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I am worried she is being given an overload of medications and treatments all at once.

January 23
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Answer Summary

Members reassured someone whose mother was receiving cyclophosphamide infusions, with many sharing that the infusion itself is typically... Read more

Members reassured someone whose mother was receiving cyclophosphamide infusions, with many sharing that the infusion itself is typically straightforward and well-tolerated, though fatigue, mild nausea, and low energy in the days following are common and manageable with rest, hydration, and anti-nausea medication. Several members emphasized the critical importance of drinking plenty of water to protect the bladder, monitoring blood counts in the weeks after treatment, and reporting any concerning symptoms like fever or blood in urine immediately to the medical team. A recurring theme was the value of asking detailed questions about why specific drugs and treatment timelines were chosen, seeking clarity on disease progression and risk level, and considering a second opinion if concerns about treatment intensity persist.

A MyMyelomaTeam Member

Akala; it sounds like her medical team are treating her as they see fit. Learn all you can about disease & treatment & ask them the ‘why’ of their choices. They generally try to personalize best treatment for each person . You could always ask for a second opinion….🥹

February 5
A MyMyelomaTeam Member

Akala; you should feel free to ask her medical team any questions you have. I’m sorry I haven’t had that treatment so I can’t help clarify.. It will help your stress level to get more info🥹

January 24
A MyMyelomaTeam Member

Yes—many of us in the myeloma community have had cyclophosphamide (Cytoxan) by infusion.

Usually pretty straightforward and not painful.Some feel tired or a bit heavy during or right after.Nausea is possible, but many are given anti-nausea meds first, which really helps.

Cyclophosphamide infusion is usually tolerated better than many people expect. Most patients say the infusion itself is uneventful, and they sit comfortably while it runs. Some feel slightly tired or heavy during or after, but serious reactions during infusion are uncommon.

In the days that follow, tiredness is the most frequent complaint. Many people feel fine on day one, then notice their energy drop on days two to four. The body can feel weak, slow, and achy, and even simple tasks may feel tiring. This is normal and does not mean the treatment is harming you. Resting when needed and doing very light movement helps recovery.

Nausea can happen, but it is often mild and well controlled with medication. Some people experience a reduced appetite or a strange taste in the mouth. Eating small portions throughout the day is usually easier than large meals. Warm foods, soups, rice, and simple meals are better tolerated than oily or spicy foods.

Drinking plenty of water is extremely important with cyclophosphamide. The medicine is cleared through the urine and can irritate the bladder if fluids are low. Patients are encouraged to drink regularly and urinate often, especially during the first twenty-four hours after treatment. Any burning sensation, pain, or blood in the urine should be reported immediately.

Blood counts may drop about one to two weeks after the infusion. Some patients feel normal even when counts are low, which is why regular blood tests are necessary. When immunity is low, infections can happen more easily. Fever, chills, sore throat, or feeling suddenly unwell should never be ignored and require urgent medical attention.

With repeated cycles, some people notice ongoing fatigue, mild hair thinning, dry skin, or difficulty concentrating. These effects are usually temporary and improve once treatment is reduced or stopped. Many patients say the mental fog is frustrating but short-lived.

Emotionally, cyclophosphamide can make some people feel low, anxious, or easily overwhelmed. This is not a personal weakness. It is a combination of medication effects, exhaustion, and the stress of illness. Talking, prayer, and quiet routines help many patients regain balance.

Overall, most people describe cyclophosphamide as difficult but manageable. Many say it was easier than they feared before starting. The key lessons patients share are to hydrate well, listen to the body, report symptoms early, and accept rest without guilt

Share among others 🙏

January 24
A MyMyelomaTeam Member

I spent 6 years in China- Teaching and they taught me a lot - Look at Trisenox- or Arsenol- both are from China and are being used to cure Myeloma and a whole range of other cancers ? What is the matter with us ? , the Chinese have had these cures for many hundreds of years - Get well Soon- alex.

January 25
A MyMyelomaTeam Member

She has IgG lambda they said it’s standard risk. They told me in the beginning of January that it’s slow progressing. But their treatment is very aggressive. She’s doing direct target treatment with chemo infusions all at once. I asked if they can give her body breaks they refused. Today they want to do radiation therapy I refused because her body needs a break. To them it’s about numbers not the person’s emotional state. I thought I had palliative care on my side but I find myself fighting them too. I’m worried her body will crash. They tell me my worry doesn’t have any data to back it.

January 25

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