Information Overload-The What Ifs with Possible Side Effects

Yesterday, Mom, Dad and I had a meeting with Cindy Williams, Dr. Bagai's head oncology nurse. We met with Cindy for over 2 hours at a place that will has become very familiar to us, the Fairview Hospital Moll Center. This was an informational meeting which included a video, discussion on side effects and then a tour of the chemotherapy room. We were given lots of information about chemotherapy side effects in general and then the possible side effects of the two drugs that mom will be taken. As Cindy told us, she was the one that gives the scary news about all of the side effects. Cindy's mantra was "Call her". There are many factors that are immediate calls and other ones are just calling for advice. The immediate calls would be a 100.5 fever (or neutropenic fever), severe headaches (Mom already gets headaches, so she will be able to tell the difference for different types of headaches), severe mouth sores, severe nausea and or diarrhea.

There could also be side effects with her blood counts (red cells, platelets and white cells). Her blood counts will be on a "roller coaster ride" from the start of her treatment. She will start with regular counts, then they will head "downhill" over a 7-10 day period and then they will go back "uphill" after that period. Then, she will have another treatment and this will happen all over again. We'll have to look for any possible very low counts that could be a problem. These super low counts would be another reason to call Cindy.

Mom will be getting a steroid when she gets her Taxotere. This could be an issue, because steroids cause blood sugar to jump sky high. Mom is diabetic and has had her insulin pretty much under control. Cindy was concerned about the dose of the steroid. It might be reduced and Mom could also be given some insulin during her treatment if her sugar level jumps sky high. But, the steroid is needed because of a possible allergic reaction to the Taxotere.

We asked Cindy about Mom continuing with her all of her other medication (and there is plenty) and Cindy said to stay with them, there shouldn't be a problem with that. Mom will be meeting with Dr. Bagai before each of the treatments (he already met with her for the treatment next week) for any side effects or changes in her system.

Of course the main two side effects will be nausea and hair loss. Mom will be given a prescription for nausea medicine. She will also be given a nausea medicine with her chemotherapy mix, so that will be in her system for at least a few days. The hair loss is of course a hard thing. Each drug will vary on the amount of hair loss. It all depends on the patient. Barra was so sweet to give mom a bag full of head scarves. Mom is opting not to wear a wig. She and her friends are already taking bets what color her hair will come back as. Humor wins the day!

We are lucky. This is a short treatment schedule. It will seem like a lifetime during it for Mom and us, but is will only be a total of a 12 week treatment cycle. Cindy also reminded us that this is preventative. This is to make sure that any microscopic cancer cells that are in her body are destroyed, so we do not have to go through this all again. I DON'T want that to happen and I know that my Mom doesn't want that to happen either.

My brain is on information overload!

Treatment-Bring It On!

Today, Mom had two doctor's appointments: the surgeon, Dr. Pratt and her soon to be oncologist, Dr Bagai. The visit to see Dr. Pratt was to see how she is recovering from her surgery, which was 4 weeks ago yesterday. She is healing really well, I think better than they thought that she would be. Mom's range of motion is very good, which means that she is doing her exercises. The healing well is good news! Dr. Pratt also walked us through the Octotype DX test results. The results showed that Mom's tumor showed a higher risk of recurrance. Out of a range of 1-100, Mom's result was a 42. This is considered a high risk of cancer coming back in the next 10 years (even with being on a hormone treatment). Mom's risk would be 30% that the cancer could return in any part of her body. The test also checks to see if chemotherapy is a viable solution. In Mom's case it would decrease her recurrance rate to 6-10%. Dr. Pratt released mom from her care and only wants to see her as a follow up in 6 months.

The next appointment was with Dr. Bagai, mom's oncologist. This was a consultation and decision making meeting. Dr. Bagai asked mom many questions about her health, how the tumor was found and how she was feeling. Then he walked through the oncotype DX test results. He basically said the same thing that Dr. Pratt said. But, he said that he was more concerned because the test also showed that mom's tumor, although small (1.5 cm) was considered agressive. She is also Estrogen receptor positive, Progesterone negative and her she is negative for a protein called HER2. All of these are factors in what treatment she is going to have. Dr. Bagai wants to be agressive with Mom's treatment. He walked through 2 options. The first option was with a mixture of 3 drugs in a 20 week treatment. This treatment would contain Adriamycin, Cytoxan and Taxol. The doctor told us of the risks with this and his worry because of mom's other health concerns-high blood pressure, diabetes, and a heart stint. The second option was a 2 drug mixture in a 12 week treatment. This treatment would contain Cytoxan and taxotere. Mom opted for this treatment. Once this was decided, the next steps moved forward very quickly. The doctor did a quick exam of the surgery site and then every started in motion. he wanted to start the treatment next week. The nurse, Cindy, told us the next steps. We are meeting with Cindy on Thursday afternoon to do a walk through of everything that she would be going through with her treatment (just like we did with Paula before the mastectomy). Mom starts her chemotherapy Thursday, March 4th at 9:00with blood tests and then the start up of therapy.

Our new world, for the next 4 months will consist of white blood counts, red blood counts and side effects. Let's get through this and get going with making sure that cancer is out of Mom's body and not coming back!

Family Week

Nearly a week ago, I posted about my Aunt Marilyn's doctor giving grim news about her prognosis. Well, Aunt Marilyn beat the odds and she should be settling into a rehabilitation facility as I write this. I stopped by to see her in the hospital yesterday and she was getting ready to be transported to the rehabilitation facility in the early evening. I hope that she was able to get transported and was able to settle into her new room. This is the third year in a row where she has had "her vacation" in the hospital and the rehab center. She bounces back and then goes on to her regular routine again. When she is ready, she will be going to her new home in the Normandy apartments. While it isn't exactly an assisted living apartment, it is a place where she and my uncle can get meals, have someone clean the apartment, go to social activities and have someone keep an eye out for them. My cousins, sister and I moved them in this week. It's a very nice apartment, just slightly smaller than their current condo. I think that Aunt Marilyn will like it there. Uncle Chuck has adapted to being there, but I don't think that he thinks that this is a permanent move for them. Time will tell, but at least they are at a place where they can get the extra help that they need.

We are counting down the days until the oncologist appointment on Tuesday. Okay, we really aren't counting down the days; it isn't something that we wanted to have to do. We just want to know what the course of treatment will be. Mom went to her primary physician earlier this week. She is adjusting her blood pressure medication because her sodium was so low during her surgery. She spoke with her doctor and he will be a part of her future treatment process. He will be working with the oncologist to give her the best possible medication treatment. I think that this helped calm my mom's nerves a bit. It is going to be a process that we will all be going through together.

Mom and I are meeting my friend, Barra, for lunch tomorrow. Mom can ask Barra questions about her treatment, her chemotherapy and how she felt through all of this. I am so thankful that Barra is there for me to ask questions about what my mom will be going through.

The picture above was taken at Christmas with my mom, her brother Bill and sister Marilyn.

Test Results

Mom got the preliminary test results from the Octotype DX test late last week from Dr.Pratt. She has a recurrence score of 45, which is at a high risk for breast cancer to return (either in her other breast or in other parts of her body). The course of preventative treatment would be chemotherapy and then hormone treatment after that. We consult with the oncologist on February 23rd after a follow up visit with Dr. Pratt.

Of course, this wasn't the news that we wanted to hear. In the perfect world, mom wouldn't need any other treatment. But, alas, we are not in a perfect world. Now comes the big challenge of getting Mom through chemotherapy treatments. Since treatment is different for each patient, we can't speculate on what type of chemotherapy she will be on. Also, we can't speculate on what the side effects will be. Everyone knows the typical side effects of hair loss and nausea. But, I know that these drugs affect patients differently. We will have to wait and see. Once, I know what her treatment course will be, I can do more research on the drugs and their side effects. So, as is a general theme throughout this blog, it is waiting....

I didn't want to forget to update on how my Aunt Marilyn is doing. She is doing remarkably well for someone that the doctor didn't think would survive the weekend. She will be going to a rehabilitation facility at some point this week for further recovery. She's very weak, but she's stubborn. I took mom to visit her on Friday afternoon. I think that Aunt Marilyn thrives with her family and friends around her. We had lots of laughs with my cousins who were there too. Mom was asking family members if they could tell that she has had a mastectomy based on wearing her new bra and fluff. Of course, everyone could see the difference, because things have to be adjusted professionally, but she still looks pretty good.

Mom goes to her primary doctor this week for a follow up on her sodium test and discussion on other prescription medications. I told mom to ask the doctor for a recommendation for an oncologist, just in case the one that she picked out wasn't one that she wants to work with. She also needs to get back in her regular routine a bit more. Yes, she still needs to recover from the surgery, but she needs to get out to drive and go to "The Gathering Place" and to her chiropractor. Sue and I are encouraging her to do this.

Recovery and Waiting....

Hospital Visit

I made another trip to the hospital yesterday.

This time it wasn't for my mom. It was for my mom's only surviving older sister, my Aunt Marilyn. Aunt Marilyn has a severe case of pneumonia as well as in the midst of congestive heart failure (which was diagnosed years ago). She was rushed to the hospital Tuesday. After getting settled in a room, she went downhill and was moved to ICU late Tuesday night. By noon on Wednesday, she was stabilized enough to be moved to a room again. I went to visit her yesterday afternoon as a representative of the family. We weren't sure if Mom should go to the hospital with all of the germs so soon after her surgery. But, she might make the trip to the hospital in the next few days.

Aunt Marilyn is a trooper (everyone in my mom's family are troopers!) and is very much a social person. She looked very small in her hospital bed, but we had lots of laughs talking about her cute paramedics, her great niece and nephew and Mom's surgery. This is the 3rd year in a row that this has happened to Aunt Marilyn. She gets pneumonia, recovers a bit in the hospital and then goes to a rehabilitation facility for more care and recovery and then she is back home. So, we joked about that too. She said, "Most people go to Las Vegas for the winter, I go to Rehab." I laughed so hard at that one.It's true and a very typical Aunt Marilyn comment! I don't know if she will pull through this time. The doctors don't seem to think so. But, don't count Marilyn out yet. She's stubborn and she's only used up her 8 out of her 9 lives.

Slow Progress

Mom got to the next level of her surgery recovery process today. It is 15 days after surgery and Mom got the surgery drainage tubes removed today. She's had issues with the drainage tubes since the week after surgery. She was creating alot of blood clots, which made 3 trips to the doctor's office to get the tube checked and cleaned out.

But, now that is out and Mom goes to the next step of the recovery. Dr. Pratt said that everything looks good in her recovery so far. That is good news. Mom can now shower (no more sponge baths given by Sue and I) and slowly get back to her normal routine. She can also start driving again-independence for her. She can go back to get her chiropractic therapy in a few weeks as well. Starting tomorrow, Mom will have a total of 8 exercises to do for post surgery recovery. She's been really good with doing the first 4 exercises (for when the drain was in), now she has to work in the next 4 into her day. These exercises have to be done 3 times a day and helps with the healing and flexibility.

The next step is finding out the treatment. Mom's next doctor's appointment is February 23rd. The test results will be back and the doctor will know if Mom will need chemotherapy, hormone treatment or nothing at all. Dr. Pratt believes that Mom will be on a hormone treatment for sure, but she doesn't want to speculate anymore until the results come back. After our meeting with Dr. Pratt, a meeting with an oncologist has been scheduled to go through the treatment possibilities. In the meanwhile, I've done research on hormone treatment-the types and the costs for mom's information as well as my own information.

Other things to look forward to in the next month-a first birthday celebration for her granddaughter, Brynn. :-) Brynn is a bit confused why her "Mama" isn't picking her up for kisses and cuddles. So, per Dr. Pratt's suggestion, I put Brynn on Mom's lap this past weekend. Brynn squirmed, of course, but Mom got some of the baby cuddles that she was lacking too! :-)

Minor complications

Mom has had some issues with her drainage tube and blood clotting in the tube, causing it not to drain. She was at the doctor's office last weekend, yesterday (Dad too her those times) and I took her today. She was scared, because the fluid in her tube today was very dark and it wasn't like that before. The nurse, Paula, told her to come in and luckily, Dr. Pratt was there as well. Dr. Pratt did a quick check and said that the fluid coming through the tube is old blood that needed a place to go. She said that during the surgery that was a bit of bleeding in the incision. That blood was sitting there for the past 10 days and needed to get out. She told my mom not to worry and that everything looked fine. She didn't see or feel another blood clot and mom wasn't in any type of pain. She thought that the drain would be removed early next week. Dr. Pratt gave my mom a big hug and that thankfully, helped to settle mom down.

This was the first time, since the original diagnosis in December that Mom was really scared. She couldn't concentrate this morning until she talked to the doctor's office. She didn't know if that dark fluid was a good or bad thing. I would have been scared too. It didn't look good. Thankfully, once Dr. Pratt and Paula explained everything, Mom calmed down.

Next step...getting the drain removed next week.

Mom wanted to go to an all afternoon "survival" seminar at "The Gathering Place" tomorrow. Unfortunately, she can't drive until the drain is out. Dad is working, I have a friend's baby shower to go to and Sue is with the kids. I was trying to encourage Mom to get a friend to drive her to the seminar and I would pick her up. As of this afternoon, she wasn't going to go, but now that she is feeling better about the drainage tube, she might change her mind for tomorrow. I hope that she goes.

Oncotype DX test

I have done a bit of research on the further testing that is going to be done on mom's tumor. The test is called the Oncotype DX test. This test is for early stage breast cancer, estrogen receptor positive (ER+) and lymph node negative patients. This test will let the doctors what type of treatment should come next for mom. This test also lets the doctors know how likely the cancer will return and if the patient would actually benefit from chemotherapy. The test results will give a recurrance score as well as a hormone (estrogen) receptor analysis score. This test costs $4,000 if she didn't have insurance! Thankfully, her insurance will cover the cost.

Now back to waiting....

More tests

Dr. Pratt finally called my mom this evening. She said that mom's tumor stage has been upgraded (or is it downgraded) to stage 1c. She is HER2/neu negative. There was not cancer found in the lymph nodes. They are sending out the samples for another test that seems to be required by Medicare. This test has to be sent out 2 weeks after the surgery and then it takes another 2 weeks to get the results back. This test will further dissect the samples and lead to the next step of Mom's treatment. At that point we will consult with the oncologist to decide what the treatment would be (hormone treatment, chemotherapy or radiation treatment or no treatment at all). So, once again we wait. Mom has been waiting for this call from the surgeon. I think that she feels better and actually believes the test results now.

Mom is getting sick of her drainage tube. I figured she would be. She can't shower, she can't drive and really get on with the recovery until the drain is out. She has to be down to 30cc of fluid in a 24 hour period before the drain can be removed. It could be by the end of the week or not until Monday. We should get more information from the doctor at that point.

So all in all good news, but still waiting for treatment options. Waiting is the key word here. And waiting not so patiently! :-P

Happy Dance

Finally!!

We got the pathology test results! We actually got them from Mom's primary physician, who we met with this afternoon. Mom needed to have blood taken to check on her sodium level. The pathology tests came back negative for cancer in the lymph nodes. That means that as of right now, the cancer has not spread. The surgeon, nurses and oncologists are meeting tomorrow morning to go over the cases and Mom's case will be discussed further. Treatment options will be discussed after that meeting when Mom gets her drainage tube removed.

I feel that I can now breathe a sigh of relief. Next is step talking about her further treatment options.

On to the next step!