High-Dose Timeline

[TheTippingPoint]

Hey all,

I have a question about the timeline for high dose. Greg's responding to VIP, so the plan is for high dose w/ stem cell rescue for cycles three and four. I haven't had a lot of interest in researching treatment this time (it's just too much...I hate cancer), but the timeline for treatment raised a few flags for me. So, here it goes:

1. We met the lead onc. on the stem cell team Monday. He said after this cycle we'd make a definitive decision, but all signs point to HDC. He didn't want to discuss specifics (I guess they don't want us to have any false hope), but they've scheduled his cycle 2 CT for the Friday before he'd start Cycle 3. Clearly, this wouldn't give enough time to harvest stem cells before the typical schedule where treatment stops for nothing.

2. Greg's doc said he'd be in the hospital 2-3 weeks, then off for two, then back in for 2-3 weeks.

Basically, I just need to ask: Is the timeline different for HDC? Should I just relax?

I was also a little thrown off when we asked about the oral etoposide after HDC, and the stem cell onc. said "that's a salvage option if there are still marker variations." I don't think that's how they're using the oral etop. @ IU... we have a friend in town who also went through HDC and he received oral etoposide with a full response to HDC, like others here.

I wanted to have a little knowledge to ask with more confidence next time.

Thanks.

[Fed]

While I can't comment on the HDC timeline (I'll leave that to TC Destroyer and Lorinda), I will tell you oral etoposide is the final part of HDC. It's typically a consolidation regimen that ensures the cancer is really gone if tumor markers are absent after HDC.

[starjayroman]

Jay after his HDC did not recieve oral etoposide and where he is having it done (the University of Minnesota Bone and Marrow Transplant Clinic, his doctor is one of the best in the US at what she does http://www.uofmbmt.org/about/news/c_690420.asp )they follow the IU protocol for HDC.

They had to collect stem cells from him before they could start HDC. If they were unable to they would not have done it. They said if they couldn't get stem cells from him that he would only be able to be treated with different chemotherapys when the cancer came back. We went for the initial consult on Dec 24th of last year and started stem cell mobilization in early February. It took so long to get stem cells that he didn't go through treatment until May.

He went through two cycles of VeIP (Vinblastine, Ifosfamide and Cisplatin) before he was referred to the U of M for autologous Stem Cell transplant. He was hospitalized for his VeIP treatments he was in the hospital for seven days both times and had two weeks off I think. His tumor makers had to remain gone for them to do the HDC. They were unable to collect enough stem cells to do two HDC/Stem Cell transplants so they only did one. They tried everything they could to get enough stem cells out of him to do two but it wasn't possible.

They wanted 10 million CD34's (stem cells) to do two HDC/Stem cell transplants. They lowered their expectations after two months of trying and getting none to if they got 5million they would do two. They finally got a little over 2 million and so they could only do one. They need 2 million to safely do one. They had planned on doing TICE, Jay got the TI part of it and is almost at day 100.
If you have any questions please ask me, either here or in private messages

[TC Destroyer]

Receiving Oral Etoposide is the standard procedure for standard HDC treatment. IU gives EVERYONE oral etoposide following HDC. Dr. Einhorn said this 3 month folow-up treatment increased success rate by 5%. I wanted all of the % I could get.

Realize that there will be variation in other peoples experience if they did not receive treatment at IU. I would definately ask that your medical team consult with IU's Bone Marrow transplant department or Dr. Einhorn, they are the best for a reason.

My guess is if he is responding to VIP, based on what his tumor markers are showing, they will give him a week to rest and then 4 or more days of nuepogen in order to get those stem cells in high volume. I covered my high dose experience in detail on my caringbridge, please feel free to use this as a reference tool.

My wife also has a few great outline of IU's HDC protocol:

Clicky

For consistancy

Feel free to ask any questions you may have, PM if you wish. We are all here for you and Greg.

John

[Steven]

I had my hdc x2 at IU. I don't really remember much about the time line but only took 2 tries to get enough stem cells from me ( but as I understand, this is different for everyone). I also don't remember what it was called or how long I took it (sorry, chemo brain) but I had to take a shot to help release more stem cells into my blood stream. Seems like that was for a week or two but I really don't remember. As for the etopiside, the hdc worked great for me and I still took it afterwards. I also had a teratoma so (again just guessing) maybe the etopiside is used afterwards to ensure that a different component is wiped out? Sorry for all the "don't remembers" but maybe it will give you some ideas to research.

[ryder]

My husbands HDC went just as TC Destroyer said, had the HD worked for him, he would of taken the etoposide pills following his chemo.

He finished his two rounds of TIP where they collected stem cells after each round, then once his counts were up he began HDC, he was an inpatient for about 3 weeks, we were told that this time varies from person to person, all depends on your counts. Then home for about a week, then back at it again. So I think in total my husband was an inpatient for 4 months with a few breaks in between, but he had some issues along the way. NOt sure if this helps at all.

Thinking of you and your husband!

[starjayroman]

John,
That makes me worried about if they are doing the best they can for Jay since they don't deal with TC as much as Dr. Einhorn. Sighh. It makes me wonder if he should be getting the oral etopside since you and Fed both state that Dr. Einhorn does this as standard practice. I am going to ask Dr.Burns and will put together whatever I can about him to send to Dr. Einhorn. I worry that they might not have done everything they could but there is no way of knowing.

Crystal

[TheTippingPoint]

This is all very helpful. I think I can press the issue a bit tomorrow. Starting the stem cell harvest process in two weeks seems unfavorable to me, and now I can discuss it with some knowledgeability.

I might ask about Greg's port for apheresis, neupogen, and stem cell collection happening during the next two weeks, not after the next two weeks. He will not receive a full response from VIP (his AFP is simply too high), so I don't really understand waiting...

Thanks all.

[Gerri]

Hi

I thought I'd share my timeline for the stem cell collection as we had VIP too before commencing on HDC. For us, we did the harvest in our fourth and last VIP cycle. We had 5 days of chemo and the collection commenced on Day 18 of Cycle 4. We had a 10 day break before starting HDC. The apheresis port was placed at the end of Cycle 3 so that we could use it for Cycle 4. There's an amazing number of tests that need to be done before HDC, blood, bone marrow, breathing, hearing tests, not to mention the brain MRI scan and body CT scan. We also had to find time to put the apheresis tube in. Yes, I would agree with you that all of this should get started as soon as possible.

It sounds like the oncologist wants to check tumour response before starting Cycle 3 of VIP? If the tumour volume is high, they may wish to reduce it further before giving high dose chemotherapy. I know it sounds strange. Why not "high dose" immediately to kill it? Isn't high dose supposed to be more potent than regular chemo? My impression from speaking to the doctors at our hospitals is that the goal for high dose is to normalise the tumour marker. Therefore, the lower the marker is at the start of HDC, the better. If the marker is not 'low' (however it is defined by the doctor, for instance, my doctor thinks anything below 1,000 is low enough), it suggests that the tumour is not sensitive enough from previous 'regular' chemotherapies. This is how it was explained to me.

We did the TICE protocol which is used at Sloan-Kettering. That involves 3 cycles of high dose chemotherapy but no oral etoposide.

I hope your meeting with the doctors went well!

[TC Destroyer]

I just want to note that in this case waiting two weeks to collect doesn't seem out of the ordinary. He should recover a little before trying to get some stem cells out of him.

My thoughts are they might wait one week, then start the neupogen half way through the second week. Hopefully they follow standard protocol after that.

Again, maybe suggest having them contact IU.

John

[TheTippingPoint]

Greg wasn't satisfied with the responses he received from his team of doctors, so he emailed Dr. Einhorn. We're moving on the correct schedule... HDC to start 3-6 weeks after the 2xVIP (the sooner the better, with or without response to the VIP).

Thanks all.

[TC Destroyer]

If Einhorn gives the OK, I would sleep a little better too. Make sure to encourage him to get his strength up before he starts. The stronger he is going into HDC hopefully the easier it is for him to conquer it! Use this time to get prepared. it might help to make a check list of things to bring for HDC. if you would like I can PM you a list of "must haves" that helped me.

Stay positive, find the funny.

John

[starjayroman]

They wanted to start with collection sooner with Jay but he just was not ready to go through it and put it off for a couple of weeks. Then they had a very hard time getting stem cells out of him. He went through the five day work up and had his CVC put in and they gave him shots to push the stem cells out to his blood stream. We went to apheresis for two days and he didn't collect enough to continue so they had to try cytoxan. At first we thought they were going to go to the bone marrow but they never did. He ended up getting Mozibil twice. They had never given Mozibil twice to any patient. Mozibil is a new drug that helps the nuepegen shots by making the body let go of stem cells. Mozibil shots are like 10,000 dollars a shot. He was supposed to get them for five days along with the nuepegen, but one day they didn't have any in the twin cities. They had to get it from the Mayo Clinic in Rochester. We were so mad, how could they make such a mistake. How could they not know he needed it because he had already got the shot for three days. We were lucky that he was still able to collect just enough for one stem cell transplant but it took a long time. We were going to that clinic every day for months. They had to restage him because it took so long. I just didn't get that but if his body wasn't going to cooperate what else could they do. The good part is he has been an example of the right thing to do since. The people at the clinic didn't are amazed I think because of all the problems they had before. He had to have his CVC replaced. I still think that might have affected the ability to collect stem cells even though they said it didn't because it was up in a vein that it shouldn't have been. They could put heperan etc in and were able to draw enough blood but it was difficult and when he went to apheresis he had to lay still.

As John states stay positive, find the funny. It helps. No matter what.

[TheTippingPoint]

VIP's working (AFP markers have decreased rather significantly, but still nowhere near normal...still, onc. is "very happy" with the marker progress) so we've been officially transferred to the stem cell team for our carboplatin/etoposide adventure. Stem cell harvest starts today or tomorrow.

Here we go...

[Les' Mom]

Sweets... this is just one step in the journey to kill cancer from Greg's body.

I will think about you tomorrow....

Love,
Pam

[Jay68442]

Boy how things have changed since I had HDC and transplant 20+ years ago. All I can say is that it works. Best of luck.
LiveStrong
Jason

[jram303]

I am very happy to hear that gregs numbers are falling. You both are in my thoughts and prayers.

[TheTippingPoint]

Thanks all.

Pam- I think of you often. Are you still teaching? My mom's still trucking (on year 34, I believe!)

Jay- Thanks for sticking around after 20 years to remind us that it does work and that we should remember to be thankful for medical advances

JRam- Glad you're all clear these days! Thank you for the kind words!

[Fed]

If the markers are going down, then the VIP is doing its job. It sounds like Greg is on the right track. Keep at it!

[TheTippingPoint]

I'm a little frustrated. We're a week post-appointment and NOTHING has started in regards to HDC. Nothing. We're calling every other day and every other day, we're told they're still working out insurance issues.

I understand some healing time is necessary (G's hemoglobin was down to 3 (10 being low, 8 being the point where transfusion is recommended) after his second round of VIP so his onc. wanted this to rebound on its own instead of transfusing), but I'm fearful the stem cell team doesn't realize the kind of aggressive cells with which they're dealing.

Dr. Einhorn said 3-6 weeks after VIP, the sooner the better, but we're looking at 4 weeks best cake scenario, with G's AFP still around 9k (possibly lower at this point, but they're not doing blood draws, so we have no idea).

I just don't know what to do...

[monika]

I had the same problem with my brother, it is a expensive so they have to do a lot of test before they can start HDC, I totally understated your frustration I've been there. We called them everyday once we realized things were being held up, we talked to his Dr, his transplant nurse, our insurance company... After about two days of calling they came through. My brother started HDC two and a half weeks after finishing regular chemo, and 6 days after stem cell collection.

Did they tell you what the issue is? We've been told his paper work got stuck in some understaffed office. I think each of our family members called that office everyday since they told us that I had his Dr call too. It might of been overdoing it, but I rather have done that then underdone it. I definitely felt that his Dr didn't feel the same type of urgency as we did...which was frustrating. Is there a transplant nurse you are working with? Ours was really helpful and easy to work with.

[TheTippingPoint]

Monika,

Thanks. As frustrating as it is for all, it is also comforting to hear that the experiences are similar. We haven't been told the nature of the hold-up. I'll see if G can press the issue and perhaps we can call insurance (he has not-for-profit "cooperative" health insurance, which has been great despite having to go to their specific clinic for blood draws, CT scans, etc) and find out how we can speed things up.

We've talked with the nurse, who has been responsive, but doesn't seem like there's much she can do either right now. We'll call again today...

[Les' Mom]

Hi sweetie,,

I am so sorry about the hold up. Be a squeaky wheel. If you need a momma tiger to get ahold of them let me know!!!

Yes, I am still teaching. I would not have made it through the last two years without my "kids" at school. The kids start tomorrow. I am a little concerned because I have 25 kids right now. That is a lot of 1st graders. They always wanna wait and see what happens at day 20. I just know I am going to be TIRED tomorrow and I am NOT cooking dinner!

Much love,
Pam

[TheTippingPoint]

Just thought I'd drop in for an update.

Greg finished stem cell collection and his battery of tests yesterday.

After collecting only 1.2 million cells on day 1, the gave him Mozobil and he set the hospital record for highest white count on record. Everyone has to be the best at something, huh?

The harvested over 4 million yesterday (target was 3 and they only need 4), so he's going into HDC with a surplus...

He's probably going to start chemo Monday, in-patient. We weren't given any choice on the in- vs. out-patient. Doctor said he'd be in the hospital 20+ days each cycle.

Here we go.

[Karen]

congrats on the successful stem cell harvest.....go to battle Greg, and kick cancer's ass.

[Smartie]

It's great to hear that things are going well so far. I'm sure the success of the harvest is a sign of future successes!

[buster]

Go get them guys good luck. You guys will be looking past this in no time!

[Fed]

Awesome about the autologous collection. Now kick cancer's butt!!

[Mazay]

Its great to hear about the good collection numbers!

Good luck on Monday with the start of the HDC!

[ally30736]

Just one more fan in your cheering section. Get this started, and get on with the rest of your long happy lives together. Greg's stupid cancer needs to get a clue that it is not welcome in your lives.

Ally