The Leukemia & Lymphoma Society Community : Unanswered Threads - My Child Has Cancer

can leukemia advance to myeloma?

communityreply@lls.org — Sat, 17 Oct 2009 04:41:36 GMT

Has anyone heard if low platlets over a month with Dx of ALL can lead to multiple myeloma??? I am so afraid to have beat leukemia or at least a remission and then show multiple myeloma, I noticed it with a bone marrow pathology report today and of course the weekend and unable to call onc., thanks for any advice

Type 1 Diabetes and Leukemia

communityreply@lls.org — Wed, 14 Oct 2009 20:05:32 GMT

My 11 year old daughter was diagnosed with type 1 diabetes in April 2007 and Leukemia (ALL) May 2008. She is in LTM and doing well except for when she goes on her pulses of steroids (Dex 4 mgs 2 times a day). Her blood sugars are crazy high. We have gotten them under control but it is with using extremely high amounts of insulin and every month she needs more and more insulin to get her blood sugars down. We still have 10 months to go. Is anyone else dealing with this issue and how are you handling it?

Thanks,

Mindy

Steroid Rage!

communityreply@lls.org — Wed, 14 Oct 2009 18:00:44 GMT

My 11 year old daughter has to stay at home when she has her monthly pulses of steroids. She is so agitated and feels so bad that she can't even attend school during that period. She is on 4 mg of Dex 2 times a day for 5 days. The new Dr. at clinic seemed surprised at her reaction to the steroids. She is on LTM. She was diagnosed May 2008 with Leukemia (ALL). Does anyone else have a child who has a similar reaction to the steroids? After about 24 hours off she goes back to her awesome self and doesn't remember half the things she did or said while on the steroids. I wish I couldn't remember it, too!

Thanks,

Mindy

Weight gain in two weeks!

communityreply@lls.org — Thu, 08 Oct 2009 19:20:38 GMT

Hi All,

My daughter has been in LTM since Dec'08. Two weeks ago, she had to go into ER because of a viral infection (she had a fever of 102.6degF). There we found out that she had gained 7 pounds in 2 weeks - two weeks before going into the ER, her weight was 84 pounds and then in the ER she weighed 91 pounds. This was consistent when she went to the clinic next day (so it is not a question of the ER nurse making a mistake). She is 8 1/2 yrs old; however that is almost a 8-9% increase in weight. When we talked to our case manager, we got a class on how weight becomes an issue with our kids, how we need to remain active and how we should be controlling their diet. While we get that, it is not that she has been eating junk food. She has genuinely been hungry and has been taking extra helpings during regular meals. And this while she is not on the Dex pulse. She has also being doing swimming once a week and do other physical activities. Has anybody else seen such drastic increase in weight such as bloatedned due to hypothyroid)? Any ideas of what is causing her to feel so hungry. As you can see, we are concerned.....

Thanks,

Puneet (Stuti's dad)

www.caringbridge.org/visit/stuti

Common Variable Immunodeficiency (CVID) and Leukemia?

communityreply@lls.org — Mon, 21 Sep 2009 23:13:46 GMT

Hi Everyone. I am wondering if any of you have heard of CVID before? Tom finished chemo last October, but his IgG level has consistently been low and he's getting IgG infusions every 4 weeks now. The doctors seem to think Tom had this since birth, since it seems to be an X-linked Chromosome abnormality. At first they were thinking that the chemo had destroyed his immune system. If you google CVID there are several articles about this. I was just wondering if there are any other children out there with this. After reading several articles, the symptoms are among a host of other things, arthritis, gastro problems, skin problems, frequent infections, and a higher risk for Lymphoma (I'm assuming Leukemia fits in there somewhere). Thanks. Connie

Processed Meat Link to Cancer

communityreply@lls.org — Sat, 29 Aug 2009 17:06:51 GMT

http://www.silobreaker.com/processed-meat-cancer-link-5_2262534461671342126

I was feeling pretty good about this not being true when djlawman posted a link dispelling it, until I saw the story on the news last night. Now I'm starting to think there is some truth to it and we are going to have to change our eating habits, although there is no mention of a link directly to Leukemia.

Thoughts?

Question about meds and counts in LTM

communityreply@lls.org — Fri, 03 Jul 2009 00:11:35 GMT

Madelyn started LTM in January. In April, she became very sick with a sinus infection that had us in the hospital twice and had her off all chemo meds for about 3 or 4 weeks which of course made me nervous. Once she started back on the meds, it was at 50% of their recommended dose. Recently she was increased to 75% which increases her 6mp from a half a pill every night to a whole pill 3 times a week and an additional methoxtraxate pill. Since the increase to 75% a few weeks back her ANC has gone from 1600 to 1200 to 900 and is now at 700. I think she is sensitive to the 6mp when it comes to her ANC. My question is have you all expercienced this kind of drop and should 50% be her 100%? The way things have gone for her so far is once her counts get too low usually below 500 she will run a fever and we end up in the hospital. I plan on meeting with her doctor next week when she is scheduled for a procedure so at this point I was just looking for any similar stories. We talked to the nurse today and she said she would recommended her staying at the 75% dose but it is our decision and it is hard to find the exact amount of chemo for each child. I want her to get enough chemo but not so much that she ends up back in the hospital and then off all meds until her counts recover. I really appreciate any stories or insight you all may have. Thanks,

Mary

Overseas travel insurance during maintenance

communityreply@lls.org — Tue, 16 Jun 2009 16:28:06 GMT

OK, I know people get travel medical insurance during maintenance for ALL and go to Europe, can anyone tell me their experience getting coverage?

I just got turned down and I wonder what I am doing wrong. My son has had one medication increase a month ago, during to an increase in his weight.

International travel insurance -for Canadians

communityreply@lls.org — Wed, 03 Jun 2009 19:22:46 GMT

Has anyone purchased travel insurance while in maintenance?

My son is three months into maintenance, but when I phoned Travelguard they said that any change in medication during the three months previous disqualifies him. My son had one of his pills change last month because his weight has increased.

I was looking into this on the old forum and someone also brought up the question of travel immunizations, which I haven't looked into.

Have you ever seen poiklocytosis or anicytosis on blood work??

communityreply@lls.org — Thu, 14 May 2009 03:04:27 GMT

We are in the middle of DI. Lily received her 3rd dose of Dox today along with Vin and she started back on DEX. I got our blood results at clinic however we have online access to the results and I always like to look at night since they rerun stuff and often post updated results. Mind you they aren't ever different really, but I'm a little compulsive. So tonight they had posted on the smear that they found poiklocytosis +1 and anicytosis +1. Does anyone know what that means? I found that they are irregular red blood cells, but can't figure out if it is important or not or caused by chemo. I'm more curious then anything else. I assume if it was bad they would call. However it does make me more curious since I looked back and around diagnosis it notes that too. Just curious if anyone had seen this or knew more.

THanks Larisa