugs, drugs, drugs, and more drugs for the side effects of drugs.  Uggghhh, I can't get my head around it. 

In the end, I chose to make better lifestyle choices (my diet sucked, I was highly stressed, etc) and took no further treatment (had lumpectomy) until recently when it was discovered that the cancer is also in my lymph nodes.  I decided it's time to do more.  But still...I can't/won't do chemo.  I value my health, my time, my quality of life.  I chose another route and I am currently getting DMSO, high dose vit C and Vit B17.  The side effects are minimal.  I had a headache off and on for the first couple weeks and a fever for the first 3 days but nothing alarming.  I took Tylenol or Advil...nothing else.  I finish my treatment in mid December (40 days total) and will have a PET scan to monitor it's progress.  I am confident there will be progress.

(((Hugs))) hope you feel better!!!

Dear TheLadyGrey - I am very very sorry to read about your bad traumatic experience with chemo.  I really hope you will be feeling better soon.  I will not bother you with any questions until you are feeling better.  I will read your posts about your experience carefully.  I hope you and your family will have a Happy Thanksgiving.  BlairK

LadyGrey - your husband is right unfortunately. Demand to see that woman and put her in her place!!! Remember, the first one is always the worst. She may agree to continue with herceptin only - see what she says. Seeing you had LVI - sounds like chemo would be a good idea - I didn't have any but still did the treatment. I know I wouldn't have had to have chemo if I hadn't been HER2 - the thing is, it's a nasty beast and unpredictable.

Glad to hear you are feeling a bit better.

(((((HUGS)))))

Sue

fluffqueen01,

This may or may not be off-subject in terms of recurrence, so depending on your interpretation, I apologize. I just want to say that although I am too far out from treatment now to be eligible for most clinical trials as a bc patient who is NED -- but...

Although I am not diabetic and have no other chronic diseases than bc, because of difficulties with chemopause-caused weight gain I got a referral to a cancer center dietitian and then to an endocrinologist, and requested metformin. I wanted it because there are so many clinical trials running for cancer, many for bc, in combination with metformin. Metformin is available as an inexpensive generic with lots of researched history about its effects.  Eventually I got the prescription and have been on a tiny dose. It has made a major difference for me in stabilizing my weight, and in providing some of the energy I lost with chemopause. I don't even take the full standard dose. I take just 250 mg with each meal for 2 meals a day, which limits the diarrhea one can have with metformin.

My guess is that it is at LEAST as helpful as chemotherapies if not more so for those who gain weight due to menopause.

I do think that to prevent recurrence one pretty much has to put oneself in a menopausal status, either by nontoxic ovarian ablation or by chemopause. I think THAT is the key difference in any benefit in reduction of recurrence when comparing those who do chemotherapies and those who don't. Chemopause reduces recurrence, and so does nontoxic ovarian ablation.

What I am saying is that I think the comparison of trastuzumab alone vs trastuzumab with chemo would require ovarian ablation for those doing trastuzumab alone, to get a low recurrence rate.  And my guess is that because trastuzumab can boost the immune system response, it plus ovarian ablation would have a much lower recurrence rate than chemotherapy and trastuzumab.

I'm hoping metformin also favors a lower recurrence rate.

A.A.