Discouraged

Soconcerned

I'm writing about my Mom and looking for similar experiences because I need to hear a positive outcome.

My Mom was diagnosed IDC,  ER+ PR+ HER-, 3 tumors same breast and quadrant (1) 1", (2) 1/2". Node biopsy positive. Stage 3.

Mom went to cancer research hospital. Clean chest, ab, and pelvic CT, clean bone scan(they said her bone scan showed arthritis all over her body, even her ribs! I hope they are sure it is arthritis) at diagnosis in Feb. Surgeon wanted Neoadjuvant Chemo then mastectomy, more chemo, radiation, horomone therapy... her surgeon kept refering to her treatment as "the kitchen sink" I think Cytoxan and something else that required a baseline heartscan. Surgeon said she would futher stage after surgery.

Mom completed 6 of 8 Neoadjuvant chemos. Supposed to be every other week. Mom was so sick most were 3 and 4 weeks apart. Dehydration, No white blood cells, anemia, low bp, low oxygen saturation, fainting, mouth sores, crazy nauseated. Young Oncologist says he's never seen anyone have such a hard time with so many complications but doesn't back off the dosage. And a week after 6th treatment she gets pnuemonia, then sepsis, then kidney faliure, respitory failure. Did I mention my Mom is 55 with no major medical problems before BC. She amazingly pulls through. Been a month in the hospital just got out. They stopped chemo just trying to get her well enough to see if she can have surgery which may take awhile. Shes using a wheelchair or walker to move through the house but she doesnt move a lot mostly in bed.

So here is my questions if we wait a few months after she has discontinued treatment for her to "get better" so she can have surgery, what happens to the cancer? Because I am about to freak out! I feel like we are missing our window of opprotunity for a cure. Has this happened to anyone else?

Claire_in_Seattle

First of all, I am so sorry about your mother.  The real worry is anything that has spread beyond breast tissue, which is one of the reasons for immediate chemo.  It will most likely make no difference if she waits a few weeks to get her strength back prior to surgery.

I also had AC (adriamycin + cytoxan) chemo and they did a heart scan on me.  I was fine, but if your mother doesn't have great heart function, they may go with a different combo.  That is why they do the scan.

She absolutely has to recover prior to surgery.  I can't imagine what she has been going through.  Did they give her Neulasta to prevent infection?  I would certainly want to go that route if more chemo.  Also blood transfusions (or red cell building meds).

Dehydration is no joke and a major problem.  I was fine, as was thirsty all the time, so drank water by the gallon.  Sounds though, that your mother couldn't keep things down.

I think the questions you need to ask going forward are options, and what they plan to do to minimize the symptoms she has experienced so far.  You need to have a good answer.

Being ER+, she will most likely need hormonal therapy.  With arthritis, AIs may be difficult.  But first things first.....get her through the remainder of active treatment just fine.  She needs some rest, and she will need more support with further chemo.  That is where you need to focus.

Good luck.

Pure

Well ,hopefully the chemo got the cancer. Is she er positive? If so she could possibly start on her hormonial while waiting for surgery.Also, I would highly suggest a 2nd opioun from a different place.

My doctor told me that the surgery cut my chance of the chemo coming back by 30%....Then you put the treatments on top of that tocut it down. She alread got the most important tx-the chemo.

pupfoster1

I'm so sorry you and your family are going through all this, but you found a great resource for yourself, and your Mom is she wants to vent, cry, laugh all of the above!

Did the docs get a look at the tumors yet after chemo to see if they've shrunk (btw I had multicentric disease as well)? Every "body" reacts differently to the chemo and I am so sorry your Mom had such a tough time with it.  I had many side effects but was lucky to stay out of the hospital.  I actually found the surgery the "easy" part of it so far.  So yes, she needs to get her strength up for the surgery and I doubt the short window would sway the outcome against her.  And although there is no "cure" for cancer (YET), the longer we are out from diagnosis, the odds go higher in our favor.

Take care,

Sharon

AnacortesGirl

While she is healing it would be a good time to go and get another opinion from a different oncologist.  There are so many options for handling nausea and low blood counts.  What did they try?  I had a lot of issues with my reds and ended up with 7 transfusions but they did the trick.  I also took daily neupogen shots to keep the white cells up (neulasta is the other option).  Were they tracking the metabolic panels for liver and kidney functions when they did the blood tests before chemo?

Unfortunately we are all different and some cannot handle the standard chemo regimens.  But there are different chemo drugs and different ways of administering them.  For instance my AC was done as a weekly Adriamycin infusion and a daily Cytoxan pill.  Nausea was handled with Zofran and reglan - no real issues.  Fatigue just meant I was in bed at 6-7 every night and slept till my normal get up time of 5:30.

I was 51 when I went through my chemo and in good health.  I feel that I'm about 75% of where I was last year before starting treatment but I'm just finishing radiation and am still on a low dose chemo.  It won't be long before I'm 100%.  I believe it's reasonable that your mother, who started with good health, should be able to get through this tx without all these major health issues.  Is the doc so focused on eradicating the cancer that he's forgetting about the human patient?

It doesn't feel comfortable knowing that the cancer is still inside her but she has to be back to a healthy state to get through the surgery.  Sharon has a good question -- have they been tracking the effects of the chemo on the tumor with scans (MRIs or maybe UltraSound)?  If not, then I'd definitely be looking for another onc.  It was almost 6 weeks after my last chemo before I did surgery and there was no changes in that time.  Even with my grade 3 cancer it wasn't spreading that fast.

Soconcerned

Thanks for all of your posts. My Moms Oncologist is young and just finished his fellowship. My Mom was also not working and without insurance when diagnosed. She is on state Medicade. They have not done any PET scans. The only scans were when she was diagnosed and they have not done any to see what effects the the chemo have had on the tumors. I'm not sure why that is, maybe it's because of her insurance. My mom was getting weekly shots, at one point daily of some kind of drug that was supposed to go into the bone marrow to boost blood cell production, not sure of the name. They did do weekly blood draws to check blood counts. My mom was hospitalized through some of her treatment and put in isolation and on oxygen because of extreme low blood counts. Actually she was even on oxygen at home because of such low red counts. And they did do transfusions, plasma, platlets once she was admittited with the sepsis, pnuemonia after she hemmorraged while putting in a central line in the ICU.

I'm not real happy with her Oncologist. My sister called his office because my mom was really sick. My mom said she was too weak to stand and had bad hand and foot pain. His nurse called back and said she talked to the DR and it was normal chemo complaints and it would pass. My sister took her to the ER where she had to be lifeflighted to a larger hospital. At that point her bp was 50/30 oxygen sat 70 with maxed output on oxygen mask. Thats when she had the pnenmonia and sepsis. When I flew in immediatley from out of state. The ICU docs didn't know if she was going to survive. But again she did. I feel her chemo has not been managed well but I think I'm just a little bitter wanting someone to blame. And I choose to blame hime because several times this oncologist has said to my family "ive never seen..." And I'm thinking then call your friends with grey hair and see is they have "seen" because your missing something. I think it has been too toxic for her can't they adjust dosages?

AnacortesGirl

I wouldn't consider too weak to stand and bad hand/foot pain normal complaints.  I had the bad hand/foot pain and had to take vicodin throughout the day for almost a week.  My onc decided it was time for a break in tx because it was affecting my quality of life.  Amazingly, it cleared up in a week and never came back as severe.

My thought is to not waste the energy blaming the onc.  Some women just don't handle chemo very well due to their biology.  But it does seem that it would be worthwhile spending that energy on finding a different onc to get a second opinion.  It may not bring any new information into the equation.  But the relationship between a cancer patient and an onc is a long term commitment.  Even after the initial tx there are years of visit back to the onc.  You want to have a doc that your mother feels she can talk to, will listen to her and will respond with her best interests in mind. 

If you can get an appointment set up with a new onc then be sure and ask for copies of all her scans, lab work and doctor notes.  Ideally the scans should be both the notes and the electronic copy of the actual scan.  Hand deliver them to the appointment.  It will ensure that the new doc has them for review. 

You mention shots for her blood levels.  There are two types.  Neupogen and Neulasta stimulate the white blood cell production.  Procrit and Epogen are used to stimulate red blood cells.  However there are studies that indicate the use of Epogen or Procrit may stimulate cancer growth.  My onc will use them in limited use but not as a regular supportive drug.

Is your mom on an anti-depressant?  If she is able to handle it, after all the other issues, it might make a real difference for her going forward.