Friday, November 27, 2009

Hope everyone had a great Thanksgiving!

Late Wednesday afternoon we saw the pulmonologist to go over Fred's CT chest scan. White there has been significant improvement in the scarring of the lungs from the pneumonia and will never be 100% clean the lungs are in good shape. Of major significance is that the lymph nodes in the chest remained the same size. This indicates that the leukemia has NOT started to return and is staying away for now.

Wednesday, November 25, 2009

Fred and I are back at Mayo Clinic for follow up testing and doctor appointments. Last night Fred did a sleep study at Mayo (so I was blessed with a wonderful night of sleep at the hotel). This morning we say the sleep disorder doctor, Fred has mild sleep apnea and they are putting him on a C-PAP with low oxygen for 6 weeks and we will come back to see if this has helped him with the tiredness. If this doesn't help we will take the next step...whatever that is. Fred just got done having a CT chest scan for his follow-up from his pneumonia. We are waiting now for his 2:30 pm appointment for some breathing tests before we see the pulmonologist at 4:30 pm. It is raining here so might as well spend it at the clinic all day.

Will keep you posted....HAPPY THANKSGIVING TO ALL OUR FAMILY AND FRIENDS!

October 11, 2009

It has been a while since I updated the post. Everything has been going well.

Fred has been having trouble with sleeping and always feeling exhausted. Fred and I went to Mayo the end of September for Fred to see a sleep disorder doctor which was recommended by Dr. Solberg. It was decided to do further testing so we will be heading up there right before Thanksgiving for him to have further testing done and also a recheck from his pneumonia that he had in April. He will do a sleep study, have a CT scan, med lab work done and see Dr. Aduen, his pulmonologist. Sometime before we head up Fred will have blood work done here and the results will be send to Dr. Solberg.

We were very fortunate to go on a nice vacation to Maui and got to relax, which was truly needed. Other than the sleep issue and the 6 hour time difference, Fred did well. He did one business trip and again did well.

We are just keeping our fingers and toes crossed.

Monday, August 24, 2009

We have waited a year and a half for some good news....we got it. There is "no leukemia in Fred's marrow at all". His blood counts are coming up. He does not have to have blood work done until November and if everything goes all right he does not have to see Dr. Solberg until February.

Fred is always going to be immune suppressed, which means he has to take his usual precautions. We also know that his CLL will come back, but the longer he is in remission, the better.

The pathologist did not feel that he needed to run any further tests at this time on the MDS (myeledysplastic syndrome)due to the normal results he obtained in the marrow tests. So at this time that is not a concern.

We both walked away from Mayo today a little stunned cause we haven't heard such good news for so long we did not know what to say. We do want to thank everyone for their prayers and thoughtfulness through this last year and a half...you have no idea how much it has helped.

Sunday, August 23, 2009

Well we are back in Jacksonville. Tomorrow we find out the results of Fred's bone marrow biopsy from last Monday. Keep your fingers crossed for good news.

Wednesday, August 19, 2009

Fred's temperature was back to normal Tuesday morning. He has been extremely exhausted and very sore. He is moving a little better today.

Just a quick update.

Monday, August 17, 2009

We are home now. Fred's bone marrow biopsy was painful as usual but those little magic pills as I call them makes him really loopy. The numbness is wearing off and he is in a lot of pain and running a slight temperature. Hope this goes away quickly.

Now for the week long wait to get the results.

Sunday, August 16, 2009

Well we are back up in Jacksonville. Tomorrow is "drill day" as Fred calls it...in other words, bone marrow biopsy day. Fred gets "drilled" at 8:30 am and then has blood work at 9:30 am and then we head home for a week on wondering.

We will be back up here next weekend to meet with Dr. Solberg for the results. Lets hope the hurricanes stay out away from us so we don't have to delay getting the results.

Sunday, August 9, 2009

Haven't posted lately, but Fred has been doing quite well. He gets tired easily but that is nothing new.

I am trying to keep him busy so he does not think about his next bone marrow biopsy on August 17th. This will be his third one and he remembers how it feels. Then there is the agonizing week of waiting for the results.

Keeping our fingers crossed for good news.

July 24, 2009

I know it has been a long time since I have posted, but that is good. Fred has done some traveling and I did not want to jinx it....anyways he went for blood work today and it actually isn't that bad....surprise!

White blood cell count: 3.0 (last month 2.2) still low, but up
Red blood cell count: 4.06 (last month 4.02) again still low, but up
Hemaglobin: 13.6 (last month 13.6) no change, still low
Hemocrits: 38.8 (last month 38.1) still low but moving in the right direction
Platelets: 161,000 (last month 134,000) good within range

We have not received offical word from Mayo yet, but they have to be pleased with these numbers....we go to Mayo on August 17th for the fun bone marrow biopsy and more blood work...I know Fred is looking forward to the fun!

Monday, June 8, 2009

We just returned home from our trip to Mayo Clinic. We had mixed results.

The good news is that the CLL is in complete remission. The q11 and q13 chromosomes are now in the normal range. It is expected to stay in remission for some time, and of course, the longer, the better.

The bad news is that the blood counts have shown no signs of improvement and remain quite low. This makes Fred susceptible to illness, infections, etc. After this much time has elapsed from the last chemotherapy treatment and the bout with pneumonia they should have returned to normal. The tests indicated a q20 chromosome deletion. This is an indication of Myelodysplastic syndrome (MDS). This is a side effect of the chemotherapy treatment.

There is a possibility that the MDS may go away on it's own (Dr. Solberg says he has seen this happen), it could remain as is which would require monitoring, or worse case, it could develop into another type of leukemia called Acute Myelogenous Leukemia (AML).

Next steps:
- return to normal living, including being able to travel within the United States. The normal living and traveling requires Fred to take lots of precautions.
- blood tests will be scheduled for early July and early August to monitor the MDS and CLL.
- in late August another bone marrow biopsy will be performed to monitor the MDS and CLL.
- decide if we want to go to MD Anderson for another point of view.

As Dr. Solberg said, "Fred is trying to see if he can test him on all the side effects from the treatment of the CLL".

This is a new thing thrown our way so we need to do more research to see where and what we do from here on.

Tuesday, June 2, 2009

Today was tests day! We drove to Jacksonville so Fred could have blood work done and a CT chest/abdomen/pelvic scan at Mayo. We are now home and we wait until Monday when we go back to Jacksonville to find out the results.

Monday, May 18, 2009 part 2

We are home! Fred's blood work was up some, but the number they were looking at was his ANC (absolute neutrophil count) which was 1.3 which is low but not bad considering what he has been through the last month. Normal is 1.7 - 7.0). Here are the results of his blood work today.

white blood cell count: 2.0 (up from last week, but low)
red blood cell count: 3.69 (down .01 from last week, low)
hemoglobin: 12.7 (up from last week, but low)
Hemocrits: 35.4 (low, down .2 from last week)
Platelets: 172,000 (Normal range, way up from last week)

His liver levels were up but that is from all the IV antibiotics he was on in the hospital and the oral antibiotics when we came home.

Since his ANC is above 1.0 they feel that he does not have to be on "house arrest" anymore, but does need to stay away from crowds and sick people and no travel for now. We are to follow up in 1 month.

The pulmonologist was amazed at how well Fred looked compared to when he saw him in the hospital. His CT chest scan (which we saw the CT scan from when he was in the hospital and the CT scan from today) was good. The infection is cleared up but there is some residual scar tissue from the infection which he said is normal. We are to follow up with him in 6 months. Fred also received a pneumonia shot since he is more susceptible to pneumonia now that he has had it and due to his CLL.

Monday, May 18, 2009

We are at Mayo and Fred has already had his blood work done and CT chest scan. Now we wait until 2:30 when we see KC and then at 3:30 we see the pulminologist.

Lets hope the numbers have come up to a more normal range and the CT scan was good.

Monday, May 11, 2009

Blood work again today. Mayo Clinic said there is a very, very slight improvement. Fred is to continue on house arrest. Here are the results:

white blood cell count: 1.9 up from 1.7 last week (normal 4.1-10.9)
red blood cell count: 3.70 down from 3.75 last week (normal 4.69-6.13)
hemoglobins: 12.5 down from 12.7 last week (normal 14.1-17.9)
hemocrits: 35.6 down from 36.0 last week (normal 42.5-53.7)
platelets: 130,000 up from last week 127,000 (normal 140,000-440,000)

Monday, May 18th we have 4 appointments at Mayo Clinic, blood work, CT chest scan, Dr. Solberg's assistant and Dr. Aduen the pulminologist.

Fred is tired a lot, but this is due to his blood counts.

May 4, 2009

Fred went for blood work today and here are the results:

white blood cell count: 1.7 (low) (normal 4.1-10.9)
red blood cell count: 3.75 (low) (normal 4.69-6.13)
Hemoglobin: 12.7 (low) (normal 14.1-17.9)
Hemocrits: 36.0 (low) normal 43.5-53.7)
Platelets: 127,000 (low) normal 140,000-440,000

Dr. Solberg is not panicked about these numbers, he is not happy with them, but not panicked, so I guess we shouldn't be. Fred is on house arrest for another week and to have follow up blood work again next Monday.

I told Dr. Solberg on our very first visit that Fred does nothing normal and he is now seeing that in his blood work, which not one thing is in the normal range. He was told by Dr. Solberg's nurse not to go to Mexico tomorrow. Got to have some humor.

Wednesday, April 29, 2009

Sorry I am late in posting, but after being on the computer all day at work the last thing I want to do is more computer stuff.

Fred went for blood work on Monday. His white blood cell count dropped by one point which is not good. Dr. Solberg feels it could be due to his antibiotics and since today is the last day on his antibiotic he wants blood work done again next week to see if his numbers come up. The only normal range was his platelets on his blood work.

So he is once again stuck in the house which is driving him crazy, but better that than being out where there is all kinds of germs. He still has been tired a lot, but hopefully that will subside when the antibiotic is out of his system.

Monday, April 20, 2009

As of 4:30 pm today Fred is still fever free, but has no energy.

Sunday, April 19, 2009

We got sprung! We got home around 3 pm. Fred slept all the way home (3 hour drive). He ate a sandwich and is now sleeping again. All he complained about in the hospital was how he couldn't sleep without being awakened every hour.

He has been fever free for 24 hours. If his temperature goes up I have to take him back. His white blood cells are low so he is prone to infection, so he is to go nowhere for now, but he is just glad to be home.

Now my work begins.

Saturday, April 18, 2009

Evening news:

His pulmonologist doctor came in and said his chest x-ray was the same, which is good because it hasn't gotten worse. He stated Fred's temperature last night is common following his bronchoscopy. As of 7:30 pm tonight he has been fever free all day, finally! If all goes well he maybe sprung tomorrow. We will wait to see how his blood work went.

I am going to bed early, I'm exhausted.

Saturday, April 18, 2009

I got to the hospital this morning and Fred's temperature was normal. The bronchoscopy did not show anything significant so the ordered another chest x-ray. We have not heard the outcome of those yet.

They took him off oxygen around 4 pm and he has been getting his IV antibiotics every 6 hours.

Right now all I can say is he a grumpy!!!

Friday, April 17, 2009

I am so tired so please bear with me as I try to write this.

Fred had his bronchoscopy this afternoon, we still do not know the results but he made it through the test. We will not find out some of the results until tomorrow. Some need to culture for 3 days.

He is also neutropenic so those numbers need to come up before he can be discharged.

This evening he started running a temp again. By the time I left the hospital it was 102.4. The nurse said not to plan on maybe getting out tomorrow no matter what the results of his tests are because he has to be temperature free for 24 hours.

That is all I can think of right now. I will keep you posted.

Thursday, April 16, 2009

Another long day. Fred's temp has been down (highest today 101.3). They have put him on 3 different breathing treatments to help his respiration which has been borderline today. The oxygen was removed for a while, but they put him back on it later this afternoon. The pulmonologist (not sure of the spelling) came in after Fred had a chest CT scan. He explained two procedures that could be done, one a bronchoscopy and another is surgery to open his chest to take a biopsy of his lung to see what bacteria we are dealing with. The least invasive is the bronchoscopy which Fred agreed to have tomorrow afternoon. Hopefully they will be able to determine with this procedure what kind of bacteria to fight.

Please say some prayers for him cause there are risks involved. He isn't a happy person right now. The good news is his appetite was much better today. Yesterday he did not eat anything and today he had regular meals. I thought that and the temperature drop were all good signs, but I guess until they find out what they are dealing with they don't agree with me.

Wednesday, April 15, 2009

The last two days have been really long. Right now Fred is in Mayo Hospital in Jacksonville. All day yesterday his temperature fluctuated between 101.5 and 104.8. I drove him to Jacksonville this morning cause they had the chest x-ray from Monday here. They admitted him and here are the results so far.

The pneumonia has expanded in his left lung and now into his right. They have him on IV antibiotics and his fever has come down some. He has no appetite at all. They plan on keeping him a few days. They are talking about doing a scope tomorrow into his lungs to see what bacteria they are dealing with. I will let you know as things progress.

Please keep him in your prayers.

Monday, April 13, 2009

I know it has been a long time since I wrote anything but remember no news is GOOD news! So since I am writing you know something has come up.

Saturday night Fred started running a fever of 101.8, we knew he had an appointment with Dr. Solberg at Mayo on Monday morning so I just shoved some Tylenol in him and on Sunday morning we headed up to Jacksonville. Fred's fever persisted and he was shaking because he was so cold. He laid on the couch in the hotel room with a blanket and watched The Masters. We ate some dinner and he went to bed around 8 pm. He did not sleep much and his fever got up to 102.5.

We went over to the clinic early to see if they still wanted to run blood work due to his fever. Dr. Solberg saw him right away and ordered some additional blood work, urinalysis and a chest x-ray. He sort of thought it was a viral infection and told us we could head home after the tests and to call for the results since there is nothing you can really take for a viral infection.

I drove home while Fred shook in the car cause he was so cold. After the 3 hour drive we get home to a message on the machine to call Dr. Solberg's nurse right away. Fred has pneumonia. Dr. Solberg called in two antibiotics for him to take and wants to see us back at Mayo later this week.

The good news was his blood work was good considering he has pneumonia. His white blood cells are 2.5; his red blood cells are 3.53; his hemoglobin is 12.3 and his platelets are 137,000. All good considering.

Fred is in his sweats (its 81 degrees outside) and on the couch under a blanket and trying to watch the Cubs opening day on TV. Actually I think he is sleeping more than anything.

I will keep you posted.

Thursday, February 12, 2009

We received further information from Mayo Clinic in regards to the Bone Marrow Aspiration that was performed last week.

Although the majority of the report is written in " Doctor Talk" and a normal person cannot understand, the final diagnosis is written in English.

The final diagnosis states - " Marrow changes consistent with treatment. No residual chronic lymphocytic leukemia identified".

So for now, the Leukemia is gone from the body. however as explained before, it will return, the question that still remains is when.

Next steps for us will be to return to normal living, working, playing, etc. Dr. Solberg said this should not occur until mid March because the body needs time to heal from the trauma it has been through. On April 13th, we'll be back at Mayo for more testing and to start exploring and understanding what lies ahead and the estimated timeline.

Thank you all for your support and prayers.

Love,

Carol & Fred

Friday, February 6, 2009 (part 2)

We're reaching for the "top shelf" tonight and celebrating! Since there is no cure for CLL, Dr. Solberg said he could not call it a "complete remission", but for now the bad leukemia cells are completely killed off and out of the body.

The immune system remains suppressed and it will be another 4 to 5 weeks before a return to normal activities.

In two months, it will be a return trip to Mayo and at that time we will outline the future course of treatment. At some point a Bone Marrow transplant is in the future, but Dr. Solberg thought it was best to hold off those decisions until April.

So for now, we're celebrating! Since I'm limited to only a couple of "adult beverages", I'm sure there will be a few of you out there that will hoist a few this weekend and join us in the celebration.

Thank you for your support and prayers,
Fred and Carol

Friday, February 6, 2009

Fred had his CT scan this morning and we are now waiting to see Dr. Solberg this afternoon. Fred has a cold and they put him on an antibiotic so I hope it kicks in soon. He is very tired. Keep good thoughts for this afternoon.

Thursday, February 5, 2009

Fred had his blood work and bone marrow biopsy this morning. He was a nervous wreck about the biopsy, but luckily they gave him some Adavant to take 1 hour prior to the procedure. I ended up giving him another one about 15 minutes before the procedure cause he was still a nervous wreck. He wasn't feeling too much pain (if you know what I mean) by the time he had the biopsy. Needless to say he has been sleeping soundly since.

I went to pick up a prescription for him and to get him some lunch that he wanted, but I don't think he even knew I was gone and he doesn't even know that I am back already. I am hoping he sleeps most of the day and the pain from the procedure isn't too bad.

We know they have to send the bone marrow biopsy results to Rochester, but they do some of their own preliminary tests also from the bone marrow, so after his CT scan tomorrow we are hoping that Dr. Solberg will have some good news for us tomorrow afternoon.

Wednesday, February 4, 2009

We just arrived in Jacksonville. Sorry I haven't posted lately but Fred has been doing well. He still gets tired easily, but otherwise has been doing great.

Tomorrow Fred has the dreaded bone marrow biopsy and blood work done. On Friday he has a CT scan and then we see Dr. Solberg and hopefully find out where we go from here.

Wednesday, January 21, 2009

Fred has his blood work done today, here are the results:

White blood cell count: 8.5 (great)
Red blood cell count: 4.2 (low, but coming up to normal range)
Hemoglobin: 14.2 (great)
Platelets: 183,000 (great)

Great blood work today, thank you for your prayers.

Wednesday, January 14, 2009

Fred had his blood work done today. Here are the results:

White blood cell count: 6.8 (great)
Red blood cell count: 3.69 (low, but has been around this number for a while now)
Hemoglobin: 13.4 (low, but okay)
Platelets: 133,000 (low, but okay for now)
Lymph%: 6.3 (low, but okay for now)

Mayo was pleased with the numbers so now we wait for next week's blood work.

Tuesday, January 13, 2009

This long winded blog update is being done by Fred. Please excuse the grammar/spelling, etc as I work through my "Chemo Brain" from last week's treatment.

I want to thank all of you for your thoughts, prayers, cards, e-mails, blog postings, phone calls, etc during this challenging period of my life. They are and have been greatly appreciated and have lifted my spirits, especially during those rough days.

To set expectations, while it is anticipated that the Chemo Treatment of Fludurabine, Cytoxan and Rituxan (FCR) will be completed, this is only one step of a long battle. The type of Leukemia ( aggresive B type CLL) I have, will return, it's not a matter of "if", but "when". When it does return, it will be with a vengence and in all probability the FCR Chemo treatment will not be effective in bringing this under control.

On February 5th, I will be having a Bone Marrow Aspiration. It's as bad as it sounds, just think of a cork screw into your hip bone. This test will provide information that will allow Dr. Solberg to make an estimate of how long before the Leukemia returns. As he said to us, hopefully he can say "it's X years and and not X months". We're pretty optimistic based on my previous test results, but will have a better idea on February 6th when we review the Bone Marrow test results with the Medical team.

Keep the prayers coming.

Thanks,
Fred

Monday, January 12, 2009

Fred is feeling better today. I let him go for a walk outside tonight. He has blood work scheduled for Wednesday. I will keep you posted.

Friday, January 9, 2009

We are home from hopefully the last chemo treatment for a long time. Fred is real tired so he just needs to get plenty of rest now.

We want to thank everyone for their prayers and well wishes we have received through the last nine months. WOW! Nine months, what a blur. You have no idea the power of family and friendship until you are faced with all this. Thank you.

Thursday, January 8, 2009

CHEMO IS OVER!!! Hopefully we won't have to go through this again for a long time. Please pray that next month's tests will prove remission and good news.

Tomorrow is only the Neulasta injection and then we will head home. Fred was not feeling well this morning before his treatment and he is sleeping now. Hopefully after a good rest he will feel a little better.

He will continue to have his weekly blood work done for now. I will keep you posted.

Wednesday, January 7, 2008

Day two of cytoxan and fludarabine is over, one day to go. Fred is sleeping now and is sort of "out of it". I will be amazed if he remembers later walking back to our hotel room.

Our youngest daughter, Amanda, came to Fred's chemo treatment today and helped me walk him back to our room. Now we just watch him sleep and hope he doesn't do anything stupid.

Tuesday, January 6, 2009

Today's chemotherapy of fludarabine and cytoxan is over. One day down of this cocktail, two to go. Fred is tired, but otherwise is doing fine so far.

Monday, January 5, 2009

We are at Mayo Clinic in Jacksonville for hopefully Fred's last chemo treatment for a long time. Fred had blood work this morning, here are the results:

Red blood cell count: 3.44 (low, but ok)
White blood cell count: 7.5 (great)
Hemoglobin: 12.6 (low, but ok)
Platelets: 152,000 (good)
Lymphocytes%: 2.5 (low, normal 17.8-41.5)
Neutrophils%: 85.6 (high, normal 44.4-70.9)

The lymphocyte and neutrophil percentage shows that the chemo is working (lowering lymphocytes (bad) and raising neutrophils (good). At least that is how it was explained to us.

Fred had his Rituxan chemo today. He slept through most of it thanks to the 50mg of Benadryl, which is okay since he started at 11:15 am and got done at 4:00 pm.

Tomorrow is the cytoxan and fludarabine cocktail.

Currently Fred is scheduled for his bone marrow biopsy on February 5th and another CT scan on February 6th to see where he stands.