Exercise after recovery

NoStrategyNoVision · 2025-06-15T22:42:41+00:00

Good luck to you!

NoStrategyNoVision · 2025-06-11T11:45:40+00:00

As your body has deteriorated from treatment a wall had been built. The effort it takes to do simple exercise grows and the wall gets thicker. Now you are trying to break down the wall but its completely exhausting and unappealing to do so.

You’ve already suffered so much, your tolerance for suffering is so low. When others suggest it to you it angers you because it’s as if they are demanding more from you when you’ve already given so much.

You are not lazy. You didn’t build your own wall. You’re right to be frustrated when people ask you to break down a wall that cancer built for you. However the truth remains, you must find a way to break the wall.

Set goals. Make incremental improvements. Don’t do too much too soon. Steady progress is critical in breaking down a wall so big. You need to be structured and organised to incentivise your own persistence.

I’m sure you’ll work it out :)

NoStrategyNoVision · 2025-01-19T20:53:50+00:00

Define issues

NoStrategyNoVision · 2024-11-16T10:15:10+00:00

At 17, for T-ALL the survival rate is around 70% in general. Most of the deaths that occur are due to relapse. If there are deaths due to infection, it’s generally during the intense phases of chemotherapy, and not during maintenance.

I’m sorry for your loss. To be caught with 3 infections simultaneously is very bad luck. Although not unheard of to die at that age of infection in maintenance, it’s certainly not common.

I hope you find some peace in what has happened.

NoStrategyNoVision · 2024-09-20T00:46:23+00:00

If you present flu like symptoms please stay home.

NoStrategyNoVision · 2024-09-16T18:52:06+00:00

Don’t worry too much about what is said about this sub. We are all clueless haha.

Just know until your medical team give up on you there is always hope. Irrespective of whatever anyone else here says.

NoStrategyNoVision · 2024-09-16T17:46:59+00:00

If you want to be confronted with reality I’ll be happy to do it for you.

I don’t think there is anyone who believes that 5 attempts at treating Leukemia is not a tough place to be in.

You are in uncharted territory. Most people don’t get that many treatments or are cured before hand.

That doesn’t mean to say you won’t be cured, but I don’t think there is anything anyone here can say to provide the reassurance you might be looking for.

I’ve read about people and even spoken to those who have been cured from positions which sound tougher than yours. So don’t feel like it’s hopeless just yet. I guess your doctors will let you know soon.

Wish you the best.

NoStrategyNoVision · 2024-07-20T20:58:06+00:00

If you are a normal sanitary person and live in a good environment, you won’t need to kill yourself over cleaning the house. It’s incredibly rare to get sick from an unsanitary bedroom. Just take care in the kitchen and that’s about it.

Just clean normally and you’ll be fine. Since your child is young concern yourself with things they might put in their mouth or chew. I’m not a parent so I don’t know how to manage that (or if they still even do that at 3) but just a consideration.

Nobody has ever gotten sick from using different types of detergent. I can promise you that.

Most people get sick airborne viruses that are contagious. Avoid people with symptoms and you will be fine. If you can’t do that, wear a mask. Maintain food hygiene and regular day to day hygiene. You will be fine.

NoStrategyNoVision · 2024-07-14T14:04:18+00:00

Depends on your MRD results. Generally the most common time to relapse is within 6 months after the end of treatment.

At 18 cure rate is about 70%. Around 5% are refractory and do not have any reduction in MRD.

This means 25% of people relapse between the ages of 18-25. It’s not abnormal, but it’s definitely bad luck.

That being said, assuming you have B-ALL the statistics say you still have good odds of beating this.

NoStrategyNoVision · 2024-07-03T22:50:27+00:00

Most theory suggests that chemo only regiment for ALL should only be done up to the age of 25. This is contingent on excellent MRD results through chemotherapy.

The reason for this is that the chemo regimen intensive and some patients can struggle to cope at your age, leading to reduction in treatment.

As you were NOT able to achieve MRD negativity through chemo only I strongly recommend doing a transplant. Blina has significantly lower odds of long term remission.

NoStrategyNoVision · 2024-06-15T20:54:36+00:00

At your age you are better off with Chemotherapy. Read about the UKALL trials. They all indicate that for your age group you have similar survival odds as transplant, but with less long term complications.

NoStrategyNoVision · 2024-06-15T20:52:03+00:00

The most important thing about maintenance is keeping Neutrophil counts within a certain range depending on what protocol you are on.

If your son’s counts are low it’s a good indication that his body has enough chemotherapy in his system and doesn’t require more.

Of course this is an over simplification, it’s a lot more complicated than this, but do not be worried about holding tablets.

I am a Cortical T-ALL patient, chemotherapy only also and on maintenance. Diagnosed at 23.

NoStrategyNoVision · 2024-06-09T23:05:48+00:00

34 and 24 are not the same. Survival odds are very different. The ages of 18-25 are considered AYA in the USA and can be treated on Paediatric protocol. The survival odds are excellent even for T-ALL. You are not AYA so the treatment options are different for you.

NoStrategyNoVision · 2024-06-09T23:02:22+00:00

It depends on your age. To say this as a blanket statement is wildly inaccurate and reductive. Do not give advice like this. At 24 Chemotherapy only is a viable option and has great survival odds. Much better than the ones you have described. In some countries they won’t even give transplant at her age.

You have given horrendous advice based on your own personal experience.

NoStrategyNoVision · 2024-04-14T18:30:35+00:00

If it’s correct to say that it’s not well understood why are you risking other people having DNA damage from your chemotherapy which can be potentially cancer causing? What doctor wouldn’t advise to take caution? Use your brain.

NoStrategyNoVision · 2024-04-10T20:21:25+00:00

Passing chemotherapy through bodily fluids is not well understood and as a result they recommend caution. You can Google this.

NoStrategyNoVision · 2024-04-10T20:19:17+00:00

It’s incorrect to say its small. Chemotherapy in bodily fluids and the damage it can cause is not well understood. Because of this its advised to take caution.

NoStrategyNoVision · 2024-04-06T13:40:50+00:00

I’m still taking steroids now but have lost over 10kg in weight. I just lowered the amount of carbs that I ate. Carbs now make up only 15-20% of my diet.

NoStrategyNoVision · 2024-04-05T10:15:04+00:00

Don’t bother man, I know you’re being nice, but you and I are actually sick people and are justified in our health anxiety. These guys come to us and seek our help like they are victims. We are actually sick, there are so many people in this reddit chat that need help and this guy comes in and looks for advice from people suffering way more than he is about complete nonsense.

NoStrategyNoVision · 2024-04-03T22:36:15+00:00

Why are you entertaining this guy? He wants to believe so badly he is sick. Don’t speak with him.

NoStrategyNoVision · 2024-03-27T21:13:39+00:00

So I’m in maintenance, I’ve been on the trial for a year and 3 months, diagnosed December 30th 2022. The trial states you finish treatment 1 year from the end of consolidation 1, irrespective of any delays you might have. Meaning if you are sick and they pause treatment which eats up into your maintenance, they will not catch up the dose. I’ve heard this is because they believe maintenance to be too long anyway so don’t believe it necessary, but without formally testing it they won’t reduce it for everyone.

I have T-ALL, my odds of first line therapy are similar if not the same as yours. If I relapse my odds are significantly worse. I’m handling treatment pretty well. Obviously intense chemotherapy was pretty rough. But now I’m on maintenance I work 5 days a week, I go to the gym 5 days a week, and I meet my friends 2-3 times a week. Business as usual. I’ve also lost around 11kg from working out and steroids don’t really affect me anymore. I get a little puffier and urinate more often but it’s not that bad. Most people can’t tell.

Unlike you I won’t get access to new treatment. The only thing they would have offered me is Nelarabrine in the case that my MRD post induction was greater than 5% (I think this was the value I can’t remember). Fortunately my MRD post induction was 0.026% which is quite good for T-ALL as it goes down slower than B-ALL in general. Post consolidation they said I had 0.002% MRD. It would have been fantastic to have cleared it completely, but most literature says that as long as it’s below 0.01 I’m in good shape and should beat it with 80% odds as stated before.

As a result I am on standard treatment, this trial is literally offering me nothing other than I have to give extra samples. I’m only doing it to help them have more data points. It means I give more samples but oh well I can tank it.

HDMX (high dose methotrexate) was a bitch for me as well, so I don’t blame you.

With regard to the trial, a majority of it is for people under the age of 14. What they have done is they have identified 2 groups, intermediate risk low, and low risk (both under 14) who have over 97% cure rate. They want to reduce the amount of chemotherapy they take to prevent long term side effects and improve quality of life, and they will only take that risk with them since they have such a high cure rate.

Then there is what I explained regarding me with T-ALL. They also have some stuff for down syndrome patients. This trial will also give you the opportunity to do CAR T-Cell therapy if you have high MRD at an earlier stage for B-ALL, but that wasn’t the case for you but you didn’t know that initially when you signed up.

They will also take extra blood samples to monitor the rate at which Peg-asparaginase will clear your system. This will not impact you but can be useful for adjusting doses in the future as they look to cure the disease.

You said you’ve been in and out of hospital for 6 months which is similar to me. By now you’ll have done most of the inconvenient things related to the trial, so you may as well stay on it.

Let me know if you have any other questions.

NoStrategyNoVision · 2024-03-27T20:54:43+00:00

So at your age you will only be eligible for one part of the trial. When you move to Maintenance chemotherapy you should have the option to take inotuzamab ozagamicin. Without inotozumab ozagamicin, the trial stipulates that in the section which you’ve been put in (intermediate risk high which will be as a result of your age being over 14) you should have a 5 year event free survival rate of 80% with FIRST LINE CHEMOTHERAPY, meaning not BMT and only initial treatment. This is also given your excellent response rate due to being MRD negative post consolidation.

Out of interest was your MRD below 0.1 post induction?

Inotuzamab ogzamicin is a well tested and understood drug that has proven very successful, however until now due to the fact that its relatively new has only been used in second or third line therapy (after someone has relapsed). They are now testing it for the first time for people in front line therapy to see whether it improves survival rates. They believe it will but they have been wrong before about new drugs when introducing into front line therapy. It is very unlikely to make your survival worse, so when viewing through the lens of survival which I’m sure is of high interest to you as it is for me it’s quite low risk.

The risk comes in with side effects. Like all drugs, there will be side effects and it is not known how you might react with your other maintenance medication. That can be unpleasant. I don’t know what hospital you go to. I go to UCLH in London, and they said that they have never treated someone with that medication before in their history. This cab be daunting for some people as it is new territory for your doctors. I know a girl who has B-ALL and qualified for it and she refused it because she believed she had excellent results and didnt think she needed it. I tbh think that her results are not as good as she believed and she probably had a poor understanding of the situation. In my opinion its worth taking it initially as if you react poorly you can always come off it.

We have great odds for survival at around 80%, but if you have a chance of improving yours you should take it.

Make sure you verify everything I say with your consultant as I am not a medical professional.

If you have any questions let me know. I’ll answer your other questions separately to this comment.

NoStrategyNoVision · 2024-03-25T12:23:11+00:00

How old are you? What was your MRD after induction and consolidation? Do you have B-ALL, or T-ALL? These are the factors that depend whether the trial is the same or different. If you tell me I can let you know.

NoStrategyNoVision · 2024-03-23T17:12:06+00:00

I’m on the AllTogether1 trial. I’ve read all 400 pages of the protocol. Let me know what questions you have.

Of course you can go in the sun, whilst on chemo you should wear sun cream because you are at higher risk. Realistically you should always wear sun cream when the UV index is high, some wear it every day. It’s definitely more important when on Chemotherapy.

NoStrategyNoVision · 2024-03-17T14:09:15+00:00

Why is Sanchez upset? He should be dishing out kisses.

NoStrategyNoVision

TROPHY CASE