Ist chemotherapy

Hi Sharon,

I hope you don't mind me responding here - my name's Ellen and I work on the Community team here at Macmillan. I'd like to wish you a warm welcome to the site, though I'm sorry for the circumstances in which you find yourself here. I hope you find the site to be a source of comfort and support.

I'm posting to let you know that I've moved your post into our Hodgkin Lymphoma group so that other members who may have been through something similar are able to respond and share their experiences.

I hope the Community helps to show you that you are not alone, Sharon, and there's lots of support available for you and your family. I'm sure a member of the group will be along shortly to respond.

Best wishes,

Ellen
Macmillan Community Team

Hi Sharon .

There is no formula for how this works out, but her team will be balancing the need for her to have treatment (the fact she is getting it showed that it is needed) but at the same time get her out of the hospital into a safer environment due to the challenges of the virus.

They will have started her infusion based on the best knowledge/protocol for her age and presentation but it’s not unusual to have reactions just like this and everything being slowed down - it’s a touch on the scary side but this is all normal for some folks and this will be taken into consideration during her next treatment,

Infections raising their heads out of the blue can indeed happen. She could well have had a low level infection before she went to have her first treatment and the first chemo hit just confused her immune system and the infection kicked off....... and from my first hand experience it can be that quick.

Again they would not have sent her home if they did not felt that the oral antibiotics would not do the job....... this is unfortunately all part of the treatment rollercoaster.

Her partner will have to keep an eye on her temperature and call in to her team if things change,

I can understand how you would love to do more but under the circumstances she is safer being shielded at home.

((hugs))

Hello , 

I am sorry to hear your daughter is in need of chemo and I understand how worrying it is when you can’t be with her to support her at this time. 
My husband is on his 2nd cycle of chemo and started treatment about a month ago. We also ended up in A and E within 24hrs of the first chemo due to high temp and were given antibiotics and sent home a couple of hours later. After checking bloods etc and they were happy there was no infection and we were sent home quickly to minimise risks of catching something from someone else in A and E. 

We make use of this support group and have been given a medical team triage number both of which we use to check symptoms and get advice. It is a scary time in the world but there are lots of wonderful people both medically trained and going through the same experiences who can help and offer reassurance. 
The best advice given to us is to speak up , ask her team for advice and info so you can feel confident that everything progresses as it should. Chemo affects lots of people in different ways but we all want those we love to be as comfortable and as confident in the treatment as possible . Sending you hugs xx

Hi /Sharon,

As the Mum of a HL daughter who like yours was away from home when she went through all her treatments as an adult, I really feel for you, it's awful with the virus meaning you can't be there to give her a big hug and try to help. The best advice I can give is to tell you that her team would be there for any problems, and the fact she's been sent home suggests they suspected that oral antibiotics would indeed be the best way forward. She should check her temp and phone in if she has any concerns, (high or indeed lower than her normal) and they will give advice over the phone and see her if needed. 

Be reassured that the hospital will do all they can to ensure that your daughter is well treated to the best of their ability. It's cold comfort I know, its doubly hard at this time, and as a Mum you want to take it all away but obviously also be there with and for her too.....

Sending you a massive Mum to Mum hug over the site....xxx

Hi 

thank you so much for your words iof support and the advice . 
I really appreciate it . 
sharon x

Hi

thank you for  replying it’s help a lot . 
sending you and your family best wishes at this difficult time. 

Sharon x

Hi 

thank you so much for your reply everyone on here is helping me more than you can imagine. 
I think I just feel so helpless because of the whole virus situation so this escalates my anxiety as I can’t check On her myself . 
her partner is a very level headed person and I trust he is taking care of her but it’s so hard to let go and let someone else take that responsibility. 
but you are all right the hospital knows the risks at the moment so I understand . 
Thank you again 

sharon x

Hello Sharon.

We totally get your situation, I really feel for you. 
I pushed for a diagnose when my husband was too unwell to do it himself and even though we live together I now have to sit back and wait for him whilst he’s at chemo, I have to trust he is open and communicates clearly with his medical team so they can fully understand and help him.
We want to help, to understand and to support what’s going on and these are unprecedented times. Your daughter is lucky to have such a supportive family and partner.

You’ve got this. Everyone here will support you and never be afraid to question things.

I’m a mom and a wife - our love never stops and worries and concerns are intensified at the moment.
You are doing amazing.
I know we can’t do and control everything and we have to trust other people to make decisions and know what’s right,

I have to remind myself that we’re dealing with professionals and knowledge way beyond my current understanding but I’m learning and getting there too. 

Take care and stay safe xx

Thank you. x

sharon 

Hello Sharon.  Greetings from the United States.  I'm sorry to hear that your family is going through all of this. It must be very difficult for your daughter to go through all of this without anyone at the clinic, and due to the coronovirus you can't even see or help her at home.

While you didn't mention which chemotherapy treatment she received, ABVD is the most common treatment for new hodgkin's patients, and it is the first treatment that I received.

On my first day getting treatment (over 2 years ago) my nurse gave me a three ring binder and a set of pages on the treatment that i was going to receive. We went through all of the side effects, and what to do if I got one of them. She told me that bleomycin (the B in ABVD) can cause a fever in the first 24 hours.and that unless it is very high or I have other symptoms, or it lasts longer than 24 hours, then I shouldn't really need to worry about it (I never did get this fever). However, if you get a fever more than 24 hours after treatment, then she said that I should call the clinic (they have a 24 hour answering service) and they'll decide whether I need to seek treatment.

There is a good website, chemocare that has information about the various chemotherapy drugs. You can google chemocare and the drug name to get information. They mention that 30% of patients get fevers as a side effect from bleomycin.  So this is fairly common, and your daughter shouldn't be too concerned.

When she went to the A&E, I assume that they ran blood tests, including a complete blood count (CBC), which is a chemotherapy patient's best friend. Amongst other things, this test will tell you how strong your immune system is (the main indicators are the neutrophil number and the white blood cell count (wbc)).  Given that this was just hours after her very first treatment, these were likely in the normal range, so they would treat it similarly to a non-cancer patient having a low grade fever (they'd prefer not to keep you at the hospital since you don't need a high level of care and you are more at risk of catching an infection there).

I went to the emergency room once with a fever over 100.4F after having outpatient surgery the day before. I was concerned about infection. They ran a CBC and collected blood to test for infection (that test takes days though).  My bloods were normal so they sent me home after a few hours and told me to come back if the fever got worse. I got better.  In contrast, another time I had a fever and was severely neutropenic (my WBC was below the level that they could measure, so practically 0) and I stayed in the cancer ward for 5 days where they treated me and essentially waited for my immune system to come back and my fever to drop.  I don't know all of the details, but I think that given the circumstances, your daughter was treated normally at the A&E.

While my heart didn't race during chemo, I did get arm pain from the last chemo drug that they give you with ABVD (if memory serves, its the D). This is very common and happened to me all the time. When it happens, they will slow the rate, add saline to dilute it, and apply heat to your arm to dilate the blood vessels. It is likely that they were following the normal protocol including drip rate when your daughter experienced this pain and I think that this arm pain likely would have happened, whether they were running late or not.  Your daughter can ask them to use a slower drip rate and dilute it next time, so that she avoids this pain.

Given that they had trouble drawing your daughter's blood and your daughter fainted, she may want to consider getting a picc line or a port.  A picc line goes into the upper inner arm. There is a screw on attachment outside the arm, so no more needles.  Since this sticks out of the arm, it has a higher chance of causing infection and needs to be kept dry (no baths or swimming, you need to cover it in the shower). A port is inserted under the skin in the chest. A needle is needed to access it, but there is a big target and it is pretty painless. You can swim, bathe, and shower normally with it, and it is less likely to get infected since it is under the skin. With both of these, there is a tube that goes through the veins from the entry point to a major vein that empties into the heart. A big benefit of this is that the chemo drugs will be delivered into a wider, stronger vein that can better handle the chemicals (chemo can damage the veins in her arms).  In particular, this will eliminate the vein pain from ABVD and they can run that last drug at a faster rate.  Both require minor outpatient surgeries.  She'll want to discuss the impact of coronavirus with her doctor when asking about these.  They may not be offering those surgeries during the pandemic.

I don't remember the nurses ever monitoring me after receiving ABVD. If they give you a benadryl infusion, they do check that you can stand and walk ok, since it can make you dizzy or too drowsy to stand/walk.  Aside from that, they just asked me how I felt and sent me home. In contrast, when I got a red blood transfusion, they did monitor me for maybe an hour afterwards (iirc) to verify that I didn't have an adverse reaction to the blood. So each type of infusion has its own protocol. Since your daughter didn't have a fever when she left, it sounds like she was treated normally for ABVD, and not rushed out.

I wish your daughter well. I hope that she has a better experience going forward. While you can't visit her now, you can still facetime/zoom/skype to see her.  Take care.