The bone pain from the Neupogen got quite severe for Kim on Wednesday and Thursday so Kim called up the doctor to find out what to do. Kim's normal doctor wasn't around that day, but the on-call doctor was able to fax a prescription for Tylenol 3 (with codeine) to our pharmacy and that stuff did the trick for the pain.

Yesterday Kim was supposed to get a bunch of tests done at PMH in preparation for the stem cell transplant including a dental check up, blood tests, a lung test and a heart test. However, Kim's normal doctor at St. Michael's returned from her absence and was concerned about the bone pain Kim was having. So, just as we were leaving for the tests at PMH we got a call from the doctor at St. Michael's asking Kim to come in for an exam to rule out other possible reasons for the pain. We had to quickly call up the co-ordinator nurse at PMH to figure out what to do about all the other tests. The co-ordinator nurse proceeded to call Kim's doctor at St. Michael's and they ultimately decided that Kim should still go to PMH in the morning for her blood tests and dental check-up but then go to St. Michael's in the afternoon for the exam. There is still plenty of time for the heart and lung tests so those are being rescheduled.

Anyway, everything went fine in the morning at PMH. The dentist was super friendly and helpful and the blood test was fast. The problems started when we got back to St. Michael's. The doctor gave Kim a thorough exam and concluded the pain was probably just a delayed reaction to the Neupogen, but she ordered a CT scan anyway just to be sure. She wanted to be extra-cautious in order to avoid any problems that might delay the transplant procedure.

Kim may be mildly allergic to the contrast dye they inject when they do CT scans. On one of her first CT scans she got a very very light rash. Unfortunately any reaction requires that in the future a very strict protocol be followed before the medical imaging department will do the scan. This normally involves taking steroids 13 hours in advance and Benadryl 30 minutes in advance. Unfortunately, the doctor wanted the scan done immediately so that we wouldn't delay any of the critical stuff happening next week (third round of R-GDP and insertion of the Hickman line). So the doctor called up the medical imaging department and talked with the doctor there about how to get around the standard reaction protocol. They determined that it would be acceptable for Kim's doctor to give her steroids by IV and then Kim could immediately go up for her scan and the people at medical imaging would give Kim the Benadryl by IV just before they were ready to do her scan.

This all seemed reasonable since they had done something similar when Kim needed a CT scan during her last hospital stay. So Kim got her steroids and then we went up to get the scan. They immediately sent us back to the doctor though because medical imaging is a big place and the people we talked to claimed that they were unable to give Kim the IV Benadryl (they were not aware of Kim's doctor's pre-approval for this). So we went back to the doctor (who was pretty angry about our treatment at medical imaging) and she gave Kim the IV Benadryl. Then we went back to medical imaging where we were told to wait for our turn. All good. Unfortunately a trauma case came in through the ER and Kim had to wait longer than expected for her scan. So by the time Kim's turn came for the scan it had been too long since she received the Benadryl and they had to give her more. Generally things like the trauma are the reason you try to get the medical imaging department to give you the Benadryl since they know when the scan will actually happen. Frustrating!

Anyway the scan eventually happened but on the first try the tech forgot to unlock Kim's IV properly and the line burst splashing the dye all over Kim. Sigh.

We eventually got out of there though, and after a frustrating amount of traffic we got home. But at home we found our driveway blocked because a car accident had happened literally in front of our house. There were three police cars and everything. The accident looked extremely minor but it took them forever to clear it.

The good news though is that today Kim's bone pain has mostly gone away and she hasn't had to take any of the Tylenol 3 since Friday morning. So it seems like it really was the Neupogen and not anything more sinister. We'll get the results from the scan on Monday or Tuesday likely when Kim goes in for her third round of R-GDP.

Yesterday Kim had her stem cell collection and it was a long and tiring day. It was also a very successful day. They needed to collect 5 million cells and were able to get 6 million so they have plenty to spare. The procedure itself was pretty easy. It's very similar to dialysis. They take blood out of one arm, run it through a centrifuge to separate out the stem cells and then put the remaining parts of the blood back into Kim through her other arm. They cycle her entire blood supply through the machine multiple times. It took about three hours to do the actual collection plus another three to four hours of prep time and waiting time.

The biggest side-effect with all the collection stuff so far has been bone pain. After the mobilization chemotherapy Kim had to get daily injections of Neupogen to help increase the number of stem cells floating around her blood stream. The injections worked extremely well but unfortunately the better the drug works the more it causes pain in the bones (where the cells are generated). The effects should subside in a few days though.

Next week Kim will get her third round of R-GDP and then if all is good they'll do the transplant.

In other news, Patrick and Toni and their beautiful 15 month old daughter Kiera are visiting us from Australia and we couldn't be happier to see them. It's a very nice change of pace from all the cancer stuff.

Today was the big CT scan result day that would determine if Kim is a candidate for the stem cell transplant. We had all got ourselves into a very binary frame of mind. Either today would be excellent news and Kim would start a treatment that would hopefully end this whole mess or it would be very bad news. We were not prepared for an answer that falls in the vast grey area between those two extremes.

The two rounds of R-GDP reduced Kim's cancer by about 43%. This is good, but not good enough to do the transplant. However, because it is close, they are "giving her the benefit of the doubt." They are going to proceed with the stem cell collection as planned over the next few weeks. Then Kim will get a third round of R-GDP back at St. Michael's and then they will scan her again. The goal is to get the cancer to at least a 50% reduction. Assuming this happens the high-dose chemotherapy and stem cell transplant will occur later in June.

Today Kim started the mobilization chemotherapy that will facilitate the stem cell collection. This occurred at PMH and went extremely smoothly. They are super-well organized there. She goes back tomorrow and Friday for more treatment and then next week is a resting week. The target collection day is still May 30th.

The benefit of doing the collection before the third round of R-GDP is that we get the cells collected and stored without rushing and they will be ready to use as soon as the third round is done. Also the fact that PMH is willing to invest time and resources to do the collection before the treatment suggests they think the extra round will be successful.

The mobilization chemotherapy is composed of two drugs. The first is cyclophosphamide which is the 'C' drug from the original R-CHOP regimen. However in this case it is given at dose that is three times stronger. The other drug is etoposide which is a drug Kim hasn't received before but is used to treat Lymphoma in other parts of the world. The important thing is that the mobilization chemotherapy will also help treat the cancer so it's not like Kim will be taking a break from treatment to do the stem cell collection. There will still be drugs fighting the disease.

Waiting is so hard. Now we have to wait longer. At least the R-GDP made had a good impact on the cancer so far though. 43% is a good number.

On Friday Kim, her mom and I all went to Princess Margaret Hospital for Kim's consult concerning the stem cell transplant. We spoke with two doctors and the co-ordinating nurse and they were all very friendly and helpful. PMH seems like an amazing facility too, it's very big and shiny and stuff.

Anyway, the plan is as follows. On Tuesday Kim will get a CT scan at St. Michael's and then on Wednesday the doctors at PMH will hopefully be able to compare the results to the CT scan that was taken before the salvage chemo started. I say "hopefully," just because the timing is a bit tight. Assuming the scan is received in time, and assuming it shows that the cancer is responding well enough to the salvage chemo they will begin the preparation for the transplant that same day (Wednesday).

As I mentioned before, the transplant does not actually do anything to help cure the cancer. Rather it is a necessity in order to facilitate recovery from extremely high-dose chemotherapy given to attempt to kill the cancer all at once. The toxicity of the high-dose chemotherapy causes the patient's immune system to be completely wiped out. The transplant allows the patient to recover after that happens.

In the past, before stem cell transplants, a bone marrow transplant was done instead. This was a much more invasive procedure as the marrow had to be harvested from deep in the hip bone and a lot of marrow was needed. For the stem cell transplant, the cells are collected from the blood and so it's a lot easier.

The preparation for the collection involves a single round of chemotherapy followed by a week of daily Neupogen injections. The chemotherapy is similar in strength to the treatments Kim has already received and is meant to help mobilize the stem cells in her body (ie. get them moving about the blood stream to facilitate collection). The Neupogen helps boost the counts so that there are more cells available to collect.

If all goes well, the mobilization chemo will start Wednesday, and continue on Thursday and Friday (all as out-patient procedures). Then the Neopogen injections will start the following week. They expect that Kim might be ready to have the actual collection done as early as the week of May 30.

While all the prep work for collection is happening, Kim will also go through a whole bunch of examinations to ensure that there are no latent problems anywhere in her body. The doctors would much rather treat and resolve such issues before Kim becomes severely immuno-compromised. She'll get a physical, plus heart and lung tests and even a special dental exam (need to be careful about gum inflammation and cavities and stuff). Anything that could cause an infection later needs to be fixed first.

Once all the crazy pre-amble work is done the collection itself is pretty simple. They take blood out one arm, run it through a machine which filters out the stem cells and then put the blood back in the other arm. It can be a lengthy procedure though and Kim may have to come in more than one day to complete it.

After the collection is complete, they wait until Kim recovers enough from the mobilization chemo and then admit her to PMH as an in-patient. Then they give the extremely high-dose chemotherapy and a few days later introduce the stem cells collected earlier. Finally they keep her for at least two more weeks until she has recovered enough immune system function to go back out into the world. The hope is that it could be done by the end of June.

Again, this is all still tentative pending the results of the CT scan on Tuesday. They had us come in before the results so that we would know what to expect so that they can move quickly when they're ready.

We're pretty anxious to find out what will happen!

Kim finished up the second part of her second round of salvage chemo on Friday. It went much faster than last time and she's still feeling OK. Next Friday we have our first meeting with the people from Princess Margaret to start learning about all the stuff that will happen with the Stem Cell Transplant. The following week Kim will get a bunch of tests done to determine if the salvage chemo has been successful enough to proceed with the transplant and if not they will give her another couple rounds of chemo before testing again. All the waiting is very hard.

Thursday was Kim's 29th birthday and obviously we kept things pretty low-key. I did bring home her favourite Gandhi Roti for supper though, and we took a short walk to the local Gelateria for some delicious gelato.

Kim's home care nurse taught me how to flush her PICC line and I've been doing it successfully for about over a week. Then, this Saturday I wasn't able to flush it anymore, it was stuck. The nurse came right away and was able to flush it using special magic of some sort. On Sunday I tried again to flush it and was only able to flush one of the two lines. Since I was able to do one the nurse felt it would be OK to wait until Monday to visit again. However, when she came today she was unable to flush either line.

So I took Kim into the cancer clinic at the hospital and they told us the line was done. It's nobody's fault, it just happens sometimes. It's not the end of the world since she only has the one small treatment left this Friday which they can do by normal IV.

Anyway, everything is fine, and now Kim can take showers without worrying about getting her arm wet.

On Friday Kim received the first part of her second round of salvage chemotherapy (R-GDP). It took a lot longer than the old R-CHOP protocol, but by 6pm we were out and on our way home. Kim's been feeling mostly OK this weekend so that is nice.

This coming Friday Kim will get the second half of the treatment and then a week or so after that she will go in for a CT scan to determine how well it is all working. If there is significant enough progress she will hopefully proceed to the stem cell transplant at Princess Margaret, otherwise they will do one or two more rounds of the R-GDP and we'll see how things are after that.

The leaves are finally coming out on the tree in our front yard and that plus the warmer weather has definitely improved my mood. Soon I can put away my jacket for the summer and things will be very happy indeed.

Kim received the second part of her first round of salvage chemotherapy yesterday. It went pretty well other than taking longer than expected due to the cancer clinic being a bit swamped. The second part is just an additional dose of gemcitabine which is not as harsh as the other stuff.

Kim's home care nurse has been great so far, coming every day to flush Kim's PICC line to keep it operational. Normally they don't flush it every day, but it was giving them some trouble in the hospital so for now they're being safe. The nurse is teaching me to flush it (it's not very hard) so that she doesn't need to come every day.

Although this treatment is stronger and Kim has been feeling the side-effects more she is still doing pretty well. Last week definitely wasn't so great, but nothing like the horror stories you hear sometimes. She's developed a little bit of a cold in the past couple days, but there's no fever so there's not much to worry about. Just something she needs to wait to resolve itself.

The doctors decided today that Kim was healthy enough to be released so we're all back at home now! Yay! A home care nurse is going to come visit us regularly to help maintain Kim's PICC line and also just to monitor her for any problems.

Looks like I spoke too soon. Near the end of March Kim started having a sore back and a mild fever. We kept a close eye on things and then on March 31 her fever spiked up to 39C and her doctor had her admitted as an inpatient at the hospital. Fortunately they got the fever under control almost immediately.

The doctor decided to keep Kim in the hospital over the weekend to wait for the results of some tests and just to keep an eye on her. She was doing well on the Friday evening (April 1) so I decided it would be OK for me to go the Blue Jays home opener with a bunch of people (Kim practically pushed me out the door). I had only been at supper before the game for 45 minutes when I got a call from Kim's mom asking me to return to the hospital. The doctor had come moments after I had left and told them that the tests revealed that the chemotherapy regimen (R-CHOP) was no longer being effective at fighting the cancer. The treatments were going so well and Kim was feeling pretty good so this was disappointing news to us.

When the primary treatment regimen stops working, the cancer is considered refractory. The doctor explained that we would have to switch to a different chemotherapy regimen and also do an autologous stem cell transplant if possible. There is still a good chance that the cancer will be cured, but the path has become longer and more difficult.

A lot has happened since we got the original news. Kim has remained in the hospital, but mainly for the purpose of expediting some additional tests. A CT scan confirmed the findings of the original chest X-ray and yesterday they did another bone marrow biopsy (ouch). She also got a PICC line inserted, which is like a semi-permanent IV line. It can stay in up to six months and it can be used to both give medicine and draw blood. This means she doesn't need to be stuck with needles multiple times a day anymore.

The new chemo regimen is being done as part of a phase III clinical trial comparing two different treatments for people with refractory Diffuse Large B-Cell Lymphoma. The two treatments are R-GDP (rituximab + gemcitabine/dexamethasone/cisplatin) and R-DHAP (rituximab + dexamethasone/cytarabine/cisplatin) and both are used extensively around North America as a secondary treatment after failure of the primary. R-DHAP is the old standard while R-GDP is newer, but many places (like BC) have already moved to make R-GDP the standard. The doctors consider them to be equally effective, but many prefer R-GDP because it is a bit less harsh on the patient. The primary reason for putting Kim on the trial was to get the rituximab (common to both protocols) paid for. OHIP does not normally cover rituximab for this usage but the trial picks up the tab (which is great since it's a fantastically expensive drug -- think tens of thousands of dollars).

Kim was randomly chosen to get R-GDP (the newer one) and she was given the first dose today. A week from now they give a second dose of just the gemcitabine, and then two weeks after that she repeats this process. It's expected that she will feel the side effects more with this regimen than with R-CHOP as it is higher dose and harsher. She was already feeling sick to her stomach this evening so it looks like the expectations were justified. She'll also have to take an injection each round to help boost her white blood cell count which will be made very low by the treatment.

After the R-GDP protocol is complete, Kim will be tested again. If the cancer responds well to the treatments then she will undergo an Autologous Stem Cell Transplant at Princess Margaret Hospital. This is similar to a bone marrow transplant, but it uses her own stem cells (so no chance of rejection) and it is much less invasive. It is still very serious though and would likely require an extended hospital stay (up to a month).

Finally, after the transplant, Kim will enter phase two of the study and be randomized to one of two test groups. One group continues to get maintenance rituximab treatments every two months for a year and the other group is merely observed closely (ie. they are a control group). There is some small evidence that maintenance rituximab treatments help prevent relapse, but nothing conclusive. This trial will help determine if there is any justification in such treatments.

In addition to all the information and tests and procedures, Kim was also kicked out of her fancy private room earlier in the week when a sicker patient needed it (Kim has actually been totally healthy since the fever left). Her new room was a semi-private which she shared with someone who appeared to be in the end stages of her own fight with cancer (in the bad way...she couldn't talk or move much on her own). Although it felt wrong to feel this way, it was really hard on for Kim to share that room. It was like a constant reminder of the potential future and it was hard to not let that get to you after a couple days. Again we feel bad to complain when Kim is currently in a much better state but it still shook us to the core.

Kim was moved to a new private room for her treatment and will remain there until she is discharged. If she does not have too strong a reaction to today's chemo she might even get to go home this weekend!