Sigh. I think one of the tough things about this whole adventure is that it is so unpredictable. After reading lots of stories on this board, I can see that different kids can have very different experiences on the same protocol. I was told that induction was the hardest. In some ways, it was true. We had a tough induction and there were times I was afraid my son wouldn't make it through the night. I didn't have any of those awful nights in consolidation, but we did have uncontrollable nausea, dehydration, our first hospitalization for a suspected infection, our first transfusions, significant hair loss and our first allergic reaction. I've heard of other kids who sail through consolidation with no problem and even get back to school. I'm happy for them, and a bit jealous. I hope you sail through!
Consolidation for Gabbie was typical I guess. She didn't have any super hard reactions, but she had normal ones that we could control with other meds. Nausea,headaches, leg pains as well as hair thinning, exhaustion, appetite issues. She went through radiation during the second month of consolidation....which was caused more severe nausea and diarrhea as well as just pure exhaustion. No admits....although we did hydration via port at home for about 4 days. Blood transfusions too....Gabbie got one each month.....has had one each month but one since diagnosis, I am expecting her to need another one in a week or so now as we move to the end of consolidation.
The hardest part of it might have been more of the emotional impact. The shock has worn off and the realization sets in. Fortunately for us, I am a SAHM so I was able to take onher care full time, but juggling our other three kids while my husband kept our business afloat, was/is hard. We went through consolidation during the busiest part of the year too....4 birthdays, Thanksgiving and Christmas. I'm not sure I've ever been so tired in my life.
Reading about those drugs, learning about the possibliities, and risks is daunting.
I hope things go as smoothly for you as they possibily can.
DD's consolidation spanned parts of Aug/Sept/Oct '09. Just to explain "easy" and 'hard," here's what happened. During induction, she was in patient overnight for port placement, and the first chemo doses, about 6 days. The doc's were concerned about tumor lysis syndrome (she had v. large lymph glands in neck and trunk), but her kidneys seemed to handle it. She gained weight (steroids, massive amounts of potatoes), and had a few bouts of nausea. About half her hair came out at about the 4th week. We took her out (church), she kept riding her bike (she had done bike races with her dad and friends and was quite fit). This was easier than the doc's and we thought it would be. For consolidation, DD had very low energy. Her counts (RBC, platelets, WBC) dropped and she had transfusions on several (5?) occasions. She became nauseous with the chemo. She was in the hospital twice, once for dehydration (could not keep fluids down), and once for swine flu (which was not as bad as the dehydration). She also had radiation (12 Gy in 8 doses) during the first two weeks. The doctors had been talking to us about school, and how to judge when to send DD to school. On that basis, we expected that there would be some not-so-good days, but that much of the time, she would be able to participate, and we had a plan for trying to do about half a schedule. It turned out that she could not do this, and ended up staying home for most of the Fall semester. Sometimes it would be hard for her to climb the stairs to her room. This for us was hard.
It turns out that DD has a sensitivity for 6-MP, which they did not expect would be as significant as it turned out to be (she's heterozygous for the gene that codes for the enzyme that metabolizes it), Bactrim seems also to affect her WBC, to keep them down, and she was delayed into IM because of low counts. She now takes a different antibiotic.
So, the short answer is that for her, consolidation was harder than induction. However, our experience may not have been typical, and we have since worked out some of the problems. During the first week of treatment, I would guess your son would have had the lab test for the 6-mp metabolism activity. Since DD did not come back as missing the enzyme, they did not discuss this result at the time.
This is where the chorus "every kid is different" come it, which sounds awful because we all want to know what we can do to make it better for our kid.
What would I do differently with 20/20 hindsight? Push for more hydration and more thought on the nausea meds (zofran was not that effective). And get the protocol so I could review the causes for extended low WBC. All the best-
I remember that when my Megan entered Consolidation, I came to the boards looking for answers as to what we could expect over the next couple of months. The shock of diagnosis was wearing off and I knew she/we were facing a long road ahead. As you will see from reading the boards every child is different but here are a few things I learned from the boards and doing a lot of my own research.
Consolidation for the T-cell protocol is harder than for the low and intermediate risk B-cell protocol. So you may see the B cell kids do a little better during this phase as the parents usually talk about how DI was the worse. For the T-cell AALL0434 study children their consolidation includes the addition of cyclophosphamide, AraC and Peg-Aspargase. These chemo agents are very intense and cause pretty severe nausea, vomiting and usually severe neutropenia. I only tell you the difference as our clinic (mainly the social workers and some of the nurses) were "surprised" that she was so sick as "most" of the kids went to school at least some of the time. After I "fretted" about this, I did some questioning and research and found that the majority of the T-cell children during consolidation did not go to school. Megan (age 13 at the time) made it through Induction okish but when she started Consolidation she had a lot of nausea and vomiting. In fact as we progressed it was daily vomiting. We went through Zofran and Kytril without much relief until finally she tried Emend! It was great as she stopped vomiting everyday and it helped some with the nausea. The only downside was that it more expensive but I felt that it kept her out of the hospital for dehydration.
During Consolidation I had a hard time getting her to eat anything and it was this phase where she lost the most weight. Nothing tasted good and anything she got down made her stomach hurt. At one of her three hospitalizations during Consolidation, we had a dietary consult (FYI she was in the hospital for fever and neutropenia). We ruled out fresh fruits and vegetables ( I laughed at the dietician as her ANC was only 16 ) and then explained to her that Megan wouldn't do anything that tasted sweet (tastebuds were shot). This knocked out things like Pediasure and Boost. We finally found something called Benecalorie (I had to order it on-line). The 1.5 ounces of mostly non-tasting liquid contained 330 calories and 7g of protein. It could be then be mixed with anything solid or a thick liquid. At the time Megan would eat some salty mashed potatoes so I mixed it with that. It really helped as I could at least get a few calories in her along with protein. She lost a lot of muscle during this time as she had been a three sport athlete and had been in great shape. Megan also lost all of her hair during the first couple of weeks and went to school only sporadically during the first month of Consolidation and not at all during the second month.
My advice for Consolidation is just take it day to day. Don't expect your child to be able to go to school and continue the normal activities. If she /he is able too do things that is great but I think we really started to grieve the lost of our previous "normal" rountine of going and doing everything. A good day became: Will she sit up? Will she talk? Will I see a smile or a maybe a laugh. If she got off the couch/bed and walked a little around the house, I considered it a great day. For Megan, consolidation was probably the worse phase even though she had the High-dose Methotrexate (ARM C) IM (had some decent weeks between the hospitalizations) and even DI. After dreading that phase with the end being the cranial radiation those phases didn't go as bad as I had anticipated.
Hopefully your child will not have significant side effects. The thoughts you should have in your head is that there will be better days ahead and your child will improve and life will get better even as you take things one day at a time. Megan is now three months from finishing treatment and LTM has seen Megan return to school full-time and participating in two of her three sports. She also helped direct a school play and placed second in several speech meets this winter. I have been amazed at her resiliency and her ability to live life to the fullest despite still being on chemotherapy. LTM is not a return to "normal" but you will have many more good days than bad. Just keep remembering that you are saving your child's life.
I wanted to reply first to Nicole about waiting for the MRD results. Speaking from experience that no matter what the results are....and even if the MRD comes back and they change your child to high risk... you will be alright. My husband and I left the clinic with Megan on Day 29 with the great news that they saw no blasts (0%) in her bone marrow. The doctor was so sure she was going to be intermediate risk that they sent home and even discussed with us the study paperwork for the intermediate risk protocol and then told us that in approximately three days that the MRD results would be in and then we could put her in the study if that is what we decided. So we read and discussed the two different protocols had made up our mind that we would be ok with idea of the experimental study protocol and then... my husband gets a call at home from our oncologist. He was very surprised but her MRD was 1.2%. She was considered high risk! So I had a good cry (at work) and then we received the new protocol to look at with the four options (included Nelarabine). It threw us for quite a loop but we got through it and we just had to develop a new plan. In the end Megan ended up randomized to ARM C (HDMTX) which was the experimental arm that was also for the intermediate risk so she didn't received the Nelarabine.
Although it sounds like your hospital doesn't participate in the experimental study they will tailor your child's treatment protocol to whatever risk category he is in. That is why they do the MRD so they can give your child the best chance at survival. I truly think one of the worse things we experienced in those early days is the lost of control of our lives and the fear of not knowing what's coming. You will have a plan soon and that helps (at least a little).
Our experience with the HDMTX was mixed. Megan had a rough consolidation as I posted earlier (worse than induction or even DI) so we were actually delayed for three weeks as she was severely neutropenic and was in the hospital for 3-4 days with fever prior to beginning IM. She was very weakened and had lost weight and muscle mass by that time and had been given a lot of antibiotics during the previous two months (3 admits for Fever and Neutropenia during consolidation). It turned out later that she has a TPMT partial enzyme deficiency and doesn't break down the 6MP as usually expected.
So when she began the 24 hour HDMTX infusion and IT treatment she was very "puny". As the infusion was going in she slept and slept and slept which was very unusual for her. After 24 hours they start the leucovorin rescue and IV fluids at a high rate between 180 to 200 cc/hr to help flush the MTX out of her system. Megan started going to the bathroom a lot but also started having diarrhea. She had developed a C. difficile infection from the prior antibiotics and neutropenia. Of her four treatments this one took the longest for her level to come down to normal. We finally went home on different antibiotics and with her still being very weak and not wanting to eat or drink much. Nine days after the initial infusion and IT MTX, Megan had her first and only neurologic event. She had slurred speech and started feeling like she couldn't swallow then she started having uncontrolled movements. She would try to move her arms but they would flail and she couldn't control the movements. We rushed her to the ER as we were afraid she was having a stroke. They of course did a major work-up with a head CT, brain MRI and an EEG. Thankfully all were negative and by morning ( less than 24 hours) she was back to normal. We were so thankful.
Now what caused the neurologic event? We had multiple oncologist talk to us about what they thought it could be from but over the previous few weeks, Megan had had a lot of different medications. One oncologist thought it could be the PEG shots (the PEG can cause small clots and be in your system for 6-7 weeks. One oncologist thought it could have been all the antibiotics combined with the different anti-nausea meds ( she had had Vanc, unasyn, zofran, kytril and then flagyl and I am probably missing more). She was also very anemic (Hgb was down to 7 so they transfused) and combined with the C.Difficile she was dehydrated. And finally there is a strong possibility that it was the combination of the HDMTX, the IT MTX and the C.diff/dehydration/other medications. If you read the study (AALL0434) literature it says that in the rare but serious side effects that the methotrexate can cause temporary damage to the brain such that you can experience difficulty speaking or forming words and temporary loss of function of the body. The literature also says many acute events are temporally related to the administration of intrathecal therapy and it commonly occurs nine to eleven days after the IT adminstration. Megan's event happened nine days after the infusions. She had the perfect storm to cause her event and it may well have been the IT administration and not the IV methotrexate so it could have happened with either the Capizzi or the HDMTX.
Now that I have unfortunately scared you about the HDMTX, I can tell you she basically breezed through the next three admissions. After she recovered from the C.diff and the "event" she started eating and drinking better and although the infusions made her tired and she didn't get much sleep as she went to the bathroom frequently she seem to tolerate it very well and the weeks between the infusions were the best of the nine months. Megan even cleared the HDMTX on one of the hospitalization so fast that we got to go home a day earlier (usually in hsp from Monday to Friday).
Would I have her do this again? Yes. Although the "event" was one of the scariest times of my life she had had a lot of medication and she did so well with the rest of the infusions. Also there is new data out now that the HDMTX has increased the survival rates in High risk B-cell children and they are changing the protocol for those children. The data is still not completed for T-cell children but it is something to consider. There are a lot of people on these boards talking about the new recommendations.
Hope this helps some and doesn't scare you but I always wanted to know what others experiences and then to know that the children recover. Megan (so far and she is now two months from OT) has had no lasting neurololgic side effects. She is still doing great in school and is living life to the fullest (in between monthly Vincristine and Prednisone).
How is your son's consolidation going? The ARA-C gave Weston a headache the first round, which may have been due to his low hemaglobin, requiring his first transfusion of packed red cells. The second round of ARA-C really wiped out his counts again, but he was very asymptomatic this go around. He required red cells and platelets and then had an anaphylactic rxn to the platelets. His ANC dropped to 0 for awhile and he developed a candida infection/overgrowth in his esophagus which was EXTREMELY painful for him. I was terrified he was relapsing due to the chest pain. He started taking the magic mouthwash (mylanta, benadryl, and nystatin) swallowing 1tsp up to 4 x's a day. It helped immediately and he didn't spend any time inpatient. Other than that his start date for IM was delayed for a week or two due to the low ANC but he did fine.
Fortunately, not too bad. He did get headaches from Ara-c. Sometimes, a nap helped, and at other times, a tylenol helped. Fluid also helped. We do glutamine and peridex twice, daily. That seems to have helped with the mouth sores.
Thus far, one HGB transfusion per week. Also got one round of platelets - real low right now. He has vomitted on days when he did not take chemo. Normal?
Our son just became neutropenic. I guess his counts are heading much lower as we have a few weeks left in Consolidation. We are getting nervous about the infection risks.
I hope Weston is alright now. It pains to hear kids getting adverse reactions from drugs / treatments.
We were a bit worried our son seems to be not too overly affected by chemo. Hopefully, the dosages are strong enough.
It's funny you say that, because Gavin is the same way. I keep asking myself did this kid really have chemo today? We started Consolidation on Monday had the cyclophosphamide (sp?) and 4 doses of ARA-C and he still has not stopped bouncing off the walls. We also started the MP6 at home. All of which has been pretty uneventful. The only noticable difference is Gav has started taking naps again, which he stopped at 2. He really does not eat much at all now. He had some mouth sores during induction but they went away after 2 days. I am so relieved he is off the steroids, because that seems to be the really hard one for him. He could not stay awake hardly at all during induction, had lots of tummy aches and was very cranky. We will see how counts are next week.
I know we have discussed before which arm Gavin is on and they finally told us on Monday when we started Consolidation that we are on arm C. They explained the roadmap and gave us the plan for the rest of treatment. We have the HDMTX and radiation in the fall. I asked about the radiation and the different routes for the MTX and they told us in recent months, new research is showing a higher success rate for children at the intermediate risk with some CNS involvement and negative MRD following the HDMTX route. I know the radiation thing has also come up before and although it makes me nervous a) the chance of relapse makes me even more nervous b) I have nothing but the utmost faith in this team of doctors. So hopefully we make the right decision.
I think one of the things that really scares me is that things have gone so smoothly overall. I see some of the other kids we are slowly getting to know and I can't help but wonder when is the ball going to drop. But, for now I guess we enjoy the fact that he reacts pretty well to treatment and know that even though he has limited side effects the chemo must be working to have gotten the negative MRD. I am a little nervous about IM when we were told we will be hospitalized 2-5 days every other week for 2 months for the HDMTX. That will make for an interesting summer.
Good luck ending out consolidation. I'm glad to hear you are nearing the end!
Sounds like you are just a couple of weeks ahead of us. We have our day 28 spinal and bone marrow this coming Thursday. I am super nervous about the MRD results. Then, we begin consolidation. We are on AALL0434 also, and I find it interesting that most people are having radiation during consolidation. Our doctor told us we would have radiation in 6 months, which I think if everything goes according to the ideal plan would be DI. It is also the week my baby is due, so that should be an interesting time for us. I am glad you posted this, because I was under the impression that consolidation was one of the easier phases. We sit down with the oncs after we get the MRD results to go over what's next. I am not looking forward to more peg shots, not because he had a reaction, but because he is only 4 and I hate holding him down while they inflict pain on him. It makes me so sad. Induction went relatively smooth for him, how did it go for you?
My daughter recieved radiation during consolidation....she followed the Capizzi method. From what I understand, kids that follow the capizzi method recieve radiation in consolidation, kids who follow HDMTX method, recieve radiation at the end of DI.
From other places I've read, though, I think radiatio is held ,sometimes due to age of patient.
I recently read that radiation given before HDMTX can ircrease risk or neurotoxicity.
As Mary said, consolidation for TCell kids is longer tougher then BCell patients. DI repeats induction drugs, and one month of Consolidation drugs.
I would be surprised to hear an ONC say that its easier then induction, for us, it was more of the same. IM was easier, in that between treatments....you get kinda a break, and we had days were Gabbie actually didn't feel sick....it was the first time since diagnosis that we had days were she was more herself.
Our son is 10 and he was diagnosed a bit more than a month ago. Here is the AALL0434 overview: http://www.cancer.gov/clinicaltrials/search/view?cdrid=514500&version=healthprofessional
If you are in the study, you will get randomized and depending on which "arm" you are randomized to, you will get either CMTX or HDMTX, which in turn will dictate when you get radiation. There may be other factors that dictate when you get radiation beyond what's in the overview.
Induction went fairly alright for us. We got a very rough start, but then things started to go better.
The first PEG shot (one in each leg) worried us greatly too. Well, any chemo worries us greatly. Our son pancreas tests (AMYLASE, LIPASE) was a good bit higher than the normal range, so we waited one day and the values dropped (still higher than normal, but lower), and that's when he took his first shot -- the last day in a 3-day window (per ALL0434). I have no idea if the wait actually helped with anything, but I figure that could never hurt to get values more in range.
About the "holding down", do you have a "Child Life" person at your Hospital? Our Child Life nurse was of great help for our son. She explained all procedures and necessary treatments (like PEG shots) for our son and how it will be done, and so on.
We were very very worried too about our MRD too. I hope and will pray fo your MRD to be great.
Thanks for the information on the two paths that can be taken. I'm not totally sure I understand what you are saying. Do you know any more about the difference between HDMTX and Capizzi. When you say radiation before HDMTX can cause more neurotoxicity what do you mean before? Could that be why they are waiting with Gavin, because he just turned 4 and they wait until after he finishes DI? I understand if you don't have these answers. I tried googling it and got even more confused. I must of been wrong to assume that all kids on 0434 do the same things. I already wrote it in my notebook to ask the doctor on Thursday.
Whether your child has cranial radiation (CRT) at the end of Consolidation or the end of DI depends on which ARM of the study protocol he/she is randomized (the computer picks) After the results of the MRD at Day 29 your child will be determined to be low-risk, intermediate risk or high risk (for relapse). The doctors should give you more information after the bone marrow biopsy. They will give you the option of staying on the study and if you agree they input your child's data and the COG "computer" will place your child in a study ARM. For the low and intermediate risk there are two pathways. ARM A is the escalating dosages of methotrexate during IM with CRT at the end of Consolidation. ARM C is the high-dose methotrexate where your child is hospitalized four times over the eight weeks and given a 24 hour infusion of high dose methotrexate. They must stay in the hospital receiving fluids and leukovorin (IV or pills) until the level of methotrexate in their blood is safe and then they can be released.
My child had the HDMTX and she was admitted on Monday and then released either Thursday afternoon (once) or Friday (3x). The cranial radiation is then given at the end of DI. The reason is that if the HDMTX is given after the CRT there is more of a risk for neurotoxicity.
If he/she is determined to high risk then there are an additional two ARM'S B and D which add the experimental drug Nelarabine.
Hope this helps. The docs will give you more info soon. One of your big decisions will be whether to stay on study or just follow the standard protocol (ARM A). This was one of the most stressful times for us but it will help some when you get a plan of treatment.
This is where I'm confused, because we weren't given any choices. We are not a hospital that does the study. We are part of an excellent medical facility (Childen's Memorial Hospital near Chicago) with terrific doctors. We were told 2 weeks ago in the middle of induction that radiation will be done in 6 months. They told us at the beginning they follow one protocol and just adjust as necessary per child. However, it seems that standard is radiation in consolidation and I know ours is not. Gavin was assigned to intermediate risk category already pending the results of MRD. He had CNS involvement from the get go. It was just a couple of cells and they even sent it out for a second opinion, because they weren't sure the cells were leukemia cells. Unfortunately even though it was 2 cells they saw, they have to upgrade him to intermediate risk. We are VERY anxious and nervous about Thursday's MRD results. Well, the procedure is Thurs., but I think the results take a few days to get back. This is all still so overwhelming for us. I wish that someone could just say well this is the phase that you're going into and this is what is going to happen and this is how he will react. I know that's not what happens. Thanks for all of the information, I appreciate everything I can get.
You DRs can help you with the details of the treatment plan they have for your son, but if it is based on AALL0434, here is the link: http://www.cancer.gov/clinicaltrials/search/view?cdrid=514500&version=healthprofessional
I'm sure you Drs have done this, but it is worthwhile to ask if they have done the TPMT test to determine how well your son will agree with "6PM" which is a drug for Consolidation and a mainstay during Long Term Maintenance.
Thank you Cathy from this Kathy....I'm sorry I didn't explain myself very well Nicole!
Nicole, Have they explained what kind of treatment your son will recieve during IM? If not, I'm guessing they would....our ONC's we discussed it great detail Gabbie's treatment plan with her ONC after she completed Induction....your almost there....right? The ONC's need to see how they respond to induction, and what they're MRD results are before finalizing. Gabbie was high risk at diagnosis, and catergorized intermediate risk after induction due to her response....removing us from nelarabine doses. It would sound like your son is headed to a similar path as our daughter. Hang in there!!
I think you are right. I think we are waiting for the MRD results. We go Thursday and they told us results can take up to 3 days. Talk about torture. The doctor said he would sit down with us then to discuss our next steps. I think they try not to keep you to far into the future and try to live one step at a time. Unfortunately, or sometimes fortunately the internet is there to move us beyond what we may or may not be ready to absorb yet. I try to be positve and think that things will go as smoothly as possible. So far they have run relatively well. But, I think if I don't live somewhat in reality when we do hit a bump in the road it will be even more difficult to handle. As for right now I am literally in knots waiitng for the MRD. I think about it all the time. Hopefully the fact that he achieved such a quick remission is a plus in regards to that and that he was supposed to have a day 15 bone marrow, but his day 8 was so good they decided to forego the day 15 one. Thanks again for all the advice and thanks to the original poster for being steps ahead of me and asking the questions I have or a couple days later have.