Back home again

I got home Thursday night. I don't have to go back out there until the last week in January. We are going to try to get all of my labs and one CT scan done from here before then. There is a question about how accurate the lab here is in testing the drug levels in my blood and my CMV levels so we are going to have both labs do them for a couple of weeks and see if they are the same.
I am feeling much better. I am done with the antibiotics and should be off the antiviral in the a couple of days. I met with the Rehabilitation doc and physical therapist at NIH. It turns out that the muscle weakness that I am having is actually in my hips - especially the left side. I guess the Prednisone can really affect your shoulders and hips. The gave me some exercises to do and some energy conservation tips. One of the recommendations is to lay down for an hour each day to rest (Margaret - is my bed ready? I think it will fit in my office) The transplant team is excited that I'm going back to work on Monday. They think the sooner the better even though I will probably get some kind of crud at work. Flu season doesn't peak until Feb or March, so maybe I will be ok for awhile. It's kind of frustrating that I can't have any immunizations. The live vaccines would be harmful and the other vaccines would be ineffective.
It looks like I will probably start some chemo when I go back in January. I should be off the steroids or close by then. They have used some specific chemos on transplant patients that have had the result of jump starting the immune system to fight the tumor.The chemo itself can also be good. Since I have been on the steroids I am not getting a very good response. The other option is to have some Donor Lymphocyte infusions (these were taken with my brother's original donation). The risk is that it could cause GVHD (the skin and gut stuff that I have finally recovered from). We will make a decision after my next CT scan in early January. I better enjoy the little hair that I have while I can.

Testing at NIH

I had a full day of testing on Monday. Early this morning they called to tell me that my doctor would be out sick and I could have the day off. I will be seeing the doctor tomorrow after my bone marrow biopsy (looking forward to that). I was able to talk to the infectious disease doc on Monday. He looked at my CT scan and said that based on how the pneumonia is healing it was bacterial. That is good news because the antibiotics are working and we don't want a viral pneumonia. I am feeling a lot better due to the antibiotics and my CMV level has also dropped enough for my drug dosage to be cut in half.
The trip out here was exhausting. Dulles is a huge airport. By the time I made it to the baggage claim (I took a couple of breaks) everyone was gone and just my suitcase was on the turnstyle. Somedays I feel like an old lady.

Lounging at home

I have been spending the week at home napping and watching TV. I feel pretty good as long as I am sitting still. I get really tired when I go out or do a lot of walking. I'm still trying to recover from all the muscle weakness in my legs caused by the steroids. I am not having any symptoms from the pneumonia so that is probably getting better. It sounds like they caught it early.
I am going back to Bethesda on Sunday. I am flying out alone and renting a car. I really hope I have more energy by then. I should be back on Thursday. I am planning on going back to work on Monday the 17th. Now that I have a return date, I can think of a million things I need to do there. I am going to try to work only part time for at least a couple of weeks.

Home from the hospital

I made it home from the hospital tonight. I have a mild case of pneumonia. They are not sure if the pneumonia is CMV related or if it is bacterial, so they are treating both possibilities. I haven't had a fever since Saturday. I would much rather be hospitalized in Maryland than here. The doctors are more knowledgeable and the living conditions are much nicer. I was finally able to convince the docs here to call and talk to my docs at NIH.
I missed my flight back to Bethesda on Sunday. They have rescheduled all of my appointments for next week, so I will be flying back on Sunday.

Going back to the hospital

I'm on my way back to the hospital to be admitted. My fever is 103 again and my CMV level just came back elevated. I'm not sure if Regions has any internet access, but I wil update when I can.

Home

I just got home from the hospital. I had a fever of 103 yesterday and after spending hours in the ER they decided to admit me. Nothing has shown up on the tests that they have done yet. I am still having fevers, but I they finally decided that keeping me in the hospital was only exposing me to more chances of infection.

Finally home!!

We made it home early this morning. The drive was not too bad. I was at the hospital Tuesday until noon and needed to be back here today for an 11am appointment with my doctor, so we drove straight through. I also had to meet with the home infusion nurse for 3 hours this afternoon! Now I need a nap.

Here is the link for my caringbridge site:

www.caringbridge.org/visit/jilltollefson

My plan is to keep that site going while I am taking time off from work. There are lots of inquiring minds there.

Good news - no brain mets

I had the brain MRI this morning. My cancer has not reached my brain!! This is very good news. I also talked to the study doc for about an hour today. I am even more convinced that this trial looks promising. There could be horrible side effects or complications, but I think it's worth a shot. Sometimes I have to remind myself that I am dying.

I am starting a caringbridge site for family/work friends to follow while I'm out there. I will post a link when it's ready. I'm not sure if I will keep both going while I'm out there.

anticipation

I haven't written in awhile because I have busy trying to finish things up at work and home. I have most of the legal documents done, I just need to finish setting up my trust. The more I learn about this trial, the more I wonder if I will really make it to transplant. I will be going in this week for a brain mri. If I have brain mets then I'm out. I hope that doesn't happen because then I'm back at square 1. I am scheduled for appointments in Maryland from July 10th - 17th. If all of those go well then I can sign on to the trial.

My cover has now been blown at work. Everyone knows that I have cancer. So much for privacy. There is no way to plan for such a long leave without the word getting out. Of course the word does get a little distorted. One woman approached me yesterday and to tell me how sorry she was that my cancer was persisting. Then she said " so it sounds like you are going to take time off to travel before the end" . I hadn't thought of doing that yet.

still trying to plan

I am trying plan for this transplant, but everytime I talk to them the details seem to change. There are so may variables that may alter the dates or length of treatment. It may not be an option to stay at my friends house after the transplant, so I am looking in hotels etc. It's so expensive out there (even with the patient discounts) . It looks like I need to come up with an extra $20,000 to make it through this. I know that when you look at the big picture that isn't a lot of money. I am fortunate that the initial medical costs are covered, but when you are already tapped it's difficult imagine where that money could come from.

Contact your Senator regarding the GINA act

The Genetic Information Nondiscrimination Act, or GINA, (S.358) is on the verge of passing after 12 long years! The House bill (H.R.493) passed 420-3 on April 25 and the Senate bill has been reported out of committee. We just need the full Senate to vote on the bill to get it to the President’s desk! Tell your senators to push for GINA to come to the floor for a vote! .
You can e-mail this to your senator by looking up their e-mail address on their website by following this link:

http://www.senate.gov/general/contact_information/senators_cfm.cfm

(once you go to their website, click on the contact option on the menu).



Sample Letter (feel free to personalize this)

Dear Senator ____,

I am am sending this letter in support of the Genetic Information Nondiscrimination Act, or GINA, (S.358). I am urging your support for this legislation to come to the floor and pass. All people carry high risk for some disease. This bill will help protect you, your relatives, your friends, and all Americans from health and employment discrimination based on a genetic test result or predisposition to disease.

It is astounding that this bill, which the Senate has passed unanimously in the past two years, has not yet passed in the 110th congress. The House passed this important bill by a vote of 420-3 on April 25, 2007. More than 140 national patient groups, professional societies, academic institutions, research centers, companies, women’s organizations, labor organizations, and the millions of Americans endorse this legislation. The President has given his endorsement of this legislation. Those who support this bill represent every sector of society in this nation, and we urge passage of GINA.

This bill protects all Americans from the misuse of genetic information in employment and health insurance decisions. With these protections in place, Americans will be able to use genetics in medicine without fear of misuse of their genetic information.

Thank you for your time.

making plans

It sounds like I could go out there on July 9th for a week of prescreening and if that goes well I would do 4 days of chemo. I could then come back for two weeks and return either for the start of the transplant or one more cycle of chemo. It all depends on how the chemo works. Now they are telling me that when I come out for the outpatient chemo I will need to have someone with me 24 hours a day. I have never needed anyone to accompany me to chemo. I'm not sure how I will work that out. I was having a hard enough time trying to find people to be there after the transplant. Of course there is the expense of flying people out as well.

I told several people at work today including my supervisor. They are all fine with me leaving. We are so busy at work I hate to dump all my work on them. I haven't told my staff that I will be taking 4 months off. Everyone is so stressed out these days that I'm not sure how to tell them about this.

Good news...I think

i got a call yesterday and was told that my brother is a 6/6 match. I can go ahead with the stem cell trial if I want. Initially I was terrified (well I still am a bit). I emailed my doc and he thinks this is great news. he thinks this trial should be my first choice. I talked to my brother and he is ready. He actually sounds excited. I also talked to a friend that lives in Maryland and the offer is still open for me to stay with her. Maybe this is all working out for a reason.

Here is the info on the study:

http://clinicalstudies.info.nih.gov/cgi/wais/bold032001.pl?A_04-C-0131.html@stem@cell

only the lonely

Linda wrote into Leroy's blog today and said,
"... makes me think of what a lonely experience cancer can be. We get all of the input about decisions like this, but in the end the decision is ours alone. ..... "

I'm starting to realize how many of us are out there. We had cancer...we have cancer.....even if you think that you are cured you are always wondering if it may return. I was "cured" twice, but that did not last for long. If you take a close look at my records it had most likely metastasized by the time I was originally diagnosed. I try to find a connection with others that are in similar situations, but every new story that I hear sounds worse than mine. I look for hope when I hear that others are NED or even 10 year survivors after stage IV. We can't predict how our cancers will respond to treatments or what new advances may come up. Most often the responsibility is put on us to pick the treatment or to decide to give up on treatments. I find myself avoiding my friends (some don't even know my cancer is back) so we don't have to talk about this. No one has the answers but we are expected to make the decisions. In the end I know that I'm on my own. This is the loneliest that I have ever felt.

still waiting

I guess I should be enjoying the fact that I feel physically fine. It's difficult when you have been told that by august (less than 2 months away) I should be feeling really crappy...possibly unable to work. I know my cancer is growing. I think it's unlikely that since I have been off chemo for a month that it has stopped or slowed down. I'm spending my time trying to find a trial that I may qualify for or read the research out there to try to predict which trial I would have the best chance with.

This morning I had to listen to my roommate whine. He wants to know what's going to happen to him, where will he live , how does all this impact him. I guess those are valid concerns for him. To be honest I don't really care. I am not his mother, he is an adult and he will be alive. I could not even find a response for him.

options

Today I will have my blood drawn to be tested for a possible stem cell transplant trial. My brother sent his in yesterday and we need to be a 6/6 match to be eligible. Our chances of matching are about 25%. I know that this is probably my best option for treatment, but the risks, side effects, potential complications scare me. The worst thing is that the procedure would most likely result in me going on long term disability (never to return?) from work. I'm not sure if I'm ready for that, it's almost like admitting that I'm dying. I need some more time for denial :)

What is up with the Mayo Clinic?

I called the Mayo Clinic since there is one close to me. They had their doc review my info and they told me that there was no standard treatment that they could recommend but they would refer me to their phase I office. Today(almost three weeks later) I received a call and they would like me to come down next week for an appointment. They will not give me any information on what trials they might have. She said that I need to be "fully screened" and this would require anything from a 4 hour to a three day appointment - and I will not know until I get started. She said that I would need to hand carry all my records, scans and a tumor block and that they would need to retest my blood and do another scan even though I just had these done. She also told me that it is possible that my insurance may not cover them if I just had them done and they would expect me to pay. If this wasn't the Mayo Clinic I would think this was a scam.

The good news is that the hospital decided to release a tumor block to NCI , so they can test me for the gene therapy trial. THis took more than one week of aggravation. Give me my damn tumor!!

One step closer to a trial

I made the first cut for one of the trials. This is a good thing since time seems to be ticking by quickly. My blood passed the test and now they need a tumor block to see if my cancer overexpresses P53. They actually divide your tumors up into blocks and keep them forever. Luckily the nurse at my clinic is helping me gather all this stuff. It not as easy as you would think to get your records and your own tumor. It sounds like we need to fax some paperwork back forth today before the lab with release the tumor block. Once the tumor arrives in Bethesda it will take about 2 weeks to test it. I'm still working o some other trial oprions as a back up or if this wone does not give me a positive response.

My darling daughter graduated last night!!! There is another graduation ceremony today at her other school today. I thought I would have been long done with cancer by the time this day came. So much for strating my new life now that she is an adult.

Waiting for.........?

I guess I'm waiting to be matched with a trial to find some wonder cure for my cancer. I have heard back from Mayo and the U and they will not see me for a consult or second opinion. They both think I have exhausted all treatments and that my only hope is a phase I trial. I don't fully agree with that, but who would want to take on a new patient with such a grim prognosis.

There are 4 trials in Bethesda that I am trying to get into. I'm waiting for two more tubes to fill with blood and my clinic needs to send records and tumor blocks out there to be evaluated. My doc says that I shouldn't wait for more than 3 or 4 weeks before starting a treatment. I hope something turns up before then.

what they don't talk to you about....

I am surprised at the things that my doctor (or anyone in my clinic) have never discussed with me in the more than two years that I have been doing this Cancer thing. I have seen two different postings on the wall for support groups (one for newly diagnossed and one for metastatic) but no one has ever recommended then to me, asked if I had a support group or wanted to get hooked up with one. They like to ask the question " coping" ? yes, it's a one work question to which I always give a one word answer "good or fine" . The nurses type in the computer after they ask. Recently the docs new nurse asked the question and when I replied "fine" said "that's an improvement over last time" . I didn't even ask what that meant. When I asked directly how the disease would progress if we didn't find something thaht worked, the doc said in 6 months (aug 07) you will be feeling really bad and by the end of the year you will be dead. Interesting....they have never mentioned hospice, end of life planning - directives, wills etc...... I wonder when I will hear about that??

So much for doctors......

I saw the doc today. I already had my scan results, so I knew more Carboplatin was not an option. He says I need to find a trial. I guess the search is up to me and he will be available for consult. I have already started this based on our earlier emails. I showed him some of the other trial sthat I have looked at....I'm not sure how to read his response. It may be that since these are not standard treatments he doesn't know what to recommend or it may be that he doesn't think I will ever find anything that works and the trial stuff is too humor or distract me. I guess we may find out the answer some day.

More bad news

emails from the doc:

Hi Jill,
The scan could have been better. It is available in My Chart for you to see, but it showed some growth in the lung nodules. Nothing new was popping up anyway. I haven't heard of the specific trial you are talking about, but there are likely a number of phase I trials at various locations. These are new drugs being tested, with little data so far regarding safety and effectiveness. They are always administered at a university setting (or at the NCI in Bethesda). The idea of a trial is probably a good one, as the standard drugs have failed to work well. I'll see what I can find out about the NCI trial, but I think there may be other standard options to think about (as they are more likely to work, honestly). I will see you when you come in.
Dan

They do have a trial that may be interesting, but you need to have a sibling who is HLA matched to donate blood cells. If you are interested, I believe the NIH requires you to be the point of contact rather than the physician, so call and see what they say about the trial...
Let me know. Here's the trial info:
Phase I Trial of T Cell Exchange With Th2/Tc2 Cells for Allogenic Stem
Cell Transplantation After Reduced Intensity Conditioning for Metastatic
Breast Cancer NCI-04-C-0131

So much for the easy chemo

I haven't heard the results of my scan so I email the doc today. He said "the lung lesions are growing in size, but there are no new spots anywhere. This isn't the result either of us were hoping for. We'll discuss when you come in tommorow (with questions).

??

Is is better to know that you will be dieing soon or is it better to live without knowing that the end is near?

no side effects

Did I really have chemo last week? I have had absolutely no side effects. I hope this stuff works because I can handle this.

starting chemo again!!

I saw the doctor today as started my new chemo. I'm going to do 2 rounds of CMF and then recheck the spots with a scan and see where my tumor markers are at. They are retesting my tumor markers today in case they went up since Jan 11th.

CMF is suppose to be an easy chemo. They call it "chemo -lite". I'm not sure if my hair will fall out. I would prefer any other side effect.

Facts about Lung Mets

If the cancer has traveled past the lymph nodes to another part of the body, a woman is said to have “distant metastasis”. The most common places that breast cancer spreads to are the bones, the liver, and the lungs. Many treatments are available for breast cancer that has spread to other parts of the body, but unfortunately once cancer has escaped from the breast and under arm lymph nodes, it is no longer curable. The goal of treatment in this case is to prevent the cancer from spreading further while at the same time minimizing side effects from the treatment.

Once breast cancer has spread beyond the breast and under arm lymph nodes, it is considered a “systemic” disease, meaning that it is necessary to treat the whole body rather than just one particular spot. This is because, once the cancer has traveled through the blood stream or lymphatic system, there are likely to be breast cancer cells in many different parts of the body, even if scans only show a few spots. For this reason, treatments that reach all parts of the body, such as chemotherapy and hormonal therapy, are used to treat metastatic breast cancer instead of treatments that just treat one part of the body, such as surgery. In general, surgery is not a part of the treatment of metastatic disease because treating only one area allows cancer to grow in other places. It is unfortunately not possible to remove all of the parts of the body where the cancer has spread because it is impossible to measure the individual cancer cells that will grow into a tumor without chemotherapy or hormonal treatment.
Breast cancer often responds to many different kinds of treatments, and most patients can live for months to several years with metastatic breast cancer.
Women with tumors that are not responsive to hormonal therapies or who have a large amount of disease in their bodies are usually treated with chemotherapy. There are many different types of chemotherapy that are used for breast cancer. In general, it is important to remember that the goal of treatment is to stop the cancer from growing while still allowing the patient to live a normal life. Many times the chemotherapy that is chosen in this setting is less toxic than the chemotherapy given after breast cancer surgery.
In recent years, there has been much interest in developing new types of medicines that kill breast cancer cells in new and different ways. Some of these medicines, such as trastuzumab (Herceptin), are designed to work against a specific type of breast cancer. Others, such as becizamab (Avastin), may work well in combination with chemotherapy to increase the likelihood that a treatment will stop the tumor from growing for a longer period of time.
In general, most women with metastatic breast cancer will be treated with several different types of therapy over the course of their disease. Over time, cancer cells become resistant to a treatment, and will begin to grow. When this happens, a change in treatment is needed. Unlike many other types of cancer, breast cancer cells can be controlled by many different types of chemotherapy, and women with metastatic breast cancer are living longer and longer.

The results are in....

I read the biopsy results on- line today. No surprises. The nodule that they biopsied is "POSITIVE FOR MALIGNANCY" (yes, the report had that in caps) Metastatic carcinoma consistent with ductal carcinoma primary.

President's Day biopsy

I had my lung biopsy today. We know the results will not be good, so this was kind of a formality. I was hoping to get this done quickly and enjoy my day off (one perk of working for the government), but it took all day! The actual procedure was fine. I had to wait more than one hour from the time we were told to arrive and I had to stay 4 hours after the brief procedure to make sure my lung did not collapse. The results should be back tomorrow. I couldn't get an appointment with my doctor until 2/28 so I will start chemo then.

"I'm concerned about you"

I saw the doc today. I was sitting in the exam room waiting....the door flys open and he says "how are you" . I reply "fine" He says " I am concerned about you, your tumor markers are up" I reply " and my scan results didn't look good either" He was suprised that I had seen my scans. He admits that he had only seen them this morning! Earth to HealthPartners...get a clue....if cancer doesn't kill me you will. My tumor markers were up (for the first time ever) at my last chemo on 1/11 and no one mentioned it!

He says we should start chemo soon. I don't need a biopsy, but it's my option. I opt for the biopsy but I can't get in until 2/19. He thinks I should do CMF. I will have to do my own research and get back to him. Do you ever feel like you kow more than your doctors.

was that a routine scan?

I went over to St. Paul today to pick up the disk with my scans on for my appointment with the surgeon next week. Tonight when I got home I put the disk in the computer. It's fun to go through all the slices of your body. After spending sometime going through the films, I looked at the reports - not good.

The report says "multiple bilateral pulmonary nodules new from both prior PET CT and prior CT scan of 2005 compatable with metastases" What! I thought this was a routine scan. Why hasn't anyone called me.

The report says collected 1/30 at 11:13am resulted 1/30 at 2:21 pm. Today is 2/9. Was someone going to tell me? I see the doc on 2/13 (routine follow - up) I wonder if I should call or email him before then.

The big squeeze

I went in for a "regular" mammogram. I always thought people who complained about painful mammograms were wimps. Today I was a wimp. She flattened that thing so much I almost said "owie". Victory - as this was the first mammogram that I did not have to "stay after". That means the film looked ok. The actual report should be back in a day or two.

Bloody CT scan

I went in for a CT scan today. I still can't believe how much they charge for these. It sounds like I will have a scan every 6 months for awhile just to make sure nothing is in me growing.

As I was leaving the building after my scan today I looked down at my hand and blood was all over it. I took off my coat and the entire arm of my black sweater was soaked in blood. I had to go back in to get the "leak" taped up. The nurse said "sorry about your sweater" .

Last Chemo!

I know that I said it once before, but I just had my last chemo!!!

Now I can start scheduling my surgeries....fun fun....

I am going to have a scan and see the doc in about a month.