I've Been Doing Chemo Every Week Since June 2023 Is This Normal?
If you get a Complete or Very Good Response, please do not get a SCT. It will damage your immune system, most likely forever. You'll also lose your Life Time of Gained Immunities - Your Immune System.
Search for the Determination Trial - Dana Faber Dec 23' Press Release
In 2010, DF started the Determination Trial. In 2018, DF made a major presentation of their Results - Claiming Everyone was Best to get a SCT, using figures (approx) of 24 months to first relapse with No SCT and 48 months to first Relapse with SCT.
Sadly this is True and Completely False. What DF did was only Report and Focus on the Worst Case Numbers of those people that had a Poor Response to Treatment.
What has Always been in their Report of 2018 was for those that Had a Very Good to Complete Response is, the Fact that Those People Actually went Longer before their First Remission and with far less complications of serious and frequent infections.
Now in Dec 23', DF says - for the Subgroup of Complete & Very Good Response - Keep the SCT In Reserve and do Not Get It Immediately after Induction.
They now say, the toxic chemicals of the SCT are more likely to cause more infections of a more serious nature and a much higher risk of secondary cancers.
In 2021/2022, I had an instant response to Darz+RVd. I never had the SCT. I was tested as MRD Neg at 7 months. I stopped all MM Meds. A known dormant lesion became active this last June/July. I started Revlimid & Dex - I was back to MRD Neg in 6 weeks and off all MM Meds since Dec 1, 23'. I've tested Neg twice since and just took Labs for my quarterly blood test clonoSEQ - No Meds, No BMB monitoring, No Cancer and no concern of a future event.
I'll be adding to my Story - Updates - get off All MM Meds when in Remission. Especially Darz and any mAb Med - they are constantly killing your Natural Killer Cells which are the Most Important Part of your Immune Response.
I'll provide Links to Case Studies that have documented this - Darz quickly stops killing MM (they stop expressing CD38) and always kills Natural Killer Cells since they always express CD38.
Katherine - the initial treatment is given to prepare you for the Stem Cell Transplant (SCT). If you are having an autologous SCT, you must be in remission from the MM in order for them to harvest your stem cells. Once you are in remission, they do all kinds of tests to make sure you can recover well from the transplant. Then they will harvest your stem cells. It was not a painful or hard procedure, just boring as heck because you sit there hooked to a big machine that takes out your blood, removes the stem cells, and sends the rest back into your body. The worst thing is getting to the bathroom is a big ordeal! In my case, they got enough stem cells to do two transplants if needed. Just keep in mind that everyone is different!! I can't stress that enough. Some people bounce right back from the SCT and say they are back to normal after a month or three months. I was very ill for six months - you can read my story for details. Most of us have what I call a "new normal" because we have lingering fatigue, and some mind fog, or wooziness. The best thing you can do for yourself is to have a walking regimen - whether that is six blocks or two miles, it will only help you. Then when you are in the hospital after the SCT, they will encourage you to walk around with your IV pole several times a day.
I know that this is all very frightening and confusing - but continue to ask questions here on this forum and of your doctors and nurses at the cancer clinic. I did not find this forum until after, I wish I had been on it before. I was told "you might get diarrhea or vomiting" after the SCT. No one warned me it would be explosive from both ends!!! I try to warn people because I was just not prepared. It was awful. And if it doesn't happen to you, good!! But if it does, it won't be a surprise.
Hang in there. Someone on this forum characterized MM as "a sneaky bastard" and I can't think of a more appropriate description! But you will find one of everything here and you will also find people who are (or have) experiencing the same thing as you. It keeps you sane for sure. We've got your back!
I had weekly treatments after my SCT for 2 cycles and then have been in biweekly treatments. I have been told this will continue until my MM comes out of dormancy and then we will start all over with weekly treatments and another SCT.
Wishing you all success with your treatments.
My doctors are talking of a stem cell transplant. Will the weekly chemo treatments continue after transplant?
Yes, it's not uncommon for chemotherapy schedules to involve weekly treatments, especially depending on the specifics of your myeloma and how well you are responding to the treatment. Chemotherapy for myeloma can be administered in cycles, which might include several hours of treatment over consecutive days, followed by a Show Full Answer
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Remission After Stem Cell Transplant
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