Meal offers

For all of you that have offered meals we now have an idea when we can use them the most. How chemo will affect Vonnie is still a big unknown.  We read the smell of cooking in the house can be hard to tolerate to some chemo patients for a few days after chemo treatments.  If the offers are still available we would gratefully accept any meals for the days following Vonnie's chemo treatments.  This is not to say that Len can't cook ...........  but his repertoire is limited.  

The following dates are those we currently expect to be chemo days:

April 2 - chemo #1

April 16 - chemo #2

April 30 - chemo #3

If tolerated the next three will continue in two week intervals.

Please contact us by email at: lvsypkens@gmail.com or call Len's phone at: 560-0052 and leave a message if he can't answer.  He will get back with you.  

Thanks to everyone for all your help and support!!

Therapy schedule

It has been a busy week and it’s only Tuesday plus there is more to come.  As I wrote in the last entry we saw the oncologist yesterday and formulated our plan for chemotherapy and boy is it aggressive.  Today we had an appointment with the lymphedema clinic for an evaluation and counseling.  They took measurements and everything looks good.  Vonnie is at risk for lymphedema because they removed so many lymph nodes so she needs to be very careful from now on.

The next appointment was with the plastic surgeon.  Using the information from the lymphedema clinic, and his own evaluation, he wrote a prescription for a compression sleeve. This will be worn during strenuous activities, exercise, and air travel.  Then we discussed the timing of our procedures.  Based on the opinion of the oncologist and the plastic surgeon we decided to have the second mastectomy after the ten rounds of chemo are done and prior to radiation.  While she is under for this mastectomy the plastic surgeon will be able to replace the right breast expander with the final implant and will also start the left breast reconstruction.  It will be good to get this all done at once and not need additional surgeries.  The last thing he did during today’s appointment was to add more saline to the breast expander.  Vonnie is feeling very full and heavy on one side.  If you hear any of our biking friends commenting that we are leaning to the right they are most likely not talking about our political views.

The Cancer center called today and informed us that they scheduled Vonnie for a surgical procedure tomorrow (Wednesday) to insert a port which will be used for the chemotherapy.

The following information on ports is copied from www.breastcancer.org.

The port is about the size of a quarter, only thicker, and will show only as a bump underneath the skin. There are several benefits to having a port:

• No need to find a vein every time you receive chemo. A special needle fits right into the port, so all you feel is the stick—not the poking, prodding, and false tries in your arm. The nurse may numb the skin first with ice or a cream, to lessen any feeling at all. 
• A port may be especially valuable for women who might be experiencing some swelling of the arm on the side of their surgery. 
• The medication goes right into the main blood supply entering the heart, so it can be sent quickly and efficiently to all parts of the body. 
• Some types of chemotherapy can be very uncomfortable if injected into a vein just under your skin. The port avoids this potential discomfort. 
• Getting blood for blood tests can usually be done through the port, decreasing the number of times you need to have a vein "stuck." (I am told that they don't draw blood from the port here - Len)

The last appointment this week is Friday with the breast surgeon.  Then chemo starts next Thursday, April 2!

So here is the schedule as we believe it will go:

6 rounds of FEC chemotherapy every two weeks ending June 11.

4 rounds of Taxotere & Carboplatin chemotherapy every three weeks ending August 27.

1 year of Herceptin given every three weeks starting probably early July.

Mastectomy with reconstruction on left breast + right breast final implant around the 4^th week of September.

Radiation given every weekday for 6 weeks starting late October

 If all goes as planned, and assuming she can tolerate the aggressive chemo schedule, we should be done be late November or early December (other than the Herceptin).

 So chemo starts in just over one week.  Is she excited!  Hmmm  I would say not really but is just anxious to get through and done with this.

Oncologist

We had our first appointment with the oncologist today.  He is putting Vonnie on a very aggressive course of chemotherapy.    Because cells were found outside the lymph system and there are independently forming tumors forming in the breasts he feels aggressive chemotherapy is warranted.  Starting next Thursday she will be going every two weeks and getting a combination of three chemo drugs  (5FU, epirubicin and cytoxan) commonly called FEC.  There will be 6 doses (12 weeks) of this therapy.  Each chemo will be followed by an injection of Neulasta on the following day to increase the white blood cells. The Neulasta costs over $3000 per injection. Can you imagine how much the chemo must be!!. Following these 12 weeks she will have 12 more weeks of Taxetere and Carboplatin given every three weeks.  By our calculations we are looking at 24 weeks of chemotherapy ending a week before Labor Day.  Somewhere during the Taxetere and Carboplatin regimin she will also begin a year long therapy with Herceptin also given every three weeks.  

Another question that was answered – she will lose her hair. Apparently all hair! Head, underarms, legs, perhaps the eyelashes and eyebrows… Lovely!!

So many questions

It’s Saturday and we are going to treat our selves and go out to a movie.  We are trying to get back to as much normalcy as possible.  The pain and swelling on the right side doesn’t seem to be subsiding, at least not as quickly as was suggested by the docs.   The pressure under the expander along with the swelling in the underarm area is disconcerting.  We now have an appointment at the Spectrum Health Lymphoedema Program for an evaluation, therapy consult and probably a compression garment.  This appointment is immediately followed with an appointment with the Plastic Surgeon where we will again discuss the pressure under the expander.   These appointments are on Tuesday, the day after our initial visit with the Oncologist.  Finally there is an appointment with the Breast Care surgeon on Friday.

We still have so many questions.  Hopefully by this time next week we will have a better idea of the overall plan.  The order of the treatments is at the top of the list.  Chemo – radiation – mastectomy or Chemo – mastectomy – radiation?  The Radiation Oncologist wants to start a couple weeks after Chemo is done.  But what if they find cancer in the lymph nodes on the left side when they do the second mastectomy?  Would we need radiation again and cause more issues with the left side reconstruction?  The second mastectomy would need to wait until 3 – 4 weeks after Chemo to get the white blood cell counts up.  Can radiation wait till that is healed?  Sooo many questions!  We will keep you informed as we start getting answers. 

Visit with the Radiation Oncologist

Hello everyone,

My daughter, Julie accompanied me to my appointment today with the radiologist. It is definitely helpful to have a second set of ears when listening to your options. THANKS, JULIE! The doctor feels that the benefits of having radiation far outweigh the risks of complications from the radiation. So I will be having 6 to 6 ½ weeks of radiation after the chemotherapy is finished. It will be every day, Monday through Friday - half hour appointments. The most common complications that can occur are increased chance of lymphoedema and risk of loss of implant (50% chance of loss. "Capsule contracture."). So another decision has been made. Next step is the oncologist (scheduled for next Monday, March 23). I am feeling stronger every day. I still have a fair amount of pain in my upper right arm – but it is slowly improving. I hope to get this all started soon. I hate having this all going on when the weather is so great for biking, but I also want to get done with it. Hopefully we will be able to have some “good” days for biking this summer – if not there is always next year. We have also decided (unless the oncologist disagrees) that we will wait for the second mastectomy until after the chemo and radiation therapies are finished. My surgeon feels that it is more important to get the chemo started than to have it delayed by additional surgery. So, we will probably wait on that for now.

We are trusting in the Lord’s timing, and know that he will give us all the strength we need to get through it!!   We truly thank you and ask for your continued support as we face the long road ahead.

Vonnie (and Len)  

Waiting for the Oncologist

Doctors don't work on our schedule.  The idea was to meet with the oncologist and start chemotherapy ASAP but the Doc has the nerve to go on vacation.  So here is our schedule.

March 12 - Plastic surgeon (follow-up visit)

March 16 - Radiation Oncologist to discuss if radiation is needed 

March 23 - Oncologist to determine what chemotherapy we will use and set up our schedule

March 27 - Breast surgeon - coordinates all the docs

So again..... we wait.  

More decisions, More appointments & Sophie

Today was our follow-up with the breast cancer surgeon.  We were able to discuss the pathology report and start formulating a plan.  We are now making appointments with an oncologist, a radiation oncologist and a lymphoedema specialist. Final decisions still need to be made but the following is what was discussed.

There was a single cell found outside of the lymph nodes thus the referral to a radiation oncologist.  The feeling is Vonnie may need radiation of the axillary region where the lymph nodes were removed.   The hope is that this won’t be necessary since that greatly increases the risk of lymphoedema which is already a problem because of the extensive removal of her lymph nodes.  The referral to the lymphoedema specialist is also because she is already at great risk for lymphoedema.  Lymphoedema will cause great swelling in the arm and if left untreated, lymphoedema will often lead to a painful, swollen and debilitated limb.  This condition leaves the patient at risk for infection which can develop into severe complications. This is definitely something we want to avoid.

The results of the surgery were discussed.  The surgeon is positive that she got every thing in the right breast and there is no need for further concern in that area.  The left breast showed Grade 3 ductal carcinoma in situ which is a precancerous condition.  The tumor that was removed was cancerous but contained. She will most likely need to undergo a second mastectomy of the left breast with sentinel lymph node biopsy.  What needs to be determined is the timing of that surgery which leads us to the third referral – the oncologist.

Yes there will be chemotherapy.  As depressing as that is we did expected it since the lymph nodes were involved.  We can’t take a chance that some cells got loose somewhere else in the body.  This will be every three weeks for around 4 & ½ months.  She will also need to undergo Herceptin every three weeks for one year.  We don’t know yet how the scheduling will work with the two therapies.

So there we have it.  Decisions still need to be made but we have a good idea of what we are facing now.  Bald and Beautiful!  We decided to make a stop on the way home at a store called “Women’s Health Boutique”. We walked in to look around and came out with a wig!  They had one that looks very much like her own hair (color and style) and we discovered that our insurance paid for it 100%.  It even came with a name… Sophie. 

Len

Better News

Yes, it is me writing this update. I’m doing better everyday. I tire easily and am enjoying my much needed afternoon naps. My doctor appointment was cancelled for today (because I still have too much drainage from the surgery), but we did get the results from the biopsies. Good news!   Only 2 of the 28 auxiliary lymph nodes that were removed contained cancer.  We also got information on the biopsy on the other breast (the left breast).  Contrary to our earlier report, the left breast tumor tested positive for in situ ductal carcinoma. This means that the cancer had not broken through the wall of the tumor and was contained in the duct. We have an appointment on Monday with Dr App to determine if any further surgery will be needed. We are being referred to Dr Mark Campbell (oncologist) to determine what further treatments are needed.   I am not sure how soon that will be, but as you can imagine we are anxious to get this information and to get started on phase 2 of my recovery.

Your prayers have worked in remarkable ways. Our God has been watching over us and has given us the best news that we have had in over a month. Continue to keep us in your prayers – I’m sure that we still have a long road ahead, but with your help we will get through this and come out stronger in the end. We hope to soon be enjoying life on our tandem – even if we have to push it up a few hills this year!

Thanks also for all the meals, flowers, cards and hugs. We really feel your arms around us as we tackle this dreaded disease.

Gentle hugs to all,

Vonnie