Radiating

Before I received my order for the PET/CT, I came down with bronchitis! Was on antibiotics and inhaler for 10 days.  Coughing was so painful! Steve had it before me and is still trying to get well. He was at the doctor again this week. Doctor was concerned about wheezing and rattling in his left lung so sent him for an x-ray, gave him a stronger antibiotic for another week, and 5 days of steroids. The past few weeks have been a challenge with the two of us ill; but we managed to gimp around and take care of ourselves.
     Finally got my orders for a PET/CT and that was done last week.  The report showed compression fracture and lesions of T8 vertebra, lesions in sternum and two fractured ribs that appeared to be healing.  The ribs are #8 & 9 so are connected to the vertebra.  Met with Radiologist on Tuesday for consultation and determination of what would be treated.  For now, radiation will be done on the vertebra and the sternum.  She's not sure what caused the ribs to fracture but didn't see any "hot" spots that she felt needed to be treated.  The fact they fractured, whether it was from lifting something heavier than I'm supposed to lift or from coughing with the bronchitis, shows they are definitely not as strong as they should be. The unknown is whether that is from the cancer or the years of steroid use in my treatment. Since all of this began, I now have developed pain and weakness in my left leg.  The Radiologist said we will re-visit the leg issue after this other radiation is completed.  She said there is a spot developing in the sacra ala area that it could be related to, but also wondering if it might improve once the back is treated.
     It was extremely painful having to lay on a hard surface for the "mapping" and "tattooing" to be done and now for the radiation treatments due to the compression fracture. The pain has been so intense at times that I thought I was going to throw up!  I tried taking 2 pain pills before treatment and that didn't seem to help much.  Now, I will be sure to have anti-nausea meds on board, too!
     I now have 3 tiny dark pin spots tattooed on my body as reference points for the tech who does the radiation.  I will have 10 treatments.  Fortunately, my doctor in Chico had someone he could refer me to in Redding for these treatments. So much easier since I have to go everyday.  Although, the back-to-back holiday weekends will slightly alter that.  Maybe it will be easier to weather through all of it with 3 day weekends rather than 2 day weekends; and, since I started in the middle of the week, just 3 treatments this week.
     Side effects should be minimal. A couple sunburn like spots where radiation beam hits skin, maybe a little difficulty swallowing in the lower esophagus.  Tech said side effects probably won't manifest until second week or later.  Blood counts might be slightly affected, but those are being monitored already for my chemo.  
     The new drug was approved!  I started taking it last Friday and will double the dose this Friday. The increased dose will remain as long as I'm on the drug. After the radiation is complete, my USCF dr wants to add a second chemo drug to this one.  The ongoing treatment and medications will be reviewed and determined when I see him again in January.
     Thank you for all the Christmas cards, letters and photos!  So nice to make this connection with everyone at this time of year. We send our prayers that you each will have a Christmas and New Year blessed with His peace.  
    

Home again for now

The good news is that I am home and there is a game plan.  The bad news is there are multiple lesions in my bones from the cancer activity.  The worst is in my sternum, where I have the most pain.  A lesion hurts just like a fracture even though the bone isn't actually broken, it has thinned or has a hole in it. Every breath I take hurts - I cannot sneeze, cough, dress myself. Getting in and out of bed is painful due to the muscles pulling across my chest.  I am living on pain meds for now. He did prescribe a stronger one than they were willing to give me at the ER.

The lesions in my back are not near as painful as my sternum, but do need pain meds to be able to lay on my back at night. Another bit of good news, my myeloma doc at UCSF was able to get an emergency appointment with a doc at the spine center following my appointment with him.  It was answered prayer that she had a cancellation and an opening immediately following my appointment with him.  She was wonderful!  They have a Bone Density Health Institute there and she felt I could benefit from meeting with them; even though I fight the double-whammy of the cancer destroying the bones and the steroids needed to fight the cancer also destroying the bones. They already called and set up an appointment for January.

Pain meds will keep me somewhat comfortable while we work through all the other parts of the game plan.  First of all, I will take 20 mg Dex for 5 days (high dose steroids). Not looking forward to coming off of those! Next a PET/CT scan and full spine MRI are to be done asap.  When my docs can view those, radiation will probably be ordered on the "hot" spots,  He anticipates daily for 1-2 weeks. This will probably be done in Chico.

The next step is changing my chemo drug.  I've run out of options of designated chemo drugs for myeloma.  The options now are 2 weeks in the hospital with a cocktail of general chemo drugs used for many cancers.  The other is trying a drug that is "cross-label".  This means it has been successfully used for other blood cancers, but no clinical trials to substantiate its use for other blood cancers; in my case, myeloma. There are certain genetic characteristics that are the same or similar in the blood cancers where, in individual cases, there has been success with using a drug cross-label.  The biggest issue is whether the insurance company will approve its use and assume the cost.  He is going to try to get approval for a drug called "Venetoclax" for me. It is used successfully in CLL (Chronic Lymphocytic Leukemia). There are some genetic markers that make him think we might have success.  Ironically, this is the cancer that took my brother Chuck's life. 

We are really praying for a miracle of favor with Medicare, as they typically will not approve use of a drug that has not received FDA approval for a specific disease.  Approval comes after clinical trials have substantiated success. This has not been done for its use in Myeloma.

So, even though I am home for now, the looming prospect of 2 weeks at the UCSF hospital is still a possibility. In the meantime, we are looking forward to Christmas and celebrating the birth of our Savior. 

Hospital?

Am on my way to UCSF to see my doc there.  He is quite concerned and is seeing me on a day he is not normally in the clinic and is on his way out of town to a conference.  He has suggested 2 weeks in the hospital for intensive chemo, but will think of other acceptable options for outpatient treatment.  If I'm in the hospital, you won't hear from me for a few weeks.  If there is another game plan, I will update again soon.

Your good thoughts and prayers are needed and appreciated!

ER visit!

After such a glowing report in my previous blog, there is bad news this week.  First of all, my cancer numbers jumped up significantly. Secondly, I have additional fractures and now have lesions in my spine.

About 9 days ago, I was suddenly hit with terrible pain in the middle of my back, accompanied by muscle spasms and weakness, which began spreading throughout my entire body.  I got my back brace out and started wearing it again and toughed it out over the weekend with some tylenol until I could reach one of my doctors on Monday.  My 2 oncologists were out of town and my primary was booked for the 3 days before Thanskgiving.  Finally got a hold of my nurse at UCSF.  She was going to send an order for an MRI and email the updated labs to my doctor.  Of course, with the holiday, everything was at a standstill.  I must say, the pain did put a damper on the enjoyment of Thanksgiving!  After a week of suffering and the pain increasing, I finally headed for the ER in Redding early Saturday morning. After multiple doses of various pain meds, I was finally more comfortable.  A CT showed a compression fracture in my vertebra but there were also lesions (thinning or holes in the bones which is one of the negative processes of myeloma). After the ER doctor consulted with an Interventional Radiologist, he said it could not be repaired.  They sent me home with a prescription for Vicodin which helps very little and is only enough for a few days.

Missing from my packet of discharge papers was the copy of the CT report that I requested!  So, first thing Monday morning, I will have to go to Medical Records at the hospital to get a copy and get it faxed to my UCSF dr.  He will be in town for just a few days before leaving for a conference.  My local oncologist will not return until the following week, and as it stands now, they can't give me n appointment until January!

Your prayers are greatly needed right now as I try to deal with the ongoing pain, still function on a limited basis, and not do anything that would cause further injury.  Steve even has to help me dress, and get in and out of my back brace.

Will post an update as soon as there is additional information.

Finally! A word....

To those curious as to my absence from my blog, I am alive and doing relatively well for my condition.  I have been busy living life! A very overdue update of some length follows.

As I previously stated, my doctor at UCSF put me on oral Cytoxan without steroids in July.  My numbers came up some the first month.  The second month they stayed the same.  We'll know by Thanksgiving the results of the next test and are hoping things will stay steady.  I have done fairly well on the drug.  I do have muscle aches, some weight gain (a side effect I can always depend on!) and have to be careful about some foods, but otherwise have done fairly well. My hemoglobin has been just below.  My platelets are normal but somewhat on the low side.  My white blood count has taken the biggest hit with this treatment.  They are consistently very low but not quite to the point of needing shots. This requires that I be ultra careful about exposure to illness and/or germs in general.

It is a great relief to be free of the side effects of the steroids the past few months!  The water retention, weight gain, muscle weakness, interrupted sleep cycle and mood swings have not been missed!

Another try with the chelation drug produced an even more severe reaction.  After just 2 doses, I had to stop taking the drug and go on a declining dose of steroids for a week. Since my liver enzymes continue to be slightly elevated my doctor at UCSF still wonders if it is due to the excess iron. He said in order to try the chelation again I would need to take it with steroids.  Neither he nor my local doctor has pursued this further at this point.  I don't see my doctor at UCSF again until January unless there is a problem.  

Ongoing problems with the hives/rash situation took me to my allergist for testing for possible food allergies.  After more blood tests, it was found my thyroid antibodies are high and he felt this was contributing to the problem and didn't feel testing for food allergies was warranted. At some point, the antibodies will destroy the thyroid completely and medication can be given at that time to overcome the problem.  In the meantime, I have to just put up with the situation.  However, I still feel I have reactions to certain foods so am being cautious about eating them in small portions and not too frequently.

Jeremy & family moved in with us at the end of July while they were waiting for their new house to be finished.  Not being tethered to an IV pole every week and having house sitters, we were able to do some traveling.

Two days after Johanna & kids left for their new home in New York, we headed north to Seattle area for the wedding of Steve's cousin's son.  It was a beautiful "destination" wedding at a venue in the forest just outside Mt Rainier National Park. Everyone stayed in various cottages or their house trailers in the immediate area. It was a most enjoyable weekend of visiting with many of Steve's relatives and participating in various activities planned by the bride and groom or others, in addition to the beautiful ceremony.  On our way home, we made a quick stop in Portland to see our little granddaughter, Wallis, and her parents, too, of course.  We took the long way home from there heading out to the farm country outside Arlington, Oregon, to spend the day with my oldest brother.

We were only home 2 days when we headed south to attend the 90th birthday party of one of Steve's relatives in Corona area.  Another one was turning 97 and one turned 90 the year before! This is the branch of the Blair family that Steve lived and worked with for approximately 15 years before we married and moved north.  Again, it was a great time with the opportunity to see many relatives, some having traveled a great distance to be there. We were also able to spend an evening with some good friends of mine and an evening with some of my 1st cousins.

The weekend after Labor Day found us in Glenwood, MN, Steve's home town, for his 55th high school reunion.  I enjoy his reunions just as much as he does, I think.  These are my kind of people and I've developed some friendships myself over the years. Steve also has a brother and sister in the area, and a sister in Minneapolis.  We felt very fortunate again for so many opportunities to see so many relatives. It had been 5 years since we were last there.

Jeremy & Holly were finally able to start moving into their home the second week of October. Then we made one more trip before the weather changed and illness/flu was setting in for the winter.  We made the long flight to New York to visit Johanna and family and see their new home.  However, we didn't quite make it before the weather changed.  We spent quite a few days with pouring rain and even snow one day! In spite of the weather, we were able to make a side trip to Niagara Falls before heading up to Johanna's.  Then all of us went to see the St. Lawrence River/Seaway just about 40 minutes from her place.  The colors on the trees were still beautiful and apple season was in full swing.  A trip to a local Cider Mill to watch them make fresh cider found us loading the car with fresh apple cider and lots of apples. The following days were spent making applesauce, apple butter, baked apples, apple crisp, in addition to enjoying a fresh apple to munch on. It brought back memories of my early childhood when my mom ran our family business (Holmes Fruit Company) while my dad was in medical school.  The produce stand was located in southern California along the now historic Route 66 and our specialty was Washington state apples, fresh cider, popcorn and every variety of Smucker's jams and jellies before they were so readily available in grocery stores.

It was fun to be able to travel and see so many people even though I had to rest everyday and be careful about my exposure.  I did come home pretty tired after each trip and needed a few days of rest then gradually catch up with mail, bills, unpacking, laundry, etc.

After all the fun of travel and getting to visit with so many people over the past 3 months, we did come home to the memorial service and testimony of a fellow support group member.  He and I started the support group together about 8 years ago.  It was a reminder that this complex cancer eventually becomes unstoppable in spite of the latest drugs, in spite of intense therapy with the harsh drugs that are still available, in spite of radiation, in spite of our prayers. However, we do rely on your prayers which really do sustain us day to day as the reality of this cancer and the eventual outcome is ever present.

It's Complicated!

     It has been an interesting couple of months and now we're on to the next chemo drug, which has been used before unsuccessfully. Cancer numbers dropped quite a bit the first cycle on the Bendamustine, then leveled out with just slight up and down variations in numbers.  However, after the third cycle, I broke out with hives and rash, which was troublesome to my Dr at UCSF.  The steroids at the beginning of the 4th cycle seemed to almost take care of it. However, enough was still hanging on, that the decision was made to move on to something else.  The hives began again about the same point in the 4th cycle, which I had started before my appointment with my UCSF Dr.  Now interject the Jadenu, which is the chelation drug for the iron overload.  I have started taking it intermittently to begin to reduce the iron overload from all the transfusions last year. The hives/rash seemed to get worse when I started taking that and it does cause hypersensitivity like I am experiencing.
     A low dose of oral Cytoxan daily and no steroids is now my treatment plan for what is hoped will be "maintenance".   My numbers, if we're able to maintain them, are at a livable place and it appears that we aren't going to get them any lower at this point.  However, close monitoring of my blood counts weekly will be done as this drug will lower those and then it will be a battle of keeping them adequate with either shots or transfusions.
     The reaction to the Jadenu may cause a discontinuation of that drug and the chelation process.  However, there are several things we're going to try before abandoning it altogether.  I already take Allegra everyday for allergies.  Benadryl will be added at night. If necessary, low dose steroid (Dexamethasone). Also, will spread out doses even more, if necessary, in addition to lowering the dose.  Have a window over the next few weeks to work on this before starting the Cytoxan and those side effects begin.
     Holly has been seen by my oncologist, who she really liked, and was reassured she did not need chemo.  He will be monitoring her every 6 months with specialized blood tests in order pick up a problem immediately.  There is a genetic counselor available through his practice, so a future appointment will help assess her particular situation. We are very thankful for this good outcome.
     All of the family were here last weekend!  Johanna and her two kids arrived for a month-long visit while her husband attends a required course.  They will re-connect at their new home in New York in August. Jesse & family came from a camping trip on the coast and have now headed home.  It was a busy weekend, but lots of fun with all 8 grand kids running around. It's a little like herding cats! But these are the days I fight so hard to stay alive to enjoy!
     It has officially been 9 years now since my diagnosis and prediction of 6 months to 3 years of life expectancy back in July of 2007.  We are so grateful for God's faithfulness to us and for the doors that have opened for tremendous progress in research and development of new drugs that have been available at just the right time.  We are so grateful, also, for my two amazing oncologists - local and at UCSF.  And, we are very grateful for our faithful family and friends, for your love and prayers.  Keep up the good work!

Salvage Therapy

     Well, the excitement of the new antibody drug was short-lived.  It quit working at the end of the second month.  We had a trip planned to Florida to see our daughter and family there and my
UCSF dr said to go ahead and go.  We saw him the day before our departure and he suggested an older chemo drug used for Leukemia and Lymphoma that has had some success in its use with myeloma. The drug is called Bendamustine or it's brand name is Treanda.  It is an alkylating drug. Hair loss and neuropathy were not listed as side effects, although there were plenty of others.  I began the new regimen the day after we returned from Florida.  I am able to get this treatment in Chico so we are not having to travel to San Francisco. I have infusions 2 days in a row every 3 weeks.
     The first cycle of treatment went pretty well.  The side effect that I had the most difficulty with were the days following the high dose steroids.  Dexamethasone 40 mg days 1/2; 20 mg days 3/4.  Then you stop.  I slept almost round the clock for 2 days then felt lousy and draggy the next 2 days.  This week I am feeling quite good.  My blood tests this week show my white count is normal, my hemoglobin is a little below normal but is actually quite good for me.  My platelets are well below normal and seem to be the one thing that has taken the hit from this first cycle of treatment.  Second cycle starts next week and it will be several weeks before we have some results to see if it's working.
     I was quite surprised how good my blood counts were when tested the 1st day of treatment.  My free light chains had gone down significantly even though I had no treatment for 4 weeks.  My particular form of myeloma (non or very low secreting) makes it very difficult to track my cancer load.
     We had a wonderful time in Florida!  We flew to Jacksonville; then drove to St. Augustine.  Steve had located one of his best friends from college that he hadn't seen since they graduated!  It was a really fun 2 days for them to catch up and for us wives to get acquainted.  St. Augustine is the oldest continuously inhabited city in the US.  The architecture was beautiful and the cobblestone streets still existed in the downtown area.  For those who don't know, the Fountain of Youth was discovered there by Ponce de Leon.  We drank the water and can assure that in spite of it's name, it is a myth!  The highlight for me, though, was getting to hear the 5-manual Aeolian pipe organ in one of the beautiful churches!  The organist was practicing his prelude for Sunday morning and was doing an hymn arrangement of "Great is Thy Faithfulness".  It was a spiritual moment for me as I sat there and contemplated the words to that hymn and enjoyed an instrument that I spent many years playing. Then it was on to Pensacola to see the grand kids!  Bergan is talking a lot now and Mimi & Papa were glad to have many conversations with her.  They say the cutest things sometimes!  Whit was starting to walk and it was fun to enjoy watching him trying to gain his balance.
     Our family is all doing well with the exception of Jeremy's wife, Holly.  She had surgery for colon cancer last week.  What a shock to all of us for that diagnosis at such a young age (35)!  The surgeon took 10 inches of her colon and said he had a clean margin so no chemo needed.  However, she does have a 50% chance it could return, so she must have a colonoscopy every 2 years.  He also said that her family (parents, brother) should have a colonoscopy soon if they haven't had one recently.  Also, genetic testing on their boys to determine if they are carrying a particular gene that would make them susceptible to the same problem at a young age.  If they are positive, they will need to start having a colonscopy by the time they are 30.
     I'm a firm believer in always having something to look forward to besides treatment and side effects.  So, it's off to Ashland this weekend with a few girl friends for our annual trip.  At the Oregon Shakespeare Festival we'll see "Great Expectations" and the Gilbert & Sullivan musical "Yeoman of the Guard".  At the Cabaret, the musical "9 - 5".  Of course, there will be shopping, eating, wineries, an Art Faire in Medford.  My cousin, Sandi, who lives in Medford, will join us for some of our activities.
     We thank the Lord everyday for our faithful family and friends who hold us up in prayer!  We couldn't survive this journey without those good thoughts and prayers that are spoken on our behalf!

New Treatment Working!

We received the good news this week that the new treatment is working and my cancer numbers are beginning to go down!  We are still having to drive to UCSF every week and have learned this will continue for the foreseeable future.  It is taking time for the drug company to make enough to adequately supply all the cancer centers that are requesting the drug. UCSF was one of the locations that was doing clinical trials with the drug and with my particular doctor there; so, they were able to just increase the supply needed.  We are so grateful that we have this connection to be able to get on the drug so quickly.  It will be sometime, yet, before it is available in Chico, where I normally go for treatment.

In other good news this week, our 8th grandchild made his appearance on the Monday the 1st!  Maxwell Reid Hatcher weighed in at 8# 10 oz!  We now have 4 grand girls and 4 grand boys!  Feeling blessed to be alive to enjoy them! 

Jeremy's construction loan recorded today so they will begin work on their house which will be just a half-mile down the street from us.  Steve will have fun playing in the dirt over the next few weeks as he drives his backhoe down there to help with digging trenches for foundation, underground power, etc.  You know that boys and toys just get bigger when they grew up!

The middle of January, one of my niece's, Gillian, who works for the Washington Post, made a quick trip out to visit us over a long weekend.  Well, it wasn't really so long since traveling from the east coast to the west coast involves a long day of travel.  But we crammed a lot into the 2 days we did get to spend together.  It was great fun going through old photos from my and my brother's childhoods.  It was especially fun to tell stories from my childhood without them here to interject their side of the story!  haha...

Lots of good things in the recent weeks; however, I continue to struggle with UTI's and sinus infections.  Respiratory issues are a side effect of the new drug.  But the end result is that I seem to go from one antibiotic to the next.  Matters for continued prayer.

Thank you for your continued interest and  for keeping us in your thoughts and prayers.  It would be difficult to continue this ongoing battle without your support!

New Treatment Begins

Our Christmas was immediately followed by a trip to Texas to attend the wedding of my niece's youngest daughter.  We got off the plane to a cloudy day of 27 degrees and snow on the ground.  Brrr....!  Everywhere we went people were sick with colds or still coughing from a recent one.  The next day after our arrival we were both getting sick.  I travel with antibiotics to take the minute I have a fever and always wear a mask on the plan, so I recovered quickly.  Steve's cold was a little worse and he ended up on antibiotics when we got home.  So thankful I was still able to get my first infusion of the new treatment on the 5th when we returned!  My UCSF doc had me refill my antibiotics and take it for a second week as some of the side effects from the new drug are in the respiratory system.

The first infusion was a long, rough day; but I was at peace thanks to the prayers of so many.  The nurse thanked me at the end of the day for not panicking when I started reacting to the infusion.  Pre-meds are given before the infusion begins - 650 mg Tylenol, 25 mg benadryl and 4 mg Dexamethasone.  Thought I was going to be able to avoid the Dex, but it is still a part of this treatment even though a lower dose and it has to be taken on the day of the infusion and for the 2 days following.  On the first day, side effects are most often expected within the first 1 1/2 hours of the infusion.  I made it 55 minutes.  Then the chest tightened, I started to cough, got nauseated.  Infusion was stopped and was given more steroids and benadryl.  Then I got the shaking chills.  Six layers of warm blankets didn't help.  So Demerol was given and they soon stopped.  After an hour, they began again at a slow pace and gradually increased the rate until they were at the maximum. It was a 12-hour day - checking in at 7:15 and leaving around that time in the evening.  We are continuing to drive to San Francisco every week as my local cancer center is not ready with this new treatment yet.  

Tuesdays continue to be a long day for us.  As a precaution, due to the infusion reaction on the first day, they continued to dilute my drug in a 1000 ml IV bag, which is normally only done the first day.  Since I have had no more difficulty, this past week it was diluted in the 500 mg bag. Now my infusions will only take about 6 1/2 hours once they begin.  Lab work is done first.  Then when those results are available they give the pre-meds.  The infusion begins an hour later.  It's still a long day, but not quite as long.  We've been going to bed at 6:00 pm on Mondays and leaving home around 2:00 am to avoid the morning traffic.  I pack our food for the day so we eat some "breakfast" when we arrive.  One more week of this schedule, then we can have a later appointment in the morning and leave home around 6:30 am.  Our return will be after dinner and a little later in the evening; again hoping to avoid the heaviest traffic.

We should know by the end of next week if the treatment is working.  

Please pray for our safety on the road with the long travel days and distance.