To begin radiotherapy for Cutaneous T cell lymphoma on my tummy.

Hi , I see this is your first post on the Community so welcome.

I also see that you have not joined any of our cancer groups so are we talking about you having one of the number of types of T-Cell Lymphoma?

Could you give us some more information so we can better advise.

hi thanks for the prompt reply no I have neither,.my mother in law was diagnosed with stage 4 lung cancer no treatment available, since diagnosis she is now covered in a red angry rash which is preventing her from sleeping or even wearing clothing as her skin is so sore, all professionals just say they haven't seen it before just looking at ways to be of help

Thank again , this is very helpful and I am so sorry to hear about your mum.

T-Cell Lymphoma is a cancer of the skin and requires some very specialist treatments that are only available through our consultants so it would not be right for us none medical folks to be advising on a problem that we may not have experience in.

But I would always have frank conversations with your mum’s medical professionals to try heya clear way forward for her.

But we do have our ‘Ask an Expert’ section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

We also have these forums where you can connect with others supporting family and friends through their cancer journey: Carers Forum  and Friends and Family Forum  and Supporting someone with incurable cancer

Follow the links and join the groups. To do this hit the ‘Join the Group’ tab just under the main group name. At this point go to the right on the group home page and select how you want to receive email notifications when someone answers your posts. If in the future you don’t want to receive notifications just switch off the email notifications tab.

The BEST WAY to get support is to go to the 'Start a Discussion' tab just under the main group name. Set up your own Discussion and Introduce yourself to the group - you could just copy an paste what you have in this first post.

You can also use our various Macmillan Support Line Services then call them on 0808 808 00 00 to be very helpful covering Emotional Support and Practical Information. Clinical Information and Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

All the best to your mum.

Ridgeway - have you done any bleach baths? Antibiotics are ok but they will not prevent you from getting another sepsis unless you do bleach bath. I have amazing doctors but if not for bleach baths I don't think I would have been around.

In addition, to bleach baths I eat a diet full of iron and protein to replenish skin shedding.

If you end up with CD30, ask your doctor about Brentuximab Vedotin (BV). You can't take it for long, so you want it just enough and then try to prevent it from transforming to CD30 in the first place.

I use steroids but very rarely. It is more to stop the itch cycle.

Hi  and welcome to the Online Community.

Bleach Baths are not widely used in the UK. My two very respected Dermatologist Teams did not advise this for me due to how my condition was presenting and the other treatments I was having as it would not be benefit me and would be counterproductive to my other treatments.

Over my 14 years with 70% coverage I never did have one infection, maybe I was lucky.

I think that everyone finds the best way to deal with living with CTCL and for some Bleach Baths may be an option but should only be done with the support of your Dermatology Team.

This is a LINK to an info sheet from the Dermatology Department in St Guys and St Thomas London.

Hi Mike - I started a thread on bleach baths but it got deleted because it is outside the guidance. This is ahead of its times: the reason I am still around is that I modified concentration and duration depending on skin condition.

I recently met with a well-respected CTCL dr (for the third time) connected to such research who agrees with me. I also know of another well known dr that also does this. My team is also aware of what I am doing. I can provide the names privately.

You have to understand that people in stage 3 and 4 have a poor prognosis. The majority don't survive. If someone came 20-30 years ago recommending again CHOP, the message would have been deleted. But today, the person that called everyone saying that is now the head of a foundation. Yet people are still dying, at very high numbers, and the #1 reason is infection, and the skin is open, and all is recommended is 2-3 per week, when infections spread within hours?

I don't see bleach baths as a cure. It will be wrong for anyone to think that I am in that camp. What it does do is give conventional therapy a chance to work because it can take weeks and months for skin to improve, and in the meantime your skin is open. Creams just made me itch and some, like steroids, it is bad for skin long-term. We know that staph causes progressions and so on (too much research for me to pull right now) and when the skin is open you automatically have to assume it is infected, and infections spread quickly which then results in sepsis.

I never again had any sepsis, and rarely ever used antibiotics, once I stated doing bleach baths. Which proves to me that infections that kills people actually starts from the skin, and by removing as much as possible it never has the chance to go deep enough to cause sepsis.

This has been my experience. Of course, always involve your doctors in anything you are doing and, more importantly, because of the high mortality don't settle for one team at one center, no matter how smart your team is there are people with other views, travel around, read research, be your own advocate, it is the reason I am still here even though I had such small odds.

Hi again , there are areas that us non professionals are best not to put in the threads. We can share our experiences but can only give our personal treatment journeys. As I said in the other thread my team reviewed the use of Bleach Baths but for me it was not suitable due to the treatments 

We all need to continue to push the doors of the area specialists to ensure that we get the best treatment available.

All the best.

Thank you, Mike. I am sharing my experience. I never again had another sepsis and even though many dr recommend daily antibiotics as a precaution, I just didn't need to take any. This is huge, because most die from infections rather than CTCL.

Please ask your doctor about “Duvic regimen” by Madeleine Duvic of MD Anderson Cancer Center in Texas, USA.

"In addition to antibiotics, whirlpool therapy can be used to treat erythrodermic flares of MF/SS because it reduces bacterial colonization and debrides excess scale. 5 It also decreases inflammation and promotes wound cleansing. 6 Moreover, a pilot study showed that whirlpool therapy followed by a quick rinse eradicated more than four times as many bacteria compared with whirlpool therapy alone. 7 In our protocol, the 0.25% acetic acid rinse further decreases the skin bacterial load and reduces skin pH, which inhibits S. aureus colonization. 8

"Because the severity of MF/SS is measured by the extent of skin erythema, clinicians must recognize staphylococcal colo- nization and sepsis in cases of erythroderma. Since the most common cause of death in MF/SS patients is infection, 9 espe- cially from the use of indwelling venous catheters causing line sepsis, treatment of S. aureus is critical. For patients who develop an erythrodermic flare of MF/SS secondary to S. au- reus, we recommend the “Duvic regimen” consisting of IV antibiotics, whirlpool therapy, and steroid wet wraps."

You can download the Duvic Regiment from the link and print it for your team. I had situations where bleach bath would seem harsh, but I went along anyway and only got better. Dr. Duvic actually wants to remove excess scale because it harbors bacteria, this was my experience while others may consider skin too brittle to use bleach.

From my experience, and as you pointed in the link, most doctors that recommend bleach baths and nutrition are similar to others such as eczema--not specific to CTCL. Even though we may be much more prone to infections and depletion of nutrients (through the skin) at much higher rates than others, the recommendation is the same. It does not make any sense at all. As one CTCL dr told me to convince me to increase certain food intake, "by the time the low protein count is registered in the blood, it will be too late." I was losing nutrients every time I went through a shedding cycle.

I believe the same thing that happened with CHOP, which was standard for CTCL a few decades ago but rarely used today, the same thing will happen with bleach baths, where the frequency will increase to prevent progression or increase duration response to medications.

Because bleach bath is cheap (doesn't pay to research), it is up to patients to push their doctors, not by doing stuff on our own but find CTCL doctors who side with you and ask them to work with your doctors. This is the only sure way I found to make a difference and improve patient outcome across the board.

Hello J_Usa

thanks for this.. very interesting..can you tell me what bleach and what sort of dilution?

i do have low iron ..so that is very interesting and I’ll start eating more iron rich foods

I found out today that my last biopsy ..2 years ago..was faintly CD30. I had another one today..results 3-4:weeks

reagrds

Hi , check out this LINK to an info sheet from the Dermatology Department in St Guys and St Thomas London.

In the UK, this type of treatment should only be done under the supervision of an experienced Dermatologist.