Hair loss with treatment

Hi AppleTree sorry to hear that your aunt is losing her hair. This can be one of the most upsetting part of the treatment journey.

The treatments used to treat Lymphomas like large B-cell lymphoma are very very strong….. and they have to be strong to kill of the cancer cells but unfortunately one of the many Side Effects of Treatments is Hair loss….. there is nothing that can be done to stop this.

Some people don’t lose all their hair and find it thins but everyone is different.

When people are advised that they will lose all their hair most people make a choice early on to shave off all their hair as this is then one thing less to worry and stress about especially if she leaves her hair and she start to find clumps if hair on her pillow in the morning.

Apart from the hair lose and the weakness how is she doing with her treatment?

Always around to chat and answer questions.

Supportive ((hugs)) to your aunt.

Hello, thanks for your message. It is really useful to know the background to treatment type. Will she get support generally and will they keep an eye on things like general weakness and her hair - assume regular hospital visits and a nurse that phones regularly will advise. I would like to support but don’t know the best way as she is quite independent but also very forgetful. So I am never sure if she doesn’t ask for help as she has forgotten- sometimes she forgets that she is ill. It would be useful to know if there are any generally things I can do. Assume diet / nutrient ion needs support, best foods etc.

Thanks

I was rather rude and did not introduce myself at the start. I am Mike and I help out around our various Lymphoma groups.

I don’t have DLBCL but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different from your aunts I do appreciate the challenges of this journey rather well.

DLBCL is a High-grade non-Hodgkin lymphoma.... this type of NHL is fast growing so needs to be treated aggressively.... on the whole the aim is to treat to cure but this also depends on how old your aunt is and if she has other health challenges.

She may be having B&R Bendamustine and Rituximab........ I had Rituximab as part of my main chemo treatment regime and it was very effective although my story is rather complicated See my story as I had to go onto other treatments but I am coming up to 8 years out from my last treatment and I am turning 68 in Nov and doing great.

Now your questions:

AppleTree said:

Will she get support generally and will they keep an eye on things like general weakness and her hair

When she is in hospital she will be well looked after but once she gets out and at home between treatment cycles she will most likely will not get calls or visits...... unless this has been specifically set up by the hospital through the Community Care Team....... this is a question you need to ask especially if you have concerns that she may not be able to look after herself and take medications.

There is nothing that her clinical team can do about her hair..... this is normally left up to the patients and family to make decisions....... but the hospital could give direction with regards to a wig, head coverings and head care...... again this question needs to be asked.

AppleTree said:

assume regular hospital visits and a nurse that phones regularly will advise

She may get a visit from a District Nurse to take bloods before her next treatment cycle........ another question to ask... I would not expect her to be having hospital visits between cycles unless there are issues arise and with how things are in the NHS it would be very unusual that she will get calls to check up on her........ the ones is on her and the family to make contact if they have questions or concerns.

It is therefore VERY important to have accurate contact information/names/numbers for reporting in issues especially during out of hours and weekends.

Nausea may be a challenge, in but remember she must not to suffer in silence as there are lots of tools available - but her team need to know how she is getting on as at times it is trial and error to get the right one. I was never sick during my 750+ hrs of main chemo.

Cancer-related fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue..... the less she does the longer the recovery.

There is a real Risk of infection so care needs to be taken to control infection contacts. Generally it takes about 48 to 72 hours for the body to break down and/or get rid of most chemo drugs. But the effects of the chemo on growth areas and your general immune system will last for weeks and is important to remember that she may well be more open to infections at about days 7-14 as this tends to be the window when our immune system is at its lowest……. then the body recovers in time for your next cycle….. but the more chemo she has the longer the recovery can take so by the end of treatment it could take a few months this to recover completely.

I was given this simple rule for keeping eye on infections…… If my temperature is 37.5°C, repeat in one hour. If my temperature has increased, whether I feel unwell or not, I must contact the hospital.

I would also highlight the importance of drinking lots of water (the aim is 2 litres every day) as this will flush out all the toxins released by the chemo, protects the kidneys and keeps her well hydrated.

AppleTree said:

Assume diet / nutrient ion needs support, best foods etc.

The dieticians in my unit said that food safety and hygiene are very important…… and why take the chance of developing a food based infection during treatment.

These were the tips I was given:

Shop smart – Check foods are in date.

Make sure you get the chilled and frozen foods home quickly.

Prepare and clean up - Clean hands and the kitchen.

Use separate chopping boards for raw and ready to eat foods.

Prevent cross-contamination - Separate raw meats, chicken, seafood from ready to eat foods in the fridge.

Cook food properly, piping hot throughout.

Eat out in clean places and make sure your food is hot.

Don't have carry out food as you can not control it.

Eat

Meat, chicken and fish cooked through

Pasteurised milk

Cooked eggs with a firm yolk

Washed fresh or cooked fruit and vegetables

Hard cheese or soft cheese made from pasteurised milk

Vacuum-packs meat, ham.

Re-heat cold rice till it is steaming all the way through.

Some foods have a higher risk of becoming tainted with bacteria. Here are some foods you might want to avoid.

Avoid

Raw or undercooked meat, chicken, fish and no shellfish

Unpasteurised or raw milk

Raw or undercooked eggs

Unwashed fresh fruit and vegetables

Soft cheeses made from unpasteurised milk

Uncovered deli meats

Cold rice

To limit your risk of infection from food:

• Cooking food (eggs/meat/fish) thoroughly and having good hand hygiene.
• Avoid cross-contamination between cooked and raw foods
• Wash fruit and vegetables well
• Avoid unpasteurised cheeses and milk
• Choose pasteurised milk, yoghurts and cheese
• Ensure that food is in date
• If having cooked/cured meat, opt to vacuum packed and not from the deli counter.

You may want to check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run regular Support Platforms with a few groups specifically for Cares, Family and Friends........ I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.

Always around to help and chat.

Hello Mike,

Thank you so much for all the information. That was such a useful message and I feel like I know much more about what to expect. I wasn’t sure about resting and staying away from risk of germs but seems better when she is out and about doing things so good to know this is ok. Also hydration that makes sense. 

Best wishes and thanks again,
AT

For me this was the most upsetting part of the treatment journey when diagnosed with stage 4 Lymphoma.  My best advice is to tell her nothing is permanent.  I was bald but 12 months later have a full head of hair.  Our hair does not define us.  Although horrible and upsetting I’d rather sacrifice my hair then my life.  I kept telling myself I’d get through it and it would grow back xx 

Thank you - that is good to know. She’s actually coping better than anticipated but not talking much. Just to add if anyone is following this: more hair loss happens after every treatment but weakness reduces after a week or two. A few more cycles to go. 

Like wise with my Chemo I went bald. It kind of went in stages for me with the more treament I had. The hair thinned then fell out, then body hair and eye brows. As a guy it was nice having non hairy legs haha. so smooth and shiny. I had a nice clear chest as well. No wax! Over 14 months clear now and I'm pretty much the same hairy guy as before. It does grow a little bit slower, but it don't worry me.

Congratulations on being 14 months clear and love your attitude